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The Arc of Indiana's John Dickerson on the "Real Problem"

On Wednesday, the Associated Press reported that some state workers in Indiana suggested leaving people with intellectual and developmental disabilities at homeless shelters if they can't be cared for at home due to decreased funding for support services.

The Arc of Indiana's John Dickerson on posted on his blog about the "real problem."

He said:

"No family who cares for a loved one with a developmental disability such as autism, Down syndrome, or cerebral palsy should ever be told that a homeless shelter is an option.  But, punishing state employees will not address a very real problem.

The real problem is that viable options are not being made available to families due to Indiana’s revenue short fall and changes in state policy.  Families in need are facing a crisis in receiving critical services."

What can you do to help?

  • Learn a bit more about what we do.
  • If you're in Indiana, join The Arc and contribute to the solution.
  • Or you can make a donation, and know that it will go a long way in helping create solutions to this pressing issue.



Indiana ends food aid for people with developmental disabilities.

The Arc of Indiana's John Dickerson, the chapter's executive director, says, "We've got to have some sort of a way to cover people in the meantime because otherwise this new food policy could leave people without any food budget at all."

You can read the full story from the Washington Post here.

Paul S. Miller, Advocate for Disabled, Dies at 49

From the New York Times:

"Paul Miller, a lawyer who was born with achondroplasia — dwarfism — overcame discrimination because of his disability and became a leader in the disability rights movement, died Tuesday at his home on Mercer Island, Wash. He was 49."

Read the rest of the story here.

Top Ten Reasons to Attend The Arc’s National Convention in Florida November 3-6

10. Get an overview of the newly established Autism NOW! Center funded by a $1.87 million grant from the Administration on Developmental Disabilities.

9. Hear from Sharon Lewis, Commissioner of the ADD, and Melody Musgrove, Director of the Office of Special Education, U.S. Department of Education, who are speaking at this year’s plenary session.

8. Celebrate Paul Marchand’s 38-year career and contributions to The Arc at the Closing Dinner.

7. Take advantage of networking at the single biggest gathering of the year for self-advocates and families, members of The Arc, employees, board members, experts and professionals.

6. Celebrate the 60th anniversary of The Arc and get ready for the next 60 years.

5. Witness the unveiling of The Arc’s new brand identity.

4. Enjoy sunny Florida and dance the night away at a party hosted by The Arc of Florida and spend some time at Disney World®.

3. Tell your story and be part of The Archive as we record the oral histories of people involved in the intellectual and developmental disability movement.

2. Let Hammer Travel handle the headache of getting there with special travel arrangements personalized for people with disabilities.

1. Have your voice heard and participate in the future of The Arc through elections, forums, roundtable sessions and more.

To register, go to our Convention website.

TV Characters with Disabilities Scarce, Report Finds

Television shows lack a realistic representation of characters with disabilities, according to a recent study released.

From a post on Disability Scoop: "Just 1 percent of regular characters on scripted shows scheduled to air on broadcast networks this season have a disability. The findings  are part of a new report from the Gay & Lesbian Alliance Against Defamation, which for the first time this year included disability in its annual look at diversity on television. In addition to disability, the report considered characters’ gender, sexual orientation, race and ethnicity."

You can read the full article, and find a link to the entire study here.

Egle Helps Lead the Way to Eradicating use of the ‘R' Word

If you haven't seen it, check out The FairFax Times feature story on The Arc's own Jill Egle.

Jill serves as The Arc of Northern Virgina's co-executive director and is a self-advocate intern in The Arc's national office in Washington, D.C. Here's a snippet of the piece:

"Even though the organization's mission is to assist and advocate for people with intellectual and developmental disabilities, some in The Arc of Northern Virginia were taken aback when Executive Director Nancy Mercer wanted to bring on Jill Egle as co-executive director.

"They weren't used to thinking about someone with an intellectual disability in a leadership role," Mercer said. But she recognized leadership abilities in Egle, who originally joined the Arc staff as an administrative assistant.

"It's amazing what this nonprofit has done for me," Egle said of The Arc, while dabbing tears away.

Egle continuously strives to exceed others' expectations of her abilities. With Mercer as a mentor, she goes to meetings, lobbies state legislators and helps raise money for the nonprofit.

"She raised $50,000 in her first year," Mercer said. "People don't say 'no' to her.""

Read the rest of the article here.

New York Arcs to Host Second Annual Autism Conference

The Madison/Cortland Arc, The Arc of Oneida-Lewis, and the Herkimer Arc, all in New York, will be hosting the second annual autism conference.

According to the Oneida Daily Dispatch:

"Dr. Tony Attwood, a clinical psychologist from Brisbane, Australia, will be speaking at the Turning Stone Resort on Monday, Nov. 1.

The conference will be, 'A Complete Guide to Autism/Aspergers Syndrome, From relationships and making friends to emotional management and social skills.'"

Read more about the conference here.

Missouri Expands Aid for People with Developmental Disabilities by $8.2 Million

People in Missouri with developmental disabilities saw an important step take place last week regarding greater access to state aid. According to the Kansas City Star:

"Nearly 5,000 Missouri families of individuals with developmental disabilities are on a waiting list for state-funded services, such as ramps, day programs, dental services and personal care attendants.

The state took a small but significant step toward addressing that unmet need on Thursday with an $8.2 million program expansion that will rescue about 470 families from waiting-list limbo in coming weeks.

“It’s a great win, but it’s nowhere near the numbers that we need to have taken off the list,” said Angela Gourley, executive director of Arc of Missouri, an advocacy group for the developmentally disabled."

You can read the entire article here.

Genesee ARC Names Vocational Director

Scott Jones has been promoted to director of vocational services at Genesee ARC, the agency announced Wednesday.

For more information on the promotion, please see the story in TheDaily News.


Obama Signs Rosa's Law

Washington, DC - President Barack Obama signed legislation yesterday requiring the federal government to replace the term “mental retardation” with “intellectual disability” in many areas of government. You can read more about the legislation in a post by Disability Scoop.

You can read more about Rosa's Law here.

The Arc Receives ACF Award of $1.87 Million for National Autism Resource and Information Center

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc would receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.
“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network.  We are proud to have the opportunity to launch Autism NOW, a much needed resource.  It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

The Arc's Disability Survey Focuses on Military Families

Washington, DC - The Arc, a national organization that supports individuals with intellectual and developmental disabilities (I/DD) and their families is engaging military families connected to individuals with I/DD to determine their disability needs through a national survey.  The Arc is partnering with the National Military Family Association (NFMA) and other military channels to distribute a special version of The Arc FINDS Family and Individual Needs for Disability Supports) survey to military families who have a family member with a disability.

The Arc FINDS (Family and Individual Needs for Disability Supports) is a free, online survey designed to tap into the knowledge and perspectives of families and individuals with disabilities on issues which arise across an individual’s life span.  FINDS has been in the field since late July and already has more than 4,500 respondents, which makes it one of the largest single collections of perspectives from individuals and families connected to intellectual and developmental disabilities in the history of the field.  Results will provide greater understanding about what disability-related services and supports are being received currently, where gaps exist, and what new supports may be needed from the military family perspective.  

“Reaching out to military families through The Arc FINDS survey increases the meaningful involvement of populations we serve in determining what services are provided and our success rate in delivering those services.  We have much to gain from the perspective of military families when you consider the diversity of the force and the unique challenges these families face while serving our country,” said Peter V. Berns, CEO of The Arc. 

Survey questions cover areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics.  It is written to allow for both the perspective of individuals with I/DD, as well as their parents/caregivers.  It also allows for the differences in service and supports required at different stages of life. 

To access the online survey, go to: www.thearc.org and link to the survey “Military Families: Click Here.”  Please direct questions to Ann Cameron Caldwell, Chief Research and Innovations Officer at Caldwell@thearc.org.

3-Year College Program for Young Adults with Disabilities

Tinton Falls - The Arc of Monmouth has collaborated with Brookdale Community College to address the needs of transitioning young adults with intellectual and developmental disabilities, ages 21 to 26, who have graduated high school and would like to continue their education. The project, Keep Achieving (Kach) at Brookdale, is partially funded by a grant from The Arc of the United States through the Walmart Foundation.

Kach will provide a variety of classroom and experiential learning at the college and in the community. The project will consist of six college semesters over a three-year period commencing in September 2010.

The Arc of Monmouth and Brookdale Community College have identified five areas of need for transitioning students into the community: self-determination; employment or volunteer opportunities; post secondary education and vocational training; involvement in the community, including social and civic affairs. In partnership, The Arc and Brookdale have planned a college experience for six individuals per year.

Students will participate in career exploration, audit classes in their chosen fields and participate in student life activities with the support of peer mentors. At the completion of their college experience, students should gain the skills and confidence necessary for them to succeed in their chosen paid or volunteer career field.

For additional information on this exceptional opportunity, contact Sarah Logan at (732) 493-1919 ext. 665 or slogan@arcofmonmouth.org. Applications for Kach are available on The Arc of Monmouth website www.arcofmonmouth.org.

The Arc Launches National Disability Needs Survey

Washington, DC - As we pause to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA), The Arc recognizes that there has been significant progress made on behalf of people with disabilities.  There is more still to be done, however, and The Arc is initiating a national effort to tap into the knowledge and perspectives of individuals and families within the intellectual and developmental disabilities (I/DD) community.

Our goal is to assist the sector in determining needs for services and supports.  This survey—The Arc FINDS (Family and Individual Needs for Disability Supports) —will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

The Arc FINDS launches July 21 and will be accessible until September 1 to all families and individuals with I/DD, both in and outside of The Arc’s chapter network.  Dissemination of the survey to a broad range of disability and caregiving networks across the country and throughout our allied organizations will maximize the survey’s reach and findings.

“The Arc FINDS will capture the perceptions of individuals with intellectual and developmental disabilities of all ages, as well as those of their families and caregivers.  The results will provide us with a much-needed candid and current view on issues concerning the needs for disability supports across the life span,” said Peter V. Berns, CEO of The Arc.

“We are committed to finding a meaningful way to involve the population we serve in determining the services provided and gauging the successful delivery of these services—just as any business would involve its consumer network through an open market-research style survey.  We’re thrilled to be promoting FINDS in collaboration with other top disability organizations focused on those with intellectual and development disabilities,” Berns said.

Ann Cameron Caldwell, Chief Research and Innovations Officer for The Arc, is directing the survey and its evaluation.  “The information gleaned from the survey will help identify—and document—nationally, by state and locally what families want in terms of needed services and supports. This information, including personal stories, will be valuable in informing and supporting ongoing program development, advocacy and policy work,” said Dr. Caldwell, who is the parent of a teenager with Down syndrome.

Questions are being asked in areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics.  It is written to allow for both the perspective of individuals with I/DD, as well as their parents/caregivers.  It also assumes for the differences in service and supports required at different stages of life.

Options are in place for respondents to contribute personal stories about their experiences with contact information to support advocacy efforts here in Washington.

The vehicle for collection will be an online survey that respondents can link to electronically through The Arc’s website:  www.thearc.org.  There is no cost to participate and all responses will be confidential; it will take respondents about 30 minutes to complete the survey.  The survey may also be found at:   http://www.surveymonkey.com/s/TheArcFinds2010

This information will be shared initially at The Arc’s National Convention (November 3 - 6, 2010 in Orlando, Florida), as well as publicly on The Arc’s website.

Past President of The Arc "Gil" Johnson Passes Away

H. Gilbert "Gil" Johnson, 83
Past President of The Arc Passes Away

May 27, 2010 - www.oregonlive.com

H. Gilbert Johnson of Portland passed away Monday, May 17, 2010, following a long illness. He was 83. Born March 16, 1927, in Milton, Mass., Gil was the oldest of six children born to Harry and Ebba Johnson. After graduating high school at age 16, he attended Northeastern University in Boston. He interrupted college to enlist in the U.S. Navy when he turned 18, just as World War II was winding down. The war ended when he was still in basic training.

He was part of the charter crew of the aircraft carrier USS Franklin D. Roosevelt, which patrolled the Caribbean and Atlantic after the war. Gil returned to college, graduating from Boston University in 1950. When a cousin got married and moved to the Seattle area, Gil and his best friend drove the couple's car across the country. While the friend took the first train home, Gil took one look at the Pacific Northwest's salmon and was hooked. He stayed. He married Emily Aaberg in 1951, and they had four children, Richard, Tom, Susan and Nancy.

Gil spent several years with Union Oil, transferring often between the Portland and Seattle areas. Faced with a promotion that would send him to Southern California, he followed the advice of a high school friend and joined Merrill Lynch where he spent nearly 40 years as a broker in Portland. While many brokers take their clients golfing, Gil never touched a club in his life. His passion was hunting and fishing, which he shared with family, friends, clients and sometimes total strangers.

Inspired by second-born son Tom, who had a unique combination of autism and mental impairment, Gil was involved in very early efforts to help all mentally disabled children. He literally helped build the area's first school for mentally disabled children-what is today the Edwards Center in Aloha. He spent countless hours involved in local, state and national advocacy organizations, and in 1978 was elected president of the National Association of Retarded Children, the charity now known as The Arc of the United States.

After retiring from Merrill Lynch, Gil often consulted for his old brokerage partners by entertaining clients on a river, in a duck blind or hiking across Eastern Oregon farmland in search of upland birds. There may be only a handful of rivers in Oregon and Washington he never fished. In later years, Gil expanded his horizons, taking fishing trips to Canada, Alaska, Belize, The Bahamas and Russia. A faded wooden duck decoy that was a gift from his father put Gil on a decades-long quest for antique decoys that decorate his Portland home and the family cabin on the Trask River. And many have been blessed with his handcrafted gifts - trivets made of corks from wine bottles and arranged feathers from the many wild turkeys that fell victim to his shotgun.

Gil is survived by five siblings, three children and eight grandchildren. He was preceded in death by his wife Emily in 1981, and son Tom in 2002. There will be a viewing from 11 a.m. to 5 p.m. Saturday, May 22, 2010, and again at 9 a.m. Monday, May 24, in Skyline Memorial Gardens, 4101 N.W. Skyline Blvd., Portland. A celebration of life will follow the viewing at 11 a.m. Monday, May 24. The service will consist of stories from those touched by Gil's life. The family hopes you'll be ready to share a story. In lieu of flowers, remembrances may be made to The Arc of Oregon.

Disability Action Coalition Protest Budget Cuts

Disability Action Coalition Hosts Annual Disability Capitol Action Day,
Recognizing 20th Year Anniversary of ADA

Disability rights advocates (1500 – 2000) highlight proposed budget cuts that would drastically set back decades of civil rights gains

WHAT:    Disability Capitol Action Day

WHO:      Disability rights activists; Disability Rights Education & Defense Fund Senior Policy Analyst, Marylou Breslin

WHEN:    May 26, 2010 -- March towards Capitol begins at 10:30 a.m., rally on west lawn until 3 p.m.

WHERE:  March at 10:30 a.m. begins at 15th and L and assembles on the west lawn of the Capitol.

SACRAMENTO -- In one of the largest cross-disability events in the nation, the California Foundation for Independent Living Centers (CFILC) will host the 7th annual Disability Capitol Action Day this Wednesday. CFILC will stand in solidarity with disability advocates to recognize the 20th anniversary of the Americans with Disabilities Act, the disability community’s civil rights act, on the West Steps.

The event comes on the heels of the Governor’s May budget revision, which threatens to slash funding and entirely eliminate programs that provide services and supports for children and adults with disabilities.

“The severe threats the State Budget presents to our ability to work, go to school, and live independently make it all the more important that people with disabilities raise our voices to let our elected officials know that people with disabilities are a vital part of California’s communities,” said Jessie Sandoval, Consumer Advocate.

“It’s particularly fitting that we gather at the Capitol to celebrate the 20th anniversary of the landmark Americans with Disabilities Act,” said Teresa Favuzzi, Executive Director of the CFILC. “On this day, we remember the disability community’s leadership in achieving passage of this landmark civil rights bill, and we commit ourselves to continue the fight for full inclusion in schools, workplaces, and community activities.”

Joining today’s Disability Capitol Action day are dozens of youth leaders from the disability community who represent the next generation in disability rights activists.  Earlier month, these youth leaders achieved Assembly passage of a landmark resolution that would recognize the significant advancements in civil rights achieved by the disability community and encourage schools and colleges to incorporate disability history into their classroom activities. ACR 162 authored Asm. Jim Beall D-San Jose, would designate the second week of October as Disability History Week.

Wednesday’s event will begin with a march towards the West Steps of the Capitol, followed by prominent speakers from the disability rights community and those instrumental in fighting for rights, programs, and services that make it possible for people with disabilities to live independently.  The Arc of California is among the participating organizations.

Bipartisan Senate Bill Aims to Take 'Retarded' Out of Federal Lexicon

Bipartisan Senate bill aims to take 'retarded' out of federal lexicon
By Julian Pecquet - The Hill - 05/23/10 05:41 PM ET 

Senators are preparing to eliminate all references in federal law to the terms “mental retardation” and “mentally retarded individual.”

Rosa’s Law, which will be marked up on Wednesday, would replace those terms with “intellectual disability” and “individual with an intellectual disability.”

Sen. Barbara Mikulski (D-Md.) introduced the bill last November after promising a constituent she would act if the Maryland legislature passed a similar law. The Maryland law passed unanimously, and Gov. Martin O’Malley (D) signed it into law last year.

The bill is named after Rosa Marcellino, who has an intellectual disability and whose family was instrumental in passing the Maryland law.

It will be marked up in the Senate Health, Education and Pensions (HELP) Committee this week and is considered non-controversial legislation.

Attention to the word "retard's" hurtful consequences has taken off in recent years, thanks in part to the outspoken former Alaska Gov. Sarah Palin, whose son Trig has Down syndrome. Palin called for White House Chief of Staff Rahm Emanuel to be fired earlier this year after he called liberal healthcare activists “f-----g retarded,” but she has been less forceful when conservatives such as talk radio show Rush Limbaugh have used the term.

Rosa’s Law would benefit all children “who are labeled, stigmatized, and bear a burden the rest of their lives because of the language we use in the law books,” Mikulski said in her floor statement when she introduced the bill.

“It is a much needed change in the law that is fully deserving of our support,” said co-sponsor Mike Enzi (R-Wyo.), who followed Mikulski on the floor.

Rosa’s Law has 42 bipartisan co-sponsors in the Senate, including health committee Chairman Tom Harkin (D-Iowa). The House version, introduced by Rep. Michael McMahon (D-N.Y.), has 30 co-sponsors.

"This bill, as I can assure all who might be concerned, will not expand nor diminish services, rights or educational opportunities,” Mikulski said.

And the American Psychological Association, which pays special attention to how mental conditions are named and described, has no issues with the bill either.

“APA has no concerns with this and most disability-related language has changed from mental retardation to the more PC [politically correct]  ‘intellectual disability’,” Anju Khubchandani, director of the APA’s Office on Disability Issues, said via e-mail.

Khubchandani pointed out the APA’s Division on Mental Retardation, which connects experts in that field, has been renamed to Division on Intellectual and Developmental Disabilities.

“However,” he wrote, “APA does not have an official endorsement one way or the other.”

Asked about the bill’s prospects on the Senate floor, a Mikulski spokeswoman said: “We’re currently focused on passing the bill out of committee. We’ll consult leadership after next Wednesday and hope that the strong general, and bipartisan, support will support our case to move to final passage.”


People With Disabilites Face Hard Choices as States Slash Medicaid

FLORENCE, S.C—Tandem forces of shrinking state budgets and rising health-care costs have collided and struck a small brick ranch house in this rural town, home to Barbara Hickey.

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

After several days of reduced care, the local office of the South Carolina Legal Services appealed the cuts on behalf of Ms. Hickey. Her hours have been restored pending the appeal.

Home health care—funded largely by Medicaid—generally costs less money than institutionalizing developmentally disabled people like Ms. Hickey. But the political reality is that it's easier to cut back home services than to close a 24-hour facility, which can leave people with nowhere to go. Thus, some of the biggest cuts around the country are happening in the basic services that help the disabled cope at home.

South Carolina says it has little choice but to cut funding for Medicaid. It faced a $563 million deficit for the current fiscal year, and like other states must have a balanced budget. Medicaid, the joint federal-state health-insurance program for the poor and disabled, already consumes about 20% of its $5 billion budget and is one of its fastest growing costs.

The health-care program is on course to consume 40% of the budget of South Carolina in five years, and leaves little for anything else, says Gov. Mark Sanford. "It could force legislators to either cut further into bone in the areas of education, law enforcement and economic development, or raise taxes. Neither option is palatable."

The state already is making painful cuts elsewhere. The state's Department of Juvenile Justice has closed five group homes and cut 25 after-school programs. There are 1,000 fewer public-education teachers this school year than last.

Across the country, budget-strapped states are focusing on Medicaid. Created in 1965, it is now a $379 billion program, including state and federal funds. State spending grew an average 7.9% in fiscal 2009 as the economic crisis hit and more people signed up for Medicaid.

It was the highest growth rate since the last downturn six years ago. Spending is expected to keep growing at that pace for the next decade because of rising costs and growing enrollment.

But states don't have much flexibility when it comes to what they can and can't cut inside Medicaid. Although it is a state-managed system, the federal government pays a percentage of each state's total costs and makes many of the Medicaid rules. Under federal Medicaid law, states must offer inpatient and outpatient hospital care, X-rays and lab services. They also have to cover nursing-home services and meet certain standards, such as staffing ratios.

There are further constraints this year. States can't reduce Medicaid eligibility this year because of a condition attached to federal stimulus money, and under health-care reform, they can't eliminate existing programs.

States also run up against other laws when they make deep cuts. Lawsuits have been filed in South Carolina, Florida, Connecticut, Virginia, Mississippi and New York, claiming Medicaid cuts make it impossible for those with disabilities to live at home and that it violates the Americans with Disabilities Act.

Logically, states would cut the most expensive, least efficient services and keep the most cost-effective. But because of mandates and the need to save money quickly, that isn't as easy as it sounds.

For example, home care—because relatives often provide some of the care—is generally cheaper than housing people with developmental disabilities in institutional facilities. In 1993, the average Medicaid cost for each person with disabilities was $48,500. At the end of 2008, the latest figures available, it cost an average $55,000. Adjusted for inflation, that actually represents a 23% decrease, largely as a result of more services being shifted away from costly institutions to the home, says Charlie Lakin, director of a University of Minnesota program that tracks services for the developmentally disabled.

But many in-home services, though critical to those receiving them, are optional. Furthermore, there aren't many minimum standards set for in-home services, so it's easier to cut them without violating funding requirements. There are fewer immediate consequences for the state when it cuts those services because families won't generally abandoned disabled relatives and leave states on the hook for housing.

Cutting home care could ultimately prove penny-wise and pound-foolish, however. It could push more people into institutions or large group homes because that is where services are guaranteed, even though institutional care is more expensive.

Although only about 10% of the Medicaid budget goes to treat the 618,000 developmentally disabled Americans— the same percentage as a decade ago—average spending for each person is more than 10 times higher than for all Medicaid recipients. "Since their services cost the most per person they draw attention," says Mr. Lakin.

New Mexico has cut cash assistance payments for low-income disabled residents by one-third. Vermont and California have made cuts to home-based programs for the disabled.

Some of the biggest cuts are coming in South Carolina. Tax increases are particularly hard to pass here, so lawmakers rely largely on spending cuts to balance the budget.

Since 2008, the Department of Disabilities and Special Needs has lost 28% of its base funding, eliminated physical, speech and occupational therapies and capped the amount of diapers and nutritional supplements provided to people living at home. Seven group homes were closed.

The department's fiscal problems have been exacerbated by past spending decisions. A special state audit released in December 2008 showed that the department hadn't provided many new services for which it had received funding and, as a result, it couldn't recoup millions in federal matching Medicaid dollars. For example, the state spent less than $700,000 of $10 million allocated to serve autistic children, which resulted in the loss of $13.6 million in federal matching money. The state said it couldn't ramp up the program fast enough because it couldn't find qualified service providers. After the audit, the executive director of the department and four of the department's seven commissioners resigned. The department has since implemented most of the recommendations made by the Legislative Audit Council.

Recent state cuts have targeted developmentally disabled people living at home. In December, families were told that some of their in-home support was being cut by as much as half.

Brian Phillips, a 37-year-old with cerebral palsy, was told that he was losing half of his personal-care hours. He can work a TV with a remote control but can't dress or feed himself, or get in and out of his bed or wheelchair.

He lives alone with his father, James, 70. The elder Mr. Phillips, who has had open heart surgery and whose heart functions at only 26% of its capacity, cannot lift Brian on his own. He appealed the cuts and the hours were restored pending his appeal.

"These are cuts no one wants to make. They are very difficult for agencies to implement and they are very upsetting and very, very difficult for our families," says Lois Park Mole, spokesperson for the state Department of Disabilities and Special Needs.

People will generally do what they must to keep their disabled family member at home regardless of the cuts. At some point, however, even the most dedicated may not be able to continue, especially as their own health deteriorates.

Jimmy "Chip" Eubanks of Clinton, S.C., has severe cerebral palsy, but doesn't have mental retardation. "My mind works fine," he says. The 37-year-old has a full life at home. He can drive his motorized wheelchair with his mouth and use a computer with a stick-like device attached to his head. During the football season, he writes notes to the Clinton High Red Devils team and prepares plays for them. He hasn't missed a game in 18 years.

"My biggest fear is having to go to an institution," he says.

His parents were able to take care of Chip on their own until about three years ago when Linda Eubanks, now 68, had a brain aneurism. Already diabetic, the aneurism further compromised her health. She is nearly blind and in a wheelchair.

She can't see well enough to drive, use the stove or feed her son. Her husband has a bad back and can't lift Chip, who is 6 feet tall and weighs 185 pounds.

The couple relies on Amber Plaia, a certified nursing assistant. Ms. Plaia gets Chip out of bed, bathes, dresses and feeds him. She takes him to doctors' appointments.

In the evening, Chip's uncle, who lives nearby, can put him into bed most nights. Otherwise, Chip sleeps in his wheelchair.

Chip's personal-care help—essentially Ms. Plaia—has been cut in half to four hours a day. He appealed and his hours were restored pending the appeal. He, and three others, have filed suit against the state, saying the cut violates the Americans with Disabilities Act.

In some parts of the state, personal-care workers are paid $12 an hour and respite-care workers about $8 an hour.

Families said that isn't always a feasible option. Respite-care workers aren't expected to bathe people or clean breathing tubes, and families say it can be hard to find qualified ones.

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says waiting lists for services are growing. There are more than 5,000 on waiting lists for various services, from residential programs to in-home programs.

"We want to give families hope to keep their family unit together, but in reality there is very little we can put in place to assist them," says Mr. Courtney.

In-home support is cheaper, he says, than the alternative: group homes and larger residential programs that need to be maintained and staffed 24 hours a day. "But you can't put people out on the street," he says. "You can cut in-home support."

Even though Ms. Hickey lives alone and needs help with nearly every aspect of daily living, it cost less to have her live in a house with 50 hours of personal care help than in a nursing home. Institutional care in South Carolina costs about $100,000 per person a year, compared to $39,000 for home and community services, according to the University of Minnesota research.

There are other considerations. Though disabled since birth, and barely able to read or write, Ms. Hickey is aware of her surroundings and her situation.

She enjoys being able to go outside the back door, which is equipped with an automatic opener, onto a porch. She can ride her motorized wheelchair down the street to Burger King. She doesn't want to live in a nursing home, institution or group home. "I'm not losing my mind. I just don't have a body to do things other people can," she says.

The cuts for the developmentally disabled are almost certain to bite deeper in the future. Part of the federal stimulus money this year was designed to prop up Medicaid. The federal infusion disappears for the fiscal year starting in July 2011.

South Carolina faces an even bigger budget deficit of $1.1 billion when the one-time money runs out.

Write to Clare Ansberry at clare.ansberry@wsj.com

Ann Cameron Caldwell Joins The Arc to Lead Philanthropic & Research Initiatives

Ann Cameron Caldwell Joins The Arc to Lead Philanthropic & Research Initiatives

Washington, D.C. – Ann Cameron Caldwell, Ph.D., has joined The Arc of the United States as the new Chief Research and Innovations Officer.  Dr. Caldwell will be responsible for advancing The Arc’s mission at national and local levels through leading innovative growth and outcome opportunities in partnership with public agencies and philanthropic organizations, and implementing effective organizational metrics and knowledge management practices.

“Ann Cameron is widely respected in the disabilities field; she brings a wealth of experience in forging partnerships with philanthropic organizations, public agencies and others on behalf of people with disabilities.  Her background in these areas and in academia will serve to strengthen and support The Arc’s continuing growth and momentum,” said Peter V. Berns, CEO of The Arc.

Prior to joining The Arc, Dr. Caldwell was Assistant Vice President for Grant Development at Easter Seals, Inc., a post she held since early 2007.  In this role, she led grant development activities for the national headquarters in federal and foundation arenas, and contributed to the organization’s strategic development and knowledge management efforts.

Previously, Dr. Caldwell was an independent consultant to nonprofit organizations in strategic development and program evaluation.  She obtained her doctorate in Disability Studies from the University of Illinois at Chicago in 2005, where she also was project coordinator of the Rehabilitation and Research Training and Technical Assistance Center on Aging with Developmental Disabilities, funded by the National Institute of Disability Rehabilitation Research.  Dr. Caldwell received her Master’s degree from The University of Chicago in 2000.  She is also the parent of a teenager with Down syndrome.

The Arc is the world’s largest community-based organization of and for people with intellectual and developmental disabilities.  It provides an array of services and support for families and individuals and has more than 140,000 members with approximately 730 affiliated state and local chapters across the nation.  The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.

About The Arc of the United States
The Arc of the United States (The Arc) promotes and protects the human rights of people with intellectual and related developmental disabilities, from any of hundreds of specific syndromes and neurological conditions throughout their lifetimes. Together with our network of 730 state and local chapters, as well as our individual members, we support full inclusion and participation in their communities and influence public policy. For more information, please visit www.thearc.org

Should Colleges Grant Accomodations to Students with Learning Disabilities?

How Much Extra Time?
Inside Higher Ed - May 18, 2010

Another fight over extra time on exams has been temporarily resolved, leaving unanswered the questions of to what extent colleges should grant accommodations to students with learning disabilities -- and who decides what adjustments are appropriate.

This time the battleground was Princeton University, where first-year student Diane E. Metcalf-Leggette sued the university last fall, charging that it stood in violation of the Americans With Disabilities Act by declining to give her twice as much time as most other students to complete exams -- Metcalf-Leggette has been diagnosed with dyslexia and attention deficit hyperactivity disorder.

Metcalf-Leggette later registered a complaint with the U.S. Department of Education in February alleging that “the university retaliated by seeking additional information about [her] disability, questioning whether the student was qualified to attend the university and pursuing certain disciplinary action against the student,” according to department records.

The Education Department had already been investigating a similar complaint by another student, filed last November. That student says Princeton “failed to provide [a] student with a disability needed academic adjustments, such as extended time on tests, and failed to evaluate the student’s requests for academic adjustments,” according to the department.

Both complaints remain under investigation. The case of Metcalf-Leggette, however, has taken on a higher profile due to the lawsuit and the public filings that have opened the details of the case to scrutiny.

According to court documents filed by Princeton’s lawyers, Metcalf-Leggette requested special accommodations for her disability last August, two months after students were supposed to have notified the university of any special needs. While Princeton’s Office of Disability Services agreed to make certain exceptions for Metcalf-Leggette — such as allowing her to take exams in a room with limited distractions, allowing her to use a laptop, letting her take short breaks during long exams, and excusing her from taking more than one exam on a given day — they would not allow her to take extra time on exams, per the recommendation of a neuropsychologist hired by the university.

Metcalf-Leggette, who had lobbied for double the standard test-taking time allocated to non-disabled students (plus 10-minute breaks every hour), hired her own neuropsychologist to conduct an independent evaluation. Based on the second opinion, Princeton agreed to let Metcalf-Leggette take 50 percent more time on exams than most of her peers. But Metcalf Leggette insisted that anything less than twice the standard allocation would be inadequate, and declined to withdraw the lawsuit.

That is the version of events outlined in Princeton’s last court filing, a 35-page document largely devoted to denying charges of institutional bias against students with learning disabilities and other accusations levied by Metcalf-Leggette’s attorneys.

Metcalf-Leggette’s version of events could not be immediately obtained by Inside Higher Ed, and Metcalf-Leggette declined to be interviewed.

The legal saga came to a somewhat inconclusive end last Thursday, with Metcalf-Leggette dropping the suit in exchange for Princeton temporarily giving her 100 percent extra time on exams while the university assembles a task force to review its accommodation practices. Once that task force completes its review, the university reserves the right to reduce Metcalf-Leggette’s privilege back to 50 percent.

Sheldon E. Steinbach, former general counsel to American Council on Education, says he requires no task force affirmation to convince him of Princeton’s commitment to providing learning-disabled students with an appropriate level of accommodation. “The colleges and universities of this country … have bent over backwards to accommodate students that they have admitted to ensure that they have a successful academic experience,” Steinbach said.
In court documents, Princeton said it currently grants extra time on tests to 68 students. A spokeswoman told the student newspaper that the university allows some students 100 percent extra time for exams, though she said she could not provide further details for privacy reasons.

Acknowledging he has no inside knowledge of the case, Steinbach said he was inclined to doubt whether the medical opinion of the neuropsychologist hired by Metcalf-Leggette could be trusted as anything but an attempt to buy an undue advantage on exams.

“I could get you doctor by 4 this afternoon that would verify that you have an emotional disability that occurred over the weekend that will prevent you from handing in this article,” he said Monday in a phone interview.

“I would put greater faith on the university’s doctor, who has to make determinations of this kind on an ongoing, nonpartisan basis,” Steinbach said, “rather than someone who is hired on behalf of an individual who may just be in the position of advocating for her.”

The crux of the argument for being cautious on extra time is that granting it could be unfair to other students and erode the meaning of good grades. While federal law does apply, the government tends to defer to universities’ right to maintain their academic standards so long as “they’re not making up academic standards on the spot,” says Ann Franke, president of the consulting firm Wise Results LLC.

But Scott Lissner, chair of the committee on public policy and government relations at the Association of Higher Education and Disabilities, says that determining a point at which extra time begins to threaten academic integrity in any given case can be impossible to pin down with any precision. “I’m not sure how you make the distinction that 50 percent time does not undercut academic integrity and 100 percent would undercut academic integrity,” Lissner said. “That’s a pretty fine line, and it’s not distinct in science.”

Unlike certain standardized tests that have undergone a norming process with respect to standard completion time, most professors write their tests “by intuition and the seat of our pants,” said Lissner, who teaches at Ohio State University. Figuring how much longer a student should rightfully get to finish a test, given his or her particular inhibitions, he said, is a similarly inexact exercise.

However, there are ways it might be made more exact, says Howard Wainer, a research scientist for the National Board of Medical Examiners and a 1968 Princeton graduate.

Shortly after the news broke last fall of Metcalf-Leggette’s lawsuit against the university, Wainer wrote to the Princeton Alumni Weekly proposing a scientific approach to accommodating special-needs students more fairly. He suggested gathering data via a method of “low-dose extrapolation” often used in drug research.

“An exam should be given to students without disabilities who are divided randomly into groups that receive, say, one hour, two hours, three hours, etc.,” he wrote. “Then their average scores are plotted as a function of the amount of time they received,” Wainer continued. “This allows us to connect time with score, and thence to adjust the scores to what they would have been with unlimited time. Next, students with disabilities are provided unlimited time (if they request it). When we then use the adjusted scores, the field is level.”

— Steve Kolowich

Doctors' 'Right-To-Die' Efforts for Terminally Ill Patients Worry Advocates for People with Disabilities

Doctors' 'Right-To-Die' Efforts For Terminally Ill Patients Worry Advocates For People With Disabilities
By Arielle Levin Becker, The Hartford Courant
May 16, 2010

Cathy Ludlum says she has a great life, but since childhood she's been aware not everyone thinks so.

She remembers being 5, sitting in her wheelchair as people in the supermarket looked at her and shook their heads. She wondered how she could tell them she was not to be pitied.

Years later, in the hospital, Ludlum overheard the staff talking about her, assuming she led a tragic life in an institution, even though the medical chart said otherwise — she lived on her own and ran a consulting business despite a neuromuscular disease that took away her ability to move.

"People like me are at enormous risk when we're in the hospital or otherwise disempowered," Ludlum said.

Ludlum, 47, of Manchester, believes misconceptions about people with severe disabilities can lead medical workers to give them less aggressive lifesaving options. Doctors might think they would not want to live if they were in the patient's condition and assume the patient feels the same, she said. Or medical workers might see a disability as a fatal condition, even if it is not.

That makes her wary of an effort in Connecticut to let terminally ill patients end their lives through medication prescribed by doctors.Two Fairfield County doctors, backed by a national group, have asked a Superior Court judge to declare that state law does not prohibit doctors from prescribing lethal doses of medication to mentally competent, terminally ill patients who request it. They say doing so is not assisted suicide because the patient is already dying, making the question not if he or she will die, but when.

Ludlum and other advocates for people with disabilities are seeking to intervene in the case.

The concept — giving people in pain control over their dying processes — may sound sympathetic, Ludlum said. But she and other advocates fear the reality will be more complex, and could leave people who have severe disabilities vulnerable. They worry about the law being misapplied — for example, if a person with a disability asks for help dying but is not terminally ill — and about the ideas such a policy would foster about the worthiness of a life lived with diminished capacity.

Supporters of the doctors' position say that the case is not about disability, that there is a clear distinction between terminal illness and disability.

Jamie Mills, a Hartford attorney who represents the doctors, said she understands the fears disability advocates have and the problems they face in getting equal medical treatment.

"It's its own really serious issue, but different than this issue," she said.

Patient Stories
The doctors behind the lawsuit, Gary Blick and Ronald Levine, have been asked by dying patients for help ending their lives.

Court documents tell their stories. One patient, T.F., once worked as a bank president and ran marathons. He developed amyotrophic lateral sclerosis, or ALS, which left him struggling to breathe, swallow and move his extremities, and he worried about the suffering he would face while dying.

Another patient, J.P., worked as a Broadway costume designer before AIDS and a host of its complications forced him to give up his career. He was in such severe pain he "could not tolerate the feel of bed sheets on his feet," Blick said in an affidavit.

Ludlum said she has compassion for such patients. But she and other advocates for people with disabilities have a different perspective. And they cite different patients.

In an affidavit, Nancy Alisberg, managing attorney for the state Office of Protection and Advocacy for Persons with Disabilities, described three people she has represented who she said nearly died because of assumptions made about their disabilities.

One was a woman with a profound intellectual disability who had aspiration pneumonia and needed a feeding tube. But the woman's doctor did not recommend putting in the tube, worried that the woman might not accommodate it easily. The doctor's recommendation would have led the woman to starve to death, Alisberg wrote.

Another patient was a 15-year-old with a profound intellectual disability and a treatable form of leukemia. His doctors recommended against treatment, believing that the radiation treatment could hurt his cognitive functions and that he would not understand why he suffered the side effects of chemotherapy, she wrote.

More recently, Alisberg represented a woman who suffered a brain injury after a heart transplant. The woman's caretakers believed she had received her maximum level of rehabilitation, and although the woman expressed a desire to live, her parents decided she would not want to live with the level of disability she had. The woman's parents ordered that she receive only "comfort care," ending the use of anti-rejection treatment necessary from her transplant, Alisberg wrote.

Alisberg intervened on all the patients' behalf, and the patients received care. The first woman now lives in a group home and has a feeding tube. The boy's leukemia is in remission. And the woman with the heart transplant is thriving, Alisberg wrote, "acquiring new skills and in a loving relationship."

A Double Standard?
Claude Holcomb believes that if he were not a fighter, he would not be alive. The 49-year-old Hartford man has cerebral palsy and cannot speak, but gets around in a power wheelchair and communicates by pointing to letters on a board with the alphabet on it. He lived in an institution from age 7 to 22, and he believes that if he were not determined to live in the community, he might have been killed by doctors withholding treatment because of the nature of his disability.

Holcomb worries about people with severe disabilities who are unable to live outside long-term care facilities and consider stopping their life support. If doctors can help patients end their lives, he fears doctors would oblige a request — even if the patient is not terminally ill — rather than try to get the person the resources necessary to improve his or her situation. Some people with significant disabilities do not want to be a burden on society and could be particularly vulnerable, he said.

"We should not have a law telling or making someone choose to end their life because they might think it is easier than trying to get what they need to live a life with dignity and pride," he said.

Ludlum has a similar concern: If a patient expresses a wish to end his or her life, what would determine whether that person receives suicide-prevention measures or lethal drugs?

Although the lawsuit is intended for terminally ill patients, Ludlum believes it would be impossible to make a clear distinction between disability and terminal illness. She has friends who were infants when doctors told their parents they would not make it through the night. They survived and are now adults — evidence, she believes, that predictions of how soon someone will die, or whether a condition is fatal, are forecasts, not fact.

"It's a lot blurrier than people realize," she said.

Disabled Or Terminal?
Blick, one of the two doctors behind the lawsuit, said he empathizes with the concerns Holcomb, Ludlum and others have raised. Many of Blick's patients are disabled, and he agrees that they are at risk of being marginalized when doctors treat them based on opinions or judgments about their disabilities, rather than objective evidence.

But he sees a distinction between what he is seeking in the lawsuit and what the advocates fear could happen.

"This case is about the terminally ill cancer patient that has gone through all the chemotherapy, there's really no other therapies left for them, they're now in really agonizing pain and there's really nothing else for them to do except just wait it out and suffer from their pain," he said.

Kathryn Tucker, legal director for the national end-of-life care advocacy group Compassion & Choices, which is backing the doctors, said states typically define terminal illness in law. In Connecticut, statute describes a terminal condition as "the final stage of an incurable or irreversible medical condition which, without the administration of a life support system, will result in death within a relatively short time, in the opinion of the attending physician."

Blick offered another description of the difference.

"You can cope with and adapt to your disabilities," he said. "You can't adapt to a terminal illness when you've reached the end of the line and there's no other hope for you."

Who Dies, And Why
Tucker points to Oregon, where state law has allowed physicians to prescribe lethal medication to dying patients since 1998, to show that such a law does not disproportionately affect people with disabilities. Of the 460 people who died from the lethal medication between 1998 and 2009, 373 — 81 percent — had cancer. Thirty-five had ALS. Other conditions included chronic lower respiratory diseases and HIV or AIDS.

But advocates for people with disabilities see something else in the Oregon data.

Reports released annually by the state list the end-of-life concerns patients had. Ninety percent cited "losing autonomy" as a concern and 57 percent cited "losing control of bodily functions."

James McGaughey, executive director of the Connecticut office of protection and advocacy, say that might legitimizing disability as a reason for physicians to help a person end his or her life.

"What does that say about people who live with those disabilities all the time and how worthwhile their lives are?" he said. "Does this then ultimately lead to some greater cultural acceptance ... that says will people who have significant disabilities see their lives as not worth living?"

Control and Mortality
Compared to the general population of Oregon, those who died under that state's law were disproportionately white and more highly educated.

Public opinion polls have shown a similar dynamic: When asked if they support allowing a doctor to help a patient with an incurable illness commit suicide, people's answers vary considerably by race and education level. In Gallup polls conducted from 2003 to 2006, 60 percent of whites supported the idea. Among blacks, only 38 percent did. People who attended college embraced the concept at higher rates than those with less education.

Both Tucker and Ludlum say the differences in who seeks to die under the law reflect a key issue: control.

"If you look at all of the data, including the reasons why patients express that they want to have that choice, it really is about autonomy," Tucker said.

People who are used to having control over how their lives are lived — often, those who are highly educated and affluent — tend to be the people who want the same kind of control when it comes to death, she said.

Ludlum offered a similar explanation.

"People in that demographic group are used to saying 'no, I run my life, I get to decide what happens to me and I get to decide when I die,'" she said.

By contrast, people who have been marginalized or stigmatized, who feel their wishes have never been respected, often do not expect their wishes to be respected in health care and are not likely to seek a physician's help to end their lives, Tucker said.

Ludlum sees it another way.

"People who've had challenges all their lives anyway may be a little better equipped to deal with issues of disability, of illness, issues of mortality," she said.

Copyright © 2010, The Hartford Courant

Tougher Job Hunt for Special-needs Students

Tougher job hunt for special-needs students

By Christopher O'Donnell, Sarasota Herald-Tribune
Published: Friday, May 14, 2010 at 1:00 a.m.

Terry Davis was driving one of her special education students through Venice when she saw a new ice cream parlor that was preparing to open.

There was no "Help Wanted" sign, but Davis, who helps special education students find work, took the girl inside to ask for a job for her.

The owner told her 300 people had already applied.

Jobs like shop server used to be good hunting grounds for Davis and other school staff who help special education students find mostly low-skilled jobs.

But now, with unemployment at 13 percent, the students are competing with out-of-work adults desperate for any job.

In Sarasota, only 40 percent of special education students graduating in 2008 found work within six months of leaving school, down from 60 percent four years ago. In Manatee County that figure has fallen 21 percent over the same period, to 42 percent.

Special education teachers worry that after a few rejections, some students will give up looking for a career.

"Who would you hire now? The 30- or 40-year-old who has a family or the person right out of high school -- there's just no jobs out there," said Diane Roberts, a transition specialist with Manatee County School District.Students fall into the special education category for a wide range of issues. Some have development disorders like autism or conditions like attention deficit hyperactivity disorder. Others learn at a slower rate than most students.

Securing a job not only gives them an income, but boosts their sense of self-worth and independence. Many who did not enjoy school flourish at work where they are treated as adults.

"Kids who have found something they're good at, their self-esteem improves, their whole being improves," said Laura Lynch, special education teacher at Southeast High School in Bradenton.

That is what Allison Burch hopes for her son Alvin Ducre, a special education student.

Scheduled to graduate in June, Ducre wants to work in a fast food restaurant but currently has no job offers.

"He would be more independent; he would make his own money," Burch said.

Hiring people with disabilities also makes good sense for employers.

Customers respond well to companies that give opportunities to people with disabilities, surveys show.

And since they like security and routine, special education students are less likely to move on from entry-level jobs, said Tim Schoonmaker, director of Food Services for Sodexo at Manatee Memorial Hospital.

"They definitely stay for longer," he said. "They want to do that extra special job for you to ensure they have some tenure."

One way for special education students to get their foot in the door is an on-the-job training program that districts run in partnership with local companies.

Instead of classes, students work unpaid in the mornings, gaining work experience they can put on their résumé and showing prospective employers that they make good workers.

Southeast High student Jacob Kimball has a job offer from Sodexo after his work experience shift in a Manatee Memorial Hospital cafeteria.

Kimball cleans tables, refills napkins and restocks condiments. His conscientious approach has made him a favorite among staff there.

"I bet you he washes his hands 100 times a day," said colleague Myra McCray, smiling. "We love him. We don't want to lose him."

Lynch, Kimball's teacher, said the experience has given confidence to the student who previously avoided eye contact and clung to his backpack for reassurance.

"Now he's friends with the people he works with. He speaks to people at tables," she said. "His parents are thrilled."

But success stories like Kimball have become rarer because of hiring freezes and layoffs.

Special education teachers are hoping that more companies will step forward to give students a chance.

Otherwise, teachers say, some students will give up if they face too many rejections, leaving them dependent on their families and more isolated.

"If they don't get something through us, we lose them," Lynch said. "They will disappear into the sunset because we're the ones pushing them."

Study Challenges One View of Autism

Study challenges one view of autism
Thursday, May 13, 2010
By Mark Roth, Pittsburgh Post-Gazette

There is something obviously wrong in the brains of people with autism, and one of the chief symptoms of that is the difficulty they have in understanding other people's emotions and intentions.

But exactly what causes that social awkwardness is still being debated among neuroscientists -- and the debate only got sharper on Wednesday.

That's when scientists from New York and Pittsburgh published a study in the journal Neuron that concludes that one of the most prominent theories for what causes social problems in autism is flatly wrong.

The theory involves brain cells known as mirror neurons, which were first discovered in monkeys' brains about 15 years ago, and have since been identified in the human brain.

Mirror neurons are active not only when someone performs an action, like grabbing a cup, but when he sees someone else do the same thing.

That led to the idea that mirror neurons might be the basis of empathy -- understanding someone else's motives and goals -- and that notion was strengthened by some studies that seemed to show less activity in mirror neurons in people with autism.

The Neuron study, however, found just the opposite.

Lead author Ilan Dinstein, now a postdoctoral researcher at the Weizmann Institute of Science in Israel, along with three researchers from Carnegie Mellon University, one from the University of Pittsburgh and one from New York University, tested 13 adults with autism and 10 without the condition.

They put all of them in a magnetic resonance imaging scanner and asked them either to watch certain hand signals like the thumbs-up or rock, paper and scissors signs, or to imitate them.

The mirror neurons in both the autistic and non-autistic people's brains lit up just as strongly in the scanner while performing both tasks.

To prove the brain cells were reacting to specific hand motions, the researchers also gave the participants an "adaptation test" in which they were shown repeated images of the same hand signal or were asked to repeat the same motion. As with other brain cells exposed to repeated stimuli, the mirror neurons in both groups decreased in activity. But when the hand signals were varied each time, the cells leaped back to life, proving they were responding to individual signals.

The experiment did not dissuade advocates of the mirror neuron theory of empathy.

One of the leading scientists in that group, Marco Iacoboni of UCLA, told the magazine New Scientist that the small number of people in the new study made the results questionable, and said he stood by earlier research that showed autistic people had lower activity in mirror neurons.

If the mirror neurons aren't responsible for the social problems of autistic people, what is?One possibility, said CMU psychologist and study author Marlene Behrmann, is "noisy circuits" in the brain.

Work she and others have done shows that the connections between different parts of the brain are disorganized in people with autism.

One common symptom in autistic people is hypersensitivity to noise, light or touch, she said, and "that idea can be well captured by a brain system that has noisy circuitry."

The idea that autism is caused by a global brain problem also makes sense because it has such varied effects, including repetitive motions, lack of eye contact, language delay and obsessive, narrow interests, added Dr. Dinstein.

"We have to ask," he said in a video on the Neuron website, "could such a heterogeneity of symptoms be caused by a single malfunctioning set of neurons, or are they more likely caused by widespread abnormalities throughout the brain?"

Mark Roth: mroth@post-gazette.com or 412-263-1130.
Read more: http://www.post-gazette.com/pg/10133/1057866-114.stm#ixzz0nou3MyDn

Teen with I/DD Brutally Beaten for Cell Phone

Disabled Victim: Phone May Have Sparked Attack
9 Boston Teens Accused Of Beating Mentally Challenged Man
POSTED: 7:20 am EDT May 12, 2010

BOSTON -- A disabled teenager who was brutally beaten on a street near his home Tuesday said his cell phone may have been what sparked the attack.

Jerome Brown, 19, who is mentally challenged, was attacked at the intersection of Parkman Street and Dorchester Avenue about 4:40 p.m., left bloody and screaming for help. He said the attack was not random.

"They hit me in the face. My face was crashed up. I was OK. I got up, walked, but I was limping at the same time," Brown said.

He said he knew the attackers and said they may have wanted his cell phone.

"Over a phone, like, who wants a phone? Like, everybody has a phone ..." Brown said.

A witness said he was inside his home when he heard "awful screams" coming from the area and saw Brown curled up on the ground getting kicked and punched by a group of teens.

Nine people, including two juveniles, were accused of attacking the developmentally disabled man. At their court arraignment all denied involvement in the attack.

Police arrested Trevon Campbell, 17, of Dorchester, Johnny Clark Jr., 20, of Dorchester, Markees Finklea-Sonlyen, 17, of Dorchester, Jahsia Solomon, 18, of Roxbury, Stephen Goss Jr., 18, of Dorchester, Aldane Hall, 21, of Dorchester, Dillon Copeland, 17, of Dorchester, a 16-year-old boy and a 15-year-old boy, both of Dorchester.

"One of them tried to choke me. I got in a headlock," Brown said.

Emmett Folgert runs the Dorchester Youth Collaborative, the after-school program that both the victim and suspects attend. He was shocked that the teens have been accused of assaulting a mentally-challenged person -- a crime that carries double the maximum penalty because of the disability.

"Any of this violence is horrible. We're certainly going to work hard to stop this kind of thing. That's what we're all about," Folgert said.

Copyright 2010 by TheBostonChannel.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed. 

The Arc of MA: Closing Institution is Best for Residents

Sarkissian: Closing Fernald, at long last, is the best for its residents
By Leo V. Sarkissian/ Guest columnist
The Daily News Tribune - Posted May 11, 2010 @ 08:02 AM

The state's plan to close the Fernald Development Center in Waltham on June 30 is ringing alarm signals in some quarters.

Most recently, it had been feared that when Fernald finally shutters its doors, the Tufts Dental School clinic housed on Fernald's grounds would close, too. The clinic's dentists and hygienists provide essential oral health services to more than 2,000 people with intellectual and developmental disabilities.

As was reported recently, Tufts University announced that the clinic would remain open another year while state officials craft a plan to accommodate patients at six other dental facilities throughout the state operated by Tufts. We applaud this decision.

However, from the outset, those who oppose Fernald closing - a component of Gov. Deval L. Patrick's Community First initiative to shutter sprawling, decrepit institutions and move their residents into community-based housing - have tried to make political hay over reports about the dental clinic. That the dental clinic would be collateral damage from Fernald's closure, they argued, was yet another reason to spare the archaic institution its overdue fate.

Not only did their argument fail to recognize the likelihood that the clinic's services would be made available at other Tufts clinics, but, more importantly, it ignored the fact that overall health care, shelter, food, employment and other services for people with disabilities is of superior quality and improved efficiency when delivered through a network of state-sanctioned, community-based homes and program settings.

Now the foes of shutting down Fernald and the five other institutions in the Commonwealth are pressing their case at the State House, with a budget amendment filed by Rep. Anne M. Gobi, D-Spencer that would delay the closing of the Waltham facility and several similarly outdated and under-populated institutions. Sadly, the House of Representatives has approved the amendment, undermining the commitment of the Legislature at large to community-based housing, as well as to the wise use of taxpayer dollars at a time of severe fiscal constraints.

The Arc, a Waltham-based statewide advocacy organization for people with intellectual and developmental disabilities, has weighed the arguments for and against closing Fernald and three other such facilities in Massachusetts by the 2013 deadline set by Governor Patrick and has concluded that the evidence in favor of closing them far outweighs the notion that their residents would be ill-served by placement in community-based homes.

One argument advanced in favor of maintaining the institutions derives from the belief that their residents are too disabled to live in the community. When such facilities have been closed in the past (Belchertown State School in 1992 and Dever Developmental Center in 2002, to name just two), more than 95 percent of the residents were found to have made successful transitions to community settings.

According to K. Charlie Lakin, a disability policy researcher, those who moved showed significant improvement in "overall adaptive behavior," self-care, academic ability, communication, socializing and other skills. By contrast, those who resided in large institutions, Lakin reported, "received habilitative experiences that were substantially and consistently inferior to those of people living in community settings."

Perhaps the most persuasive proof is to be found in the numbers. A budget analysis of maintaining the institutions has shown that the average cost of serving an institutionalized disabled individual is nearly double ($501-$548 per day) the cost of serving them in the community ($314 per day, including state- and privately operated homes and day/transportation expenses). Those findings are all the more dramatic when one considers that fewer than 100 people now live at Fernald, a multi-building, 180-acre spread that, from its beginnings in 1848, grew to be home to 2,600 people by the 1960s.

Indeed, Fernald originally was known as the Massachusetts School for Idiotic and Feeble-Minded Youth, and treatment of its "students" was truly deplorable. It has been well documented that physical and sexual abuse of the residents was widespread; some of them were treated as guinea pigs, subjected to "scientific" testing that involved being fed irradiated oatmeal. Conditions at Fernald were so bad that from 1972 to 1993 oversight of the facility was in the hands of the federal court in Massachusetts.

Those who argue that Massachusetts is rushing to close Fernald and other institutions fail to acknowledge that 140 such institutions nationally have closed since 1970 while Massachusetts has shut down only three; nine states and the District of Columbia have closed all their institutions. Per capita, this state has the 15th highest percentage of individuals living in institutions in the nation.

We at The Arc would be the first to admit that change is exceedingly difficult when those who have to make a change are people with intellectual disabilities. But, as advocates for those individuals, we would be remiss if we did not sound an alarm of our own - that the era of Dickensian, deservedly maligned institutions housing those who are least able to voice their objections to them must come to an end, beginning this June 30 at Fernald.

Leo V. Sarkissian is executive director of The Arc of Massachusetts.
Copyright 2010 The Daily News Tribune. Some rights reserved

Ruling: Henry's Cheated Workers at Atalissa Turkey Plant

Ruling: Henry's cheated workers at Atalissa turkey plant
By Clark Kauffman • ckauffman@dmreg.com • May 7, 2010
Des Moines Register 

Henry's Turkey Service shortchanged its mentally retarded workers by at least $1 million and subjected the men to abuse and humiliating forms of discipline, a federal agency has found.

The U.S. Equal Employment Opportunity Commission said the Texas labor broker acted with malice or reckless indifference in committing numerous major violations of the Americans with Disabilities Act, resulting in significant harm to the workers and "substantial economic benefits" to the company.

"What happened to the men employed by Henry's Turkey Service at West Liberty Foods is nothing short of horrific," Sen. Tom Harkin, D-Ia., said Thursday. "And what is particularly galling is that it was allowed to continue for so long. The EEOC appears to have documented a level of abuse more extreme than can be imagined in this day and age."

The EEOC findings could result in compensatory damages to make up for the workers' unpaid wages, or in punitive damages.  "I'm ecstatic about this because it means people are going to be held accountable," said Sherri Brown, the Arkansas sister of former bunkhouse resident Keith Brown. "The company took advantage of these men, and maybe now all of the other investigating agencies out there will step up to the plate and start doing something."

One of the company's owners, Kenneth Henry of Proctor, Texas, declined to comment Thursday on the findings. Over the past year, however, he has said the company is innocent of any wrongdoing.

For most of the past 34 years, Henry's acted as a labor broker, placing mentally retarded Texas men in labor camps around the country where they worked for sub-minimum wages. In Atalissa, Henry's housed at least 65 disabled men in an old bunkhouse and paid them 41 cents an hour to slaughter turkeys at the West Liberty Foods plant.

In February 2009, The Des Moines Register asked state officials about the bunkhouse, its lack of a care-facility license and the workers' wages. A dozen government agencies launched an immediate investigation, declared the bunkhouse unsafe and "deplorable," and relocated the 21 men still living there.

The commission's investigation focused on allegations that Henry's and its affiliate, Hill Country Farms, repeatedly violated the Atalissa workers' rights under the Americans with Disabilities Act.

Among the findings:

- Henry's collected up to $11,000 per week from West Liberty Foods as payment for the men's labor at the plant. Henry's then paid dozens of workers a combined total of $340 to $500 per week. Over the last three years of the company's operation, Henry's underpaid the men by at least $1 million, based solely on minimum-wage violations.

- The men's net pay for working at West Liberty Foods averaged 41 cents an hour, despite the fact that they often performed at a level equal to able-bodied workers who earned $9 to $12 an hour. When that is taken into account, the amount of underpaid wages is even greater than the $1 million attributed to minimum-wage violations.

- Henry's employees were subjected to a hostile work environment that included "verbal and physical abuse because of their mental disabilities." The men were "continually subjected to taunts, name-calling, humiliation and other offensive verbal conduct and mistreatment based upon their disability."

- Henry's restricted the men's contact with others and subjected them to "unusual, excessively harsh and often humiliating disciplinary actions." The company also failed to provide the men with "adequate access to medical care, all while taking advantage" of the men's vulnerable state.

- Although Henry's paid just $600 per month to rent the bunkhouse from the city of Atalissa, the company made roughly $10,000 worth of deductions from workers' paychecks each month for housing.

Sylvia Piper of Iowa Protection and Advocacy, an agency that advocates for the disabled, said the EEOC's findings are consistent with those of her own investigators.

"Even the term 'slave labor' doesn't fully describe what those men endured for the past 34 years," Piper said. "These EEOC findings are definitely what we have been waiting for. Now I think we need to hear from the Iowa Division of Criminal Investigation, as well as the FBI, about their criminal investigations."

Under federal law, once the EEOC determines that the rights of disabled workers have been violated, it must attempt to halt the violations through an informal process of "conference, conciliation and persuasion." The commission plans to send a proposed conciliation agreement - a settlement of sorts - to Henry's owners. If the owners reject the proposed settlement and refuse to negotiate, the EEOC has the option of taking the company to court.

EEOC officials declined to comment on the agency's findings, but said that a conciliation agreement in such a case could include demands for compensatory damages to make up for workers' lost wages or punitive damages designed to penalize companies for past violations.

Harkin said he hopes federal officials will continue to pursue the matter.

"It is my hope that the EEOC and the Department of Labor ... will act quickly to obtain financial security and at least a small measure of justice for these men," he said.

Muscatine County Sheriff David White said recently that he is confident the people who ran Henry's Turkey Service treated the bunkhouse residents well.

"Our take on it was, you know, that they were doing some pretty good things with these guys," he said

Other investigations

Fifteen months after its Atalissa operation was shut down by authorities, Henry's Turkey Service still faces sanctions or investigations on several fronts.
In addition to the Equal Employment Opportunity Commission, these agencies have been investigating the Texas labor broker:

U.S. Department of Labor: In November, the agency filed a civil lawsuit against Henry's and owner Kenneth Henry for alleged violations of federal labor laws. The lawsuit does not specify the damages being sought. The case is scheduled to go to trial in 2011.

Iowa Workforce Development: One year ago, this agency proposed $900,000 in civil penalties against Henry's, alleging the company made illegal deductions from workers' pay, failed to pay the minimum wage and failed to provide workers with pay stubs. Henry's appealed, which resulted in an administrative hearing last month. The administrative law judge who heard the case has yet to issue a decision.

Iowa Department of Inspections and Appeals: Fourteen months ago, the agency alleged Henry's had been operating the Atalissa bunkhouse as an unlicensed care facility. The department made a criminal referral to the Muscatine County attorney's office, which has not filed any charges in the case.

Iowa Division of Criminal Investigation: In October, after eight months of investigation, the agency turned over its findings to the Muscatine County attorney's office, which has not filed any charges in the case.

Federal Bureau of Investigation and Social Security Administration: Last spring, an investigator with the inspector general of the Social Security Administration, Sarai Fenton, traveled to Texas with FBI Special Agent Jim McMillan and Iowa Division of Criminal Investigation Special Agent Matthew George. They interviewed people tied to Henry's Turkey Service and collected information pertaining to disability payments the company collected on behalf of its workers. No charges or litigation have resulted from that investigation.

Texas attorney general: This agency seized hundreds of Henry's documents last spring. Some of those records relate to the company's controversial partnership with the state of Texas, which resulted in mentally retarded wards of the state being turned over to Henry's for training in the company's labor camps. The attorney general has not filed charges against Henry's and has allegedly refused to share information with some Iowa investigators.

Making Strides for People with Disabilities: Mr. Baker Goes to Washington

Making strides for people with disabilities: Mr. Baker goes to Washington
May 06, 2010, 8:47AM
Martin Griff / The Times of Trenton

TRENTON - A disabled Hamilton man walked straight into a controversy Monday when he embarked on a trek to the White House to support the closure of New Jersey developmental centers in favor of community placements for residents there.

Under a pair of identical bills being considered by New Jersey's Legislature, five of the state's seven developmental centers would close over the next five years, and most residents would move into group homes. By redistributing funds, the bills would aim to house more people and avoid institutionalization.

And while some families of center residents are against the change, 24-year-old Wayne Baker says he's all for it.

Before he left the Statehouse to embark on the walk he will turn into a documentary film, Baker, who has cerebral palsy, said the idea that people with developmental disabilities need to be institutionalized is a dated perception.

"Today, we have options, and it should be about giving the consumer the choice of where they want to be," the online college student, liquor store employee and filmmaker said. "I'm a disabled person and I live in the community, and look at all the things that I've done."

While Baker says he's "probably one of the highest-functioning disabled people that exists within our society today," he relates to the plight of those in developmental centers because, "regardless of how severely handicapped you are," he said, "you're still considered, according to the system, developmentally disabled."

But some family members of people in developmental centers say the move toward community placements will harm New Jersey's most "fragile and innocent" citizens.
Some people with physical disabilities are cared for at the centers.

However, most center residents are "profoundly and severely retarded" adults with no other options, many of whom are nonverbal and need their loved ones to speak for them, said Cindy Bartman, state leader of national Voice of the Retarded and president of an association for families and friends of residents at Hunterdon Developmental Center.

For some residents, leaving the facilities they know as their homes would be disturbing, said Bartman, whose brother has lived at Hunterdon since 1969.  In addition, she said, by leaving centers, residents would lose important therapeutic services that help them function at their highest capacity, and the convenience of having doctors, recreational facilities and even Special Olympics training on site.

Hamilton resident Donald Brutzman, whose son has been at New Lisbon Developmental Center for 22 years, added that the change would be hard on parents, many of whom are older and have moved to be close to their children.
It's a complaint Bartman has heard before.

"There was a survey recently undertaken by advocates for New Jersey developmental centers which questioned the families of the residents (there), and 96 percent of respondents opted for placement in the developmental centers versus community placement," she said.

The debate will be played out in public tomorrow when invited speakers weigh in on the issues during a meeting, hosted by the Senate and Assembly human services committees, in Committee Room 4 at the Statehouse Annex in Trenton.

About 2,800 disabled adults live in developmental centers in Green Brook, New Lisbon, Vineland, Woodbridge, Clinton, Totowa and Woodbine, according to a state Web site.

There are about 7,800 people on a waiting list to get into the facilities, the bills state.
There are no plans now to close the centers, except for the west campus of the Vineland facility in about a year, because it's inconveniently located, said Pam Ronan, a spokesman for the state's Division of Developmental Disabilities, part of the Department of Human Services.

And while officials at the DDD have not taken a position on whether the remaining developmental centers should be closed, they support the idea that disabled adults should live in the least restrictive environments they are capable of handling, and that the state should help put them in the settings they prefer, Ronan said.

Introduced in January by primary sponsors Assemblyman Louis Greenwald, D-Voorhees, and Sen. Joseph Vitale, D-Woodbridge, the bills state that the switch to community-based care would allow New Jersey to serve more people -- particularly those on the waiting list, living with their families, recommended for community placement, or transitioning out of school.

The bills call for an 80 percent reduction in the population of the centers and a moratorium on further placements there.  The state would retain a single developmental center in North Jersey and one in South Jersey.

To sketch out the details of the shift, including the reduction and transition of center staff, New Jersey would establish a Community Services Planning Council, and a steering committee to oversee the changes.

Funding to support community placements would come from money appropriated for improvements to developmental centers; reduced overtime and operating costs; proceeds from the sale of the centers; federal funds; and, through 2013, unspent dollars from the DDD's annual budget.

It's a plan that appeals to the New Jersey Association of Community Providers, a Ewing organization Baker has worked closely with since he decided to weigh in on the issue a couple of years ago.

On its Web site, NJACP claims that the DDD spends a third of its $1.3 billion budget to support only 8 percent of the people it serves -- and that more than 80 percent of those in the developmental centers don't need to be there.

The state is spending $259,150 a year, on average, for every person who lives in one of the centers, the NJACP argues -- although Ronan said the amount ranges from $139,000 to $230,000.

It's generally about 25 percent cheaper for a disabled adult to live in a community setting than in a developmental center, she said.

"Across the nation, for three decades, states have closed 140 institutions and restructured their services to support people living with developmental disabilities in the community," NJACP's Web site states. "We look to New Jersey to follow suit."

But according to Bartman, NJACP is supporting the bill because it will make money if the centers close and more people move into community care.  "They'd be contracted by New Jersey to offer services," she said.

Meanwhile, Bartman said, New Jersey communities would be hurting as center staff members lost their jobs.  But Baker said preserving the 8,000 jobs at the centers is no reason to keep people institutionalized.  "We can't continue to enslave people against their will in the name of these jobs," he said.

Over the past couple of years, Baker, a Nottingham High School graduate, has been compiling a video library of interviews with people who have left developmental centers and are happy about the change.

Recently, he interviewed two best friends who'd spent decades in the centers before moving out to live together in the community.  "They have a back yard, their own TV and they get Wawa hazelnut coffee, which they love to do," Baker said.  "It's typical activities like that that we're taking from them (by keeping them in centers)."

As he continues his walk toward Washington, D.C., Baker said he'll interview people on both sides of the community-placement issue.  He'll treat the 180-mile walk as what he calls a Search-U-Mentary, or search for knowledge, he says, posting videos of his experiences on his Web site, catatonicfilm.com.

"The walk's purpose is to present a new perspective on what developmentally disabled is, to fight the stigma placed on disabled people, (the idea that) they cannot possibly live in the community," Baker said.  "Everyone will get to see what a developmentally disabled person can do."

Yesterday, around 7 p.m. Baker and his film crew were making their way down Route 70 in Cherry Hill.

©2010 Times of Trenton © 2010 NJ.com. All rights reserved.

The Arc of San Francisco Reaches Out to LGBT's with Disabilities

Agency reaches out to LGBTs with disabilities
by Seth Hemmelgarn, Bay Area Reporter Online, 5/6/10

People with developmental disabilities who are lesbian, gay, bisexual, transgender, or questioning are often hidden within the larger LGBT community, and that's something one local organization wants to change.

The Arc of San Francisco, whose services include advocacy, housing, employment, and health initiatives for adults with disabilities such as Down syndrome and autism, is holding a benefit called Cirque de l'Arc on Thursday, May 13.

The event, which will include performances by clients, a drag show, and personal testimonials, is a fundraiser for the organization, which is facing some funding cuts. It should also increase awareness.

Kevin Roach, one of the clients who will be dancing and acting in Cirque de l'Arc, expressed mixed feelings about being around LGBTs who don't have developmental disabilities.

"I think they'd be probably not understanding unless they're really educated," said Roach, who is gay and will turn 53 the day of the event.

Describing himself as "an older guy," he said the larger LGBT community "seems like a little bit of a clique" and he doesn't think people will like him. However, he said he has met nice people in the community and he's looking forward to meeting more.

Roach said other people who have developmental disabilities don't discriminate against him because of his orientation.

"They're very accepting. ... We're all very close," said Roach, who has an intellectual disability.

Mark Kirk, who is the director of operations for Arc of San Francisco and will be performing as "Kitty Glamour" in Cirque de l'Arc, said that a recent incident helped inspire the show.

He heard a family member of a client yell, "What are you, a *#@# faggot?" apparently because the client had copied photos of shirtless men.

After that, it was apparent there was "a big need" to serve people who are LGBT or questioning and have developmental disabilities, said Kirk, who is gay.

Eliot Dobris, an Arc spokesman, said because of their disabilities, a lot of clients don't have the vocabulary or understanding to explore their orientation.

Dobris, Roach, and Kirk were interviewed this week at the Arc's airy, sky-lit building in the South of Market District.

Dan Cousins, who is gay and volunteers on the Arc's resource development committee, said in a phone interview, "The whole concept of sexuality for people with developmental disabilities can be a little uncomfortable," but "being uncomfortable doesn't give us the right to pretend they're not complete people with the same disabilities and ambitions in life that everyone has."

"No one should be hidden away," added Cousins.

Judging from a rehearsal this week, clients involved in Cirque de l'Arc don't intend to hide from anyone. Eight clients, along with Kirk, whirled and danced around the floor to the tune of Britney Spears's song "Circus."

After the song, Kirk praised the clients while telling one of them, "Just remember, do a few twirls in there.

Kirk said the Arc has done other shows, but this is the first time they've done a show for clients who have the cognitive issue of not knowing what their sexual orientation is. He didn't know how many clients in the show are LGBT.

Raising funds

The show should help give a boost to the Arc's finances.

The agency's 2009-10 budget is about $9 million. Eighty-four percent of its funding comes from the state. The rest comes from foundations and individual donors, as well as earned and rental income, according to Dobris.

Last year, state funding for the Arc, which supports more than 550 adults, was cut 3 percent. That cut remains in place, and an additional 1.25 percent reduction has been proposed.

In addition, the rates the state pays the Arc for providing services to its clients have not changed since the early 1990s, and don't account for the higher costs of an area like San Francisco, Dobris wrote in an e-mail.

He also wrote the additional cut "would make it harder for the Arc to provide employment, health, and housing services. But the Arc will attempt to make up the difference by fundraising around these cuts."

Dobris noted that "other, smaller organizations will likely close and that means the individuals they serve won't get the housing, employment and health services they need."

Among other activities, the Arc has started working with the city's LGBT Community Center on ways to train Arc staff on topics such as tolerance, dealing with harassment, and coming out. The staff will share what they learn with clients.

Cirque de l'Arc, which features honorary chair Supervisor Bevan Dufty and performances by Bay Area Reporter society columnist Donna Sachet and others, begins at 7 p.m. at the Arc of San Francisco, 1500 Howard Street. Tickets are $100 in advance.

For more information, visit http://www.thearcsf.org.

Dr. Greenspan, Inventor of 'Floor Time' Teaching, Dies at 68

May 4, 2010 - The New York Times
Stanley I. Greenspan, Developer of ‘Floor Time’ Teaching, Dies at 68
By David Corcoran

Dr. Stanley I. Greenspan, a psychiatrist who invented an influential approach to teaching children with autism and other developmental problems by folding his lanky six-foot frame onto the floor and following their lead in vigorous play, died April 27 at a hospital in Bethesda, Md. He was 68 and lived in Bethesda.

The cause was complications of a stroke, said his wife, Nancy Thorndike Greenspan, who was co-author of several of his more than 30 books.

“Floor time,” as Dr. Greenspan called his approach, is used in special-education classrooms and clinics around the world, though it remains controversial — as do all early-intervention treatments for autism. An opposing approach that relies on strict behavioral goals and checklists has been more intensively studied and is more widely used in the United States.

Dr. Greenspan encouraged parents, teachers and therapists to get down on the floor with children, even very young ones, and engage them with gestures and words to build warm relationships and expand their world of ideas — many times a day, if necessary.

In a 2002 therapy-session video that can be seen on his Web site, he joins a mother and her distracted, barely verbal 22-month-old son on a rug strewn with toys, including a cardboard crown. After half a minute of unfocused play, Dr. Greenspan urges the mother: “Try to enter into his world a little bit more. So if he’s got the crown and he doesn’t want to put it on, you put it on. Say, ‘I’ll be the queen.’ ”

In a few moments the boy is putting the crown on his own head, his mother’s head and Dr. Greenspan’s head, and — to his mother’s surprise — using words and giggles to say what he wants.

The Harvard pediatrician and behavioral expert Dr. T. Berry Brazelton, a longtime colleague and co-author with Dr. Greenspan of “The Irreducible Needs of Children” (Perseus, 2000), said in an interview that unlike the standard behavioral approach, floor time “lets the child lead.”

“Stanley’s approach is more innovative and more sensitive,” Dr. Brazelton said, “and it’s gathering steam rapidly.”

Stanley Ira Greenspan was born June 1, 1941, in Brooklyn, and moved to Long Island as a boy. A star athlete at Long Beach High School — where he was a teammate and friendly rival of the future basketball coach Larry Brown — he overcame learning disabilities and was admitted to Harvard.

After graduating from the Yale School of Medicine in 1966, he did his residency in psychiatry at Columbia and joined the United States Public Health Service.

Floor time was part of a broader framework Dr. Greenspan developed in the 1970s and ’80s as a researcher at the National Institute of Mental Health. Studying the interactions of troubled mothers with their infants and toddlers — and videotaping and archiving the results — he came to believe that the building blocks of emotional and behavioral development were laid down much earlier than experts had thought.

“The notion of babies and young children as little adults still permeated public perception,” Dr. and Ms. Greenspan write in the introduction to their final book, “The Learning Tree: Overcoming Learning Disabilities From the Ground Up,” to be published in August by Da Capo.

Dr. Greenspan found that babies who fail to connect with their parents for whatever reason — developmental disorders, individual sensitivities like an aversion to being touched, or a parent’s inability to relate to the child — are deprived of emotional tools essential for learning and growth.

“Our emotions,” he said in an interview for “Autistic-Like: Graham’s Story,” a 2008 documentary by Erik Linthorst, “serve as the orchestra leader for getting the whole mind and brain working together.”

Floor time, he added, “is following the child’s natural interests and affect and emotions to get all this cooking.”

Dr. Greenspan founded or helped found a number of organizations devoted to early-childhood development, including the National Center for Clinical Infant Programs, now called Zero to Three, and the Interdisciplinary Council on Developmental and Learning Disorders.

Serena Wieder, a clinical psychologist who was the council’s co-founder, said Dr. Greenspan’s singular gift in dealing with little children “was to get that connection, that gleam in the eye.” Of the session with the 22-month-old boy, Dr. Wieder said the child “was watching Stanley as much as Stanley was watching him — the look, the gleam of anticipation, the two-way back and forth.”

Besides his wife, Dr. Greenspan is survived by two daughters, Elizabeth Greenspan of Boston and Sarah Greenspan of Silver Spring, Md.; and a son, Jacob, of Washington. A brother, Kenneth, also a psychiatrist, died in 1999.

Jacob Greenspan, 30, now runs a center in Bethesda for children with autism. He uses the floor-time approach, and Nancy Thorndike Greenspan said he learned about it early. In 1980, when the approach was being developed, Jacob was 9 months old. Though he had no developmental disorders, his father was eager to try the technique out.

“I was the first floor-time mom,” Ms. Greenspan said, “and he was the first floor-time kid.”

Parsing the New Law on Long-Term Care

Parsing the New Law on Long-Term Care
By Paula Span - May 3, 2010

Call it Senator Edward M. Kennedy’s final bequest.

The Community Living Assistance Services and Supports Act, or Class Act, the first national plan to help the great majority of Americans who have no insurance for long-term care, became law in March. Even though there was little fanfare — the measure was just one piece of the broader health care overhaul — the idea had been hugely important to Mr. Kennedy and his staff, who had been working on the current version of the plan since 2003.

The program underwent a number of changes during the health care debate, so some projections are now out of date. And many details have yet to be established by the secretary of health and human services, Kathleen Sebelius, who is going to be one busy woman for the next couple of years.

But we do know enough to answer some basic questions. Four experts helped respond to some of the many queries from readers on the New Old Age blog. They are Howard Bedlin, vice president for advocacy at the National Council on Aging; Barbara Manard, a health economist with the American Association of Homes and Services for the Aging; Jesse Slome, executive director of the American Association for Long-Term Care Insurance; and Connie Garner, who after 17 years is about to leave her job on the Senate Health, Education, Labor and Pensions Committee.

WHO’S ELIGIBLE? The simplest answer: Working people. Not those who are already retired (unless they continue to work part time), or nonworking spouses, or the unemployed. Participants must pay premiums for a vesting period of five years before they can receive benefits, and they have to continue working for three of those years.

Part-time workers are eligible, though they must earn enough each year to pay Social Security taxes, a threshold that is now about $1,200. The self-employed and anyone whose employer declines to offer Class Act coverage will also be able to sign up through a mechanism yet to be determined.

WHAT IF YOU ALREADY HAVE AN ILLNESS OR DISABILITY? You can still enroll, as long as you can work for three years and pay premiums for five. The law prohibits excluding people with pre-existing conditions like diabetes.

WHEN DOES IT START? The act takes effect next Jan. 1, but the health and human services secretary has until October 2012 to present the full rules. Experts expect enrollment to begin in 2013.

WHAT WILL IT COST? We’re all waiting for Ms. Sebelius and a panel to tell us. In November, the Congressional Budget Office assumed an average monthly premium of $123 (less for young enrollees, more for older ones).

That estimate is based on the assumption that only 5 to 6 percent of those eligible will participate. But that assumption may be conservative: Class is an “opt out” program, meaning that if your employer participates, you’re automatically included unless you decline. Premiums will be lower if there are more people in the risk pool.

WHAT WILL IT PROVIDE? A cash benefit, to be determined by Ms. Sebelius. The Congressional Budget Office assumed a cash benefit of $75 a day, available once a participant needed help with two to three activities of daily living (eating, bathing, dressing, using the toilet, transferring from bed to chair to wheelchair, continence care) or the equivalent amount of assistance required because of cognitive impairment. The law says the average minimum benefit must be at least $50 a day. Once you qualify, those benefits continue as long as you need care. Remember that about 40 percent of the people receiving long-term care are not elderly; they’re young people who have accidents or develop chronic illnesses, so a lifetime benefit can mean many years of payments. And yes, those benefits will rise with inflation.

Isn’t that — as Laurs2 from Florida commented in the blog — a “pitifully inadequate” amount?

The Class Act was never intended to pay the full cost of 24-hour home care or a nursing home. But many disabled people can stay out of nursing homes, or delay admission, with moderate levels of assistance that supplement family care.

Even $50 a day could bring in a home care aide for a few hours to help with bathing, laundry or meals. It would also pay most of the cost of an adult day program ($67 a day). Nationally, the average cost of an assisted-living facility was $37,572 last year, according to the annual MetLife Market Survey; a $75 daily benefit would pay almost three-quarters of that.

HOW WILL IT BE PAID FOR? WON’T PREMIUMS AND COSTS INEVITABLY SOAR? The law specifically states that no tax dollars shall be used to support it; the premiums it takes in must pay for the benefits it pays out.

Since this represents the country’s first effort at public long-term-care insurance, we can’t say with assurance whether the optimists who helped get the law passed or the pessimists who tried to derail it are correct.

“It hasn’t been tried,” said Ms. Manard, the economist. “But what we have tried isn’t working. We have to try something new.”

WHAT IF SICK AND OLD PEOPLE SIGN UP FOR COVERAGE BUT YOUNG AND HEALTHY PEOPLE DON’T? This phenomenon, known as adverse selection, is a legitimate worry. People whom no private insurer would accept — who already have diagnoses of, say, multiple sclerosis but can work part-time for three years — are sure to jump in. They’d be foolish not to. But that is a problem only if too few others sign up and pay premiums.

So a marketing campaign for the Class Act will take aim at the young and the healthy — many of whom will also unexpectedly need long-term care insurance.

Mr. Slome, who heads the insurance industry group, says that the law is a Trojan horse, that the government will eventually convert it into a tax-financed entitlement program. “Inevitably, it will morph into Medicare Part E,” he said. Though the law prohibits the use of tax dollars, Mr. Slome said, “If you’re 30 today and you think the rules aren’t going to change in 50 years, you’re living in a state that’s legalized marijuana.”

WHAT’S THE OUTLOOK? Long-term care insurance rarely comes cheap. Either you buy it earlier in life and pay less per year — but for more years — or you buy it later in life and pay much higher premiums. But it’s far more expensive not to have it. Two-thirds of older Americans will need long-term care, the best projections indicate.

In a way, the Class Act will give the country an option as appealing or as unattractive as we deserve. If we understand that paying for long-term care is largely a personal responsibility, then large numbers of people will buy insurance through the Class Act, which becomes a sustainable, affordable and helpful program. If too many people close their eyes and shrug their shoulders, trusting that their children or Medicare or God or someone else will provide, the Class Act will run into trouble. And so will they and their families.

This is the fourth in a series of articles on how the health care overhaul will affect everyday lives. This week’s author, Paula Span, writes the New Old Age blog, at nytimes.com/health.

Fate of Fernald: Is Closing the Right Call?

Fate of Fernald:  Is Closing the Right Call?
By Jen Judson/Daily News staff
Daily News Tribune
Last update May 04, 2010 @ 11:20 AM

WALTHAM — Dorothy Rouleau said her sister Margaret used to cry when her family would leave after visiting her at the Walter E. Fernald Developmental Center on Trapelo Road.

"After Judge (Joseph) Tauro stepped in, my sister no longer cried," said Rouleau, referring to the landmark Ricci case that drastically changed institutions like Fernald in the mid-1970s and 1980s.

Rouleau's sister arrived at Fernald in 1948. Fernald, she said, has become Margaret's home, the people there her family.

The state, though, has said it intends to close Fernald permanently by June 30.

Many guardians of residents fear they will have to move their loved ones to unfamiliar and unsuitable places.

At a legislative breakfast a week ago at Fernald, Rouleau showed legislators and friends and family of residents a blown-up photograph of a man wearing a red helmet and a woman sitting next to him.

"This is Evelyn and Jimmy. Jimmy wears a helmet because he smashes his head against the wall. He can't talk and somebody that would not know Jimmy would say he is not responsive," said Rouleau. "They are having a conversation."

Rouleau said this quality of patient care is threatened if Fernald closes. Some staff members have worked with the same residents for more than 20 or 30 years.

Thomas Frain, president of the Massachusetts Coalition of Families and Advocates, said keeping the 95 residents now at Fernald allows them to receive dedicated care at a reasonable cost.

Since Gov. Deval Patrick announced in 2008 that he would close all state institutions, the coalition of families and advocates has tried, with the help of legislators, to push amendments through the Legislature that would prevent the closing.

According to the Arc of Massachusetts, which works for people with developmental disabilities, the state is falling behind the national curve in closing institutions.

The country is re-directing toward "smaller, more integrated community-based settings," according to a fact sheet regarding state institutions from Arc.

"We have been trying to close institutions for 20 years and it's been a very slow, almost glacial process," said Leo Sarkissian, Arc of Massachusetts executive director.

Sarkissian said documentation by Michael Sullivan, a court-appointed monitor, filed in 2007 during the appeal process for the closing, supports Arc's argument for community living.

In the post-placement satisfaction survey given to guardians of those transferred, 78 percent gave the highest rating for their approval of moving to a group home; 14 percent gave a favorable rating.

Arc said state institutions are eating up a disproportionate amount of state dollars for a smaller number of developmentally disabled people. It costs $570 a day for someone to live in an institution, while it costs the state $293 per day for a 24-hour, community-based service.

Frain, at a recent Fernald legislative breakfast, said it costs about $36,000 a year for each resident at Fernald, according to a study conducted by an employee of another state institution.

Arc has argued that community living provides the highest quality of services, no matter the level of disability, and that the majority of residents make positive transitions.

"Our position is people with intellectual disabilities do better in the community. Historically, Fernald made sense and it just doesn't anymore," said Sarkissian.

"Basically homes in the community are designed very differently depending on who's living there," he said.

It is increasingly difficult for aging guardians to fight for their loved ones, said Kathy McMenimen, a neighbor of Fernald for 40 years and the co-chair of the Fernald Board of Trustees.

For some guardians, if residents are moved to Wrentham, it will be too difficult for them to visit their relatives or to bring them home for visits.

Marilyn Meagher, 68, can be at Fernald in five minutes. Her sister Gail Arone, 60, who has Down syndrome, has lived there since 1954.

"I don't think it's going to close June 30," said Meagher. "But I don't think you are going to see anybody at Fernald on Sept. 1."

"I think the department is working diligently in trying to move people," she said of the Department of Developmental Services.

The remaining residents will probably need to be consolidated, said Meagher. This does not take into consideration their compatibility.

Last Sunday at a church service at Fernald, an altar server, a former Fernald resident, spoke, Meagher said.

He stood for a minute trying to compose himself, said Meagher. Then he started to cry, thanking everyone for the friends he had made at Fernald and saying that he was going to miss them.

"It was the most touching thing that I have ever seen," she said. "For the residents that understand, those are the ones that my heart breaks for."

Jen Judson can be reached at 781-398-8004 or jjudson@cnc.com.
Copyright 2010 The Daily News Tribune. Some rights reserved

Down syndrome Families Aging Together

Down syndrome families aging together
By MARTIN DeANGELIS, Staff Writer | Posted: Sunday, May 2, 2010 |

From the time Kenny Sigmund was born, his big sister remembers their mother saying two things about him.

One was that doctors told the family they shouldn't even take the baby home. He had Down syndrome, and the professional advice was that their best move was to send him to live in a state institution. Their parents decided to raise their only son in their Brigantine home.

But the other thing Pat Gibson always heard was that no matter what his parents did, Kenny would likely have a brief life.

When he was born, statistics put Kenny Sigmund's life expectancy at less than 25 years. His next birthday will be his 50th and his chief caretaker says his health is still good, so she expects him to have many more years.

The average life expectancy for people with Down syndrome has gone up to about 60 years, the National Down Syndrome Society says - up sharply from the 25-year life span projected in 1983. But while the longer lives are cause for joy among the families of more than 400,000 people with Down syndrome in the United States, the increase in longevity is also producing new worries and challenges for those families who are aging along with them.

Dr. Brian Skotko, an NDSS board member and the chairman of its clinical advisory board, can't even say what the normal life expectancy was for a baby with Down syndrome when Kenny Sigmund was born.

"We don't do a good job counting now, let alone back in (1961)," Skotko says. But it's safe to say the projection would have been "less than 25 years," adds Skotko, who's also with the Down Syndrome Program at Children's Hospital in Boston.

He and other experts say the big breakthrough leading to longer lives was the discovery within the past 30 years of a heart condition in about half of all babies born with Down syndrome - followed by an effective surgical fix for it.

Pat Gibson, who was 7 when her brother was born in 1961, is also convinced that ending the common practice of institutionalizing babies with Down syndrome also added greatly to the length of their lives - not to mention the quality of those lives.

"A lot of people didn't get very good care" in the state-run institutions, says Gibson, a special-education teacher in Egg Harbor Township who credits that career partly to a lifetime of experience dealing with her brother. "But that whole idea was changing, and people weren't just going to put their kids away as soon as they were born. So the quality of care is better and more is known about it and people don't just give up right away."

Gibson took Kenny into her family's Egg Harbor Township home in the early 1990s, when their mother, who has since died, became too sick to care for him. The two share a home off Somers Point-Mays Landing Road, near the Great Egg Harbor River, with Gibson's husband, Ed, and their two sons, Jon and Glenn.

She calls Kenny a "blessing to us all" - he lived with them for much of the time she was raising the two boys and their older sister, Becky - but she says he adds a lot of work to the family's routines.

"We don't like to leave him here alone too long, and he couldn't catch a bus by himself or anything," says Gibson, who compares her brother's mental capabilities with those of a 4- or 5-year-old - although he is far less verbal than most kids that age, and seems to be speaking less and less as he gets older, his sister adds.

He cannot cook for himself and when Gibson wants his hair combed for pictures out in the backyard garden where Kenny likes to sit on warm days, she has to comb it for him. But she has severe rheumatoid arthritis, which often forces her to use a golf cart to get around her own backyard, so her health puts physical limits on what she can do.

"It's tough to be in charge all the time," she says.

Challenges of aging

Of course, she's not alone in facing these problems. With more people disabled by various conditions living longer, caregivers and agencies that help the clients and their families are all dealing with them.

"This is the first generation of elderly people with intellectual and developmental disabilities living independently in the community, and it's just providing a lot of challenges," says Deborah Davies, the chief executive officer of the Arc of Atlantic County.

"The aging process starts early" in many people with such disabilities - Down syndrome patients in particular are susceptible to early-onset Alzheimer's disease. "So we (face) the same aging issues we have with all people in people with developmental disabilities."

They include the question of how long people can safely live in their homes - including the community group homes the Arc started opening about 30 years ago, where some of those original residents still live today. Then there are the supervised-work programs that have been the focus of much of the advocacy of the Arc and other service groups.

"All this time, we mostly focused on more - more independence, more inclusion, improving ... capabilities," Davies says. "Now, as a system, we're having to face (questions such as), 'Do people ever get to retire?'"

Gibson says her brother loves the work he has been doing for about 15 years at the Career Opportunity Development Inc. in Egg Harbor City, and her family appreciates the fact that CODI gives him somewhere safe to go during the day and adds structure to his life. But she adds that Kenny also especially enjoys staying up late on Friday nights and watching TV - his all-time favorite shows are professional wrestling and "The Lawrence Welk Show" - because he doesn't have to take an Atlantic County bus to CODI on weekend mornings.

Still, because of the job's importance to his life, Gibson worries constantly about cuts to the county's transportation budget threatening her brother's ability to get to CODI.

"If they can't go out to work, we can't go out to work," she says, of the pressure families face. "And I'm a teacher, so I need to work."

Davies, at the Arc, adds that service agencies face all the mounting issues associated with increasing numbers of elderly disabled people at a time when governments at all levels are trying to cut spending.

A different world

But children growing up today with Down syndrome are living in a different world in many ways than older generations of people with the genetic condition did. Take 10-year-old Zach Ginet, from the Seaville section of Upper Township, who is in third grade at his local elementary school and is "included in the regular classroom for most of the day," his mother says.

Pam Ginet, 37, is the president of 21 Down, an organization of Down syndrome families in Atlantic and Cape May counties. The group is about 20 years old and most of its active members are the families of children with the condition - although Ginet does hear sometimes from older families, usually people who have taken custody of adult siblings with Down syndrome.

At this point, Pam Ginet's concerns sound similar to those of many other young parents.

"He just learned to ride a two-wheel bike," she says. "He reads, he does math, does his multiplication. He can't do everything other third-graders do, but he does write sentences. He doesn't always spell the words right, but he's doing very well."

Pam, a licensed pharmacist who is not working now, considers herself lucky that she is a relatively young mother of a Down syndrome child. Statistically, older mothers have much more of a chance of having babies with the condition. Because of her age, she expects to be able to care for her son for a long time if needed, but she is well aware that longer lives are another one of the huge changes going on in the lives of people with Down syndrome.

"It's hard to tell if he'll be able to live independently when he's older," she says. "I have two younger children, but I don't want to put too much of a burden on them."

Contact Martin DeAngelis:  609-272-7237  MDeangelis@pressofac.com

The National Down Syndrome Society has started a public-awareness campaign, called 'My Great Story,' which has a mission of 'showcasing and collecting inspirational stories told by people with Down syndrome as well as their family members, friends, colleagues, employers' and others. For more details on Down syndrome or on 'My Great Story,' visit ndss.org
@ 1970-2010 Press of Atlantic City Media Group

Richard Lapointe, Convicted in 1987 Murder, Gets Another Day in Court

Richard Lapointe, Convicted In 1987 Murder In Manchester, Gets Another Day In Court
by Rick Green

April 30, 2010

Richard Lapointe gently shook my hand, asked for my press I.D. and made a joke.

"Strong like bull," he said with a wink when I asked how he's feeling. "Smell like bull, too."

This was the benign jokester his friends told me about. But I had come to the maximum-security McDougall-Walker Correctional Institution in Suffield looking for the man convicted of raping and murdering his wife's 88-year-old grandmother on a Sunday evening in 1987.

What I found was a small shuffling man with short arms, a large head and oversize glasses. He wears a hearing aid in each ear. Lapointe, 64, has an intellectual disability called Dandy-Walker syndrome, a congenital brain malformation. Lapointe is eager to please and quick with the self-deprecating humor.

We quickly got down to the crime and the infamous three signed confessions he made to police during a long night of questioning two years after the murder.

"I didn't do it," Lapointe responded. "They were asking me questions and I was answering their questions. They made a trick question. Why would I confess to something I didn't do?"

On Monday, a Superior Court judge in Rockville — in response to a ruling in Lapointe's favor from the state Appellate Court — will take yet another look at this endlessly appealed saga of what is either a wrongful conviction or a very crafty mentally disabled murderer. The latest hearing on whether Lapointe deserves a new trial represents a dramatic, perhaps final, showdown in a case that has long attracted national attention.

Lapointe's lawyers say critical exculpatory evidence, including notes from an arson investigator that suggest the crime took much longer than police said, was suppressed during Lapointe's 1992 trial.

Lapointe, with an I.Q. of about 80, was polite and talkative, without bitterness. There was only sadness and jokes when we talked.

"I was a dishwasher. I did the lowest job in the building," he explained. "I loved my job. I loved my wife. I loved my son."

The long days in prison are spent doing simple word puzzles, playing cards and watching TV, though he told me he has no particular show he likes. He doesn't have a prison job.

On March 8, 1987, Bernice Martin was stabbed once in the stomach and 10 times in the back. She was sexually assaulted, bound up and dragged about her small apartment, which was set on fire after the attack. She died of a combination of strangulation and smoke inhalation. The fire destroyed nearly all DNA material from the crime scene.

Two years later, during a nine-hour interrogation, Lapointe gave three different and conflicting confessions to police. Lapointe, who doesn't read well, signed all of them. There is no audio or video recording of the interrogation.

"I loved her like my grandmother. I used to visit her with my wife. I'd run to the store with her," Lapointe said about Martin.

His wife has long since divorced him. He has no contact with his son. The Friends of Richard Lapointe, a band of now elderly supporters, visit him weekly.

"Without them, I'd be dead," he said. "Without seeing people from the outside, I wouldn't know what's going on. They all believe and know I didn't do anything."

The Friends, who number a few dozen, have never given up because they've never understood how a man with limited mental capacity and physical ability could suddenly and violently murder an old woman, all during a break from Sunday night TV watching. They have stood by Lapointe through a series of lawyers and 18 years of mostly bad news.

But a year ago, the state Appellate Court breathed new life into Lapointe's claim that he didn't strangle, stab and sexually assault an old woman. The court ruled that evidence viewed in "the light most favorable" to Lapointe supports his alibi, "albeit tenuously."

For years, Lapointe's supporters have excoriated Manchester police and the state's attorney's office for relying on the three confessions to convict Lapointe. For example, Lapointe confessed to strangling Martin with his hands. A medical examiner testified that she was asphyxiated by pressure from a blunt object.

There are other questions. Gloves found at the crime scene didn't belong to Lapointe. Although Lapointe confessed to stabbing Martin on the couch, forensic evidence suggested that the stabbing occurred in Martin's bedroom. He said Martin was wearing a "pink house coat." No clothing similar to that was found at the scene. DNA from a pubic hair found on Martin's clothing doesn't match Lapointe's.

I asked Lapointe about the police investigators and the long night of questioning that led to the three confessions that sunk him. Lapointe defended the police.

"What's wrong with that? They were doing their job," he said. "I'm not mad at them. It's their job."

But later he told me, "They just kept talking to me. I couldn't say I want to go home. I just kept talking to them. There was nothing wrong. I don't remember saying that I did it. Why should I say that? I'm not stupid. ..."

"I miss working. I miss talking to people. I miss my wife, my ex-wife. I miss my son," he said. "I have no regrets for being here. That's not my problem. That's the state's problem. They just said I did it. I've been trying to prove I didn't do it."

My hour visit ended and I departed with more questions about how this frail, disabled man got here. Lapointe, a man who has lost everything, was serene.

"Why should I be angry?" he asked before I left. "I've never been angry in my life."

Copyright © 2010, The Hartford Courant

Promise Seen in Drug for Autism, Fragile X Syndrome

The New York Times - April 29, 2010

Promise Seen in Drug for Retardation Syndrome

An experimental drug succeeded in a small clinical trial in bringing about what the researchers called substantial improvements in the behaviors associated with retardation and autism in people with fragile X syndrome, the most common inherited cause of these mental disabilities.

The surprising results, disclosed in an interview this week by Novartis, the Swiss pharmaceutical giant that makes the drug, grew out of three decades of painstaking genetic research, leaps in the understanding of how the brain works, the advocacy of families who refused to give up, and a chance meeting between two scientists who mistakenly showed up at the same conference.

“Just three years ago, I would have said that mental retardation is a disability needing rehab, not a disorder needing medication,” said Dr. Thomas R. Insel, director of the National Institute of Mental Health, who was told of the Novartis trial results. “Any positive results from clinical trials will be amazingly hopeful.”

Dr. Mark C. Fishman, president of the Novartis Institutes for BioMedical Research, cautioned against too much optimism. The trial involved only a few dozen patients, only some of whom benefited from treatment. The drug is likely to be years away from being commercially available and could fail in further clinical trials, he said.

“We have been reluctant to make this public because we still need to do more experiments, do them correctly and in a bigger way,” Dr. Fishman said. “But our group feels pretty good about the data.”

If authenticated in further, larger trials, the results could also become a landmark in the field of autism research, since scientists speculated that the drug may help some patients with autism not caused by fragile X, perhaps becoming the first medicine to address autism’s core symptoms.

One child in five thousand is born with fragile X syndrome, with mental effects ranging from mild learning disabilities to retardation so profound that sufferers do not speak, and physical effects that include elongated faces, prominent jaws, big ears, and enlarged testes. It mostly affects boys and earned its name because, under a microscope, one arm of the X chromosome seems nearly broken, with part hanging by a thread.

The gene for fragile X was discovered in 1991. Work since then has found that fragile X patients seem to experience an overload of unchecked synaptic noise — synapses being the junctions between brain neurons. The Novartis drug and others like it are intended to lower the volume of this noise so memory formation and high-level thinking can take place, allowing children to develop normally.

The Novartis trial, which began in 2008 in Europe with data analysis completed this year, was too brief to observe effects on basic intelligence. Instead, researchers measured a range of aberrant behaviors like hyperactivity, repetitive motions, social withdrawal and inappropriate speech. They gave one set of patients the drug and another a placebo, and after a few weeks switched treatments, with both doctors and patients unaware of which pill was which.

The results of the trial were something of a jumble until Novartis scientists noticed that patients who had a particular, undisclosed biological trait improved far more than others. “The bottom line is that we showed clear improvements in behavior,” Dr. Fishman said.

Told of the results, two parents of a fragile X patient were euphoric.

“This is what we have been working for and hoping for since our son was diagnosed with fragile X 17 years ago,” said Katie Clapp, president and co-founder of the Fraxa Research Foundation, a nonprofit organization dedicated to financing fragile X research. “This may be the key to solving the mystery of autism and other developmental disorders.”

Geraldine Dawson, chief science officer at Autism Speaks, the world’s largest autism advocacy organization, said that a growing body of research suggests that the many genetic causes of autism all seem to affect synapses, suggesting that a treatment for one form of the disease might help others.

“The exciting thing about these results is that it is our hope that these same medications may have similar positive benefits for people with autism who don’t have fragile X syndrome,” Dr. Dawson said.

Between 10 percent and 15 percent of autism cases result from fragile X syndrome or some other known genetic defect. While fragile X is the most common inherited cause of mental retardation, Down syndrome — which also causes retardation — is more common but is not inherited.

The Novartis trial results were not published or peer reviewed, and for commercial reasons Dr. Fishman refused to divulge many details. Dr. Luca Santarelli, head of neuroscience at Roche, confirmed that Roche is in the midst of testing a similar medicine in fragile X patients at four sites in the United States.

“So far we like what we see,” Dr. Santarelli said in his only characterization of their study.

One reason for the euphoria surrounding the Novartis trial is that it was seen as an especially difficult test of the drug’s effects. For ethical reasons, Novartis tested the drug only in adults. But the company and outside researchers believe that such compounds may prove most effective in young children, whose brains are far more likely to respond rapidly when barriers to learning are removed.

“This is perhaps the most promising therapeutic discovery ever for a gene-based behavioral disease,” said Dr. Edward M. Scolnick, former research chief at Merck and now director of the Stanley Center for Psychiatric Research at the Broad Institute at Harvard and the Massachusetts Institute of Technology.

Dr. Scolnick has not seen the results of the Novartis trial, but was told of them and concluded that if the drugs work in fragile X, “there’s nothing to say that they won’t work in some cases of broader autism-spectrum disorders.”

An Unlikely Beginning

The roots for the Novartis results began in 1982 when Stephen T. Warren, then a graduate student in genetics at Michigan State University, was looking for a job and something to research. A friend told him about fragile X and, with the same reflection he might use to pick a novel for a long flight, he decided that he wanted to find the gene that caused it.

“I had no idea how hard this would be,” Dr. Warren said. Nine years later, Dr. Warren, then at Emory University, was part of an international team that won a fierce competition by isolating the gene. The discovery was front-page news around the world, and experts predicted that widespread fetal testing and therapies were in the offing.

The predictions were premature because, like most of genetic research, discovering how the flawed gene caused disease was far harder than anticipated and required multiple leaps in neurology and biology. And even with those, much remains mysterious.

Fragile X is caused by a genetic stutter in which a portion of the gene gets repeated like a scratched album. With each subsequent generation, the number of repeats tends to rise. So if a mother has 10 repeats, her child might have 11 or 12. For reasons that are not well understood, however, this process of repeat amplification can suddenly go haywire. So mothers who have 55 or more repeats tend to have children with hundreds.

In anyone with 200 or more repeats, the body shuts off the gene. Since genes are used to make proteins, this genetic silencing means the encoded protein is never made. The absence of this protein in cells causes the wide-ranging effects of fragile X syndrome. Those with 55 to 200 repeats are considered carriers, and recent research shows they can have severe neurological declines late in life that mimic Alzheimer’s and Parkinson’s.

Many geneticists would have moved on to other research topics after finding a disorder’s underlying gene. But Dr. Warren met affected children and their parents. Instead of family pictures, Dr. Warren’s desk displays a framed photo of a fragile X chromosome.

“I could not imagine telling someone like Katie Clapp that we were not going to pursue this research anymore,” he said.

So he kept on. Years of work by him and others found that the protein missing in those with fragile X normally seems to act as a sort of traffic cop at brain synapses, helping to stop or slow brain signaling at crucial intervals. It does this by sopping up the genetic instructions needed to produce proteins that encourage brain signaling. Regulating this flow of electronic pulses across the brain is crucial for the brain’s ability to learn and mature.

Dr. Warren was puzzling over how to recreate that synaptic traffic cop when, because of a scheduling conflict, he showed up in 2001 at the wrong scientific conference and happened to sit next to Mark F. Bear, a neuroscience professor at M.I.T. who had just given a presentation about compounds that seemed to work in synapses to speed the creation of proteins — including the one missing in fragile X patients.

The two got to talking and decided to collaborate. They found that if Dr. Bear reverse-engineered his compounds, they seemed to slow brain transmissions. Instead of a traffic cop, the brain would get speed bumps. Not ideal, but perhaps adequate in lowering the synaptic noise enough to encourage learning and the moderation of the kind of synaptic traffic jams that in fragile X children can lead to seizures.

Sure enough, mice, fish and fruit flies that through genetic engineering were made to have fragile X seemed to become normal when given Dr. Bear’s compound. The Novartis compound is a member of the same drug family.

“We have been promising for a long time that unlocking the molecular basis for hereditary diseases would lead to dramatic therapeutic advances, and that promise is finally coming true,” said Dr. Francis S. Collins, director of the National Institutes of Health, in discussing the science leading up to the trial. “But it has not been easy.”

A Search for Treatment

A hundred years ago, Katie Clapp would have died giving birth to Andy, her child with fragile X.
“Andy’s head was too big to get out without a C-section, he would have killed me, and that would have taken care of the fragile X gene,” she said.

But Ms. Clapp and Andy did survive. And despite going to some of the best hospitals in the country, four years would pass before Andy’s condition was properly diagnosed.

When a doctor finally thought to do a fragile X test, Ms. Clapp and her husband, Dr. Michael Tranfaglia — both Harvard graduates with post-graduate degrees — researched the disease and came to two conclusions: fragile X was potentially treatable; and only about five researchers in the world were working toward a cure.

“And I thought, what if all five walk across the street at the same time and get hit by a Mack truck?” Ms. Clapp said. “That is not going to get us there.”

So the two started the Fraxa Research Foundation. Remarkably, their efforts seem to be paying off and may finally offer hope not only to those who with fragile X but to carriers like Andy’s sister, Laura.

“I’ve always known my kids have a chance of having it,” Laura, 18, said in a recent visit to the family’s house. “But I’m not going to have kids for at least 10 years anyway, and they’ll have a cure for by then.”

She paused, looked at her mother and said: “You’ve got 10 years.”

People with Disabilities Get Job Training on the Hill

Disabled get job training on Hill
By: Erika Lovley - April 28, 2010 05:01 AM EDT

Ryan Gutkowski, an intellectually disabled college student, seldom spoke when he first came to Capitol Hill. Now, he engages with staffers frequently — at times from behind the desk of his boss, Mississippi Republican Rep. Gregg Harper.

Gutkowski calls it “my desk.”

Usually painfully shy, Gutkowski, whose disability is caused by a chromosomal genetic abnormality, cracks an easy smile anytime Harper addresses him. Staffers say the two seemed to have an instant connection.

“Tell them where you’ve been sitting when I’m not here — are you sitting at my desk?” Harper prods Gutkowski.

“Comfortable chair!” Gutkowski responds.

“Well, I love that chair, but I don’t mind you using it when I’m not here,” Harper says.

During the past month, Gutkowski and two other students with intellectual disabilities have worked in the offices of Harper, Reps. Bill Cassidy, John Fleming, Cynthia Lummis and Cathy McMorris Rodgers, as well as the Republican office of the House Administration Committee. The students do everything from answering constituent mail and shredding paper to learning how to give tours of the Capitol.

“I’m excited about having someone in the office who brings the real-world perspective of battling a disability and being able to have a lot to contribute,” said McMorris Rodgers, whose young son, Cole, has Down syndrome.

The internships are part of a pilot program created by Harper, House Administration Committee Republicans and Mason LIFE, a post-secondary program at George Mason University for adults with intellectual disabilities.

The program doesn’t guarantee the interns jobs on the Hill, but it does give them office experience in a high-profile workplace that is likely to boost their résumés when they begin searching for jobs.

Harper’s 20-year-old son, Livingston, has a genetic condition called Fragile X syndrome, which is the most common cause of inherited intellectual disabilities. Since graduating from high school, Livingston has worked several days a week in a Mississippi restaurant and takes a few community college courses but still dreams of attending Mississippi State University in Harper’s district, just like his sister.

The congressman is helping the university develop its own program for disabled students. In the process, he connected with Mason LIFE Director Heidi Graff and asked whether there was a way Congress could aid her students. 

“After dealing with these issues for 20-plus years, that’s kind of where our heart is,” Harper told POLITICO. “A lot of times, when you get out of high school and you’re dealing with intellectual disabilities, you fall off the educational face of the Earth. Sometimes you’re looking to give hope to some of these families who want their child to continue on.”

Barely six weeks old, the Hill program is rapidly generating interest among members, largely because the interns advertise themselves. Already, Senate and legislative branch offices are expressing interest.

“It’s all very exciting,” Graff said. “There’s no doubt that when it comes to intellectual disabilities, Congress is not a one-party unit. We’re seeing support from across the aisle.”

Kia Hill, a 22-year-old with intellectual disabilities, used to think her only real talent was painting her nails.

But after more than a month of an internship and mentoring by a group of House Republicans and their staffers, she talks readily about her goals after graduation.

“There are so many things I want to do,” she said, standing in the Capitol Rotunda, after displaying a handful of intricately designed glitter-covered fingernails.

“I would love to work to help homeless people in here. I want to change people’s lives, that’s the No. 1 thing I want to do. I think I could possibly do that by getting a job here.”

Vivian Alonso, a short, smiling 25-year-old with Down syndrome, has trouble speaking, remembering and telling the difference between long and short lapses of time. Months often seem like days, and last week can easily become “yesterday.”

But she proudly shows off her desk in the GOP House Administration Committee office, and she’s using the internship as a way to work on her reading skills.

The program is designed to serve a dual purpose. Each intern is accompanied to the Hill by a guide, known as a job coach. Graduate students from George Mason’s special education program serve as the coaches, getting hands-on experience in their field.

Megan Kime, one of the coaches, says she’s been amazed by the interns’ progress.

All three show signs of confidence as they learn office skills and develop relationships with other employees.

Along the way, the interns learn life skills: how to commute on Metro; how to buy lunch in the House cafeteria; how to interview for a job. Hill has begun setting her alarm clock to be sure she’s up in time for work.

According to Kime, Alonso is happy with her work at the Capitol; Hill handles herself well, “even though she’s never been in a work environment before”; and Gutkowski “is making fast progress at becoming more vocal with his co-workers.”

“The skills they are learning are top-notch,” Kime said.

The pilot program doesn’t close until the end of next week, but Harper already has big dreams for the next round. He aims to expand the program throughout Congress and hopes to make it similar to the congressional page program, in which students live in nearby housing and work on the Hill.

It’s the kind of opportunity Harper says he would like for his own son to have.

“We’re trying to get them to the point where they can get a job. Not a menial job, but a real job that they actually enjoy and can contribute to the functions of an office,” Harper said. “I think it’s a great bridge for a lot of these kids, and I’m just thrilled to be a part of it.”

© 2010 Capitol News Company, LLC

Health Reform for Americans with Disabilities

Americans with disabilities will gain greater control over their own health care.

Greater Choices:

  • Expands the Medicaid program
  • New Options for Long-Term Supports and Services
  • Eliminates Insurance Company Discrimination
  • More Affordable Choices and Competition
  • One-Stop Shopping
  • Insurance Security
  • Makes Health Care Accessible to Everyone

Lowering Costs by Rewarding Quality and Cutting Waste:

  • Insurance Industry Reforms that Save Money

Assuring Accessible, Quality, Affordable Health Care for People with Disabilities:

  • Preventive Care for Better Health
  • Address Health Disparities
  • Improve Care for Chronic Disease

To learn more about each of these topics view the document released from the White House. 

18,000 Pennsylvanians Wait for Community-Based Services

18,000 Pennsylvanians wait for community-based services
By KARI ANDREN, The Patriot-News
April 23, 2010, 12:00AM

Christa Best, 21, suffers from Fetal Alcohol Syndrome. Best graduated from Susquehanna Twp. High School last year, but even before that, her adoptive mom, Carol Carp, put the wheels in motion to get her into a small group home.Christa Best has a big heart, a love of animals and an ear for country music. 

The 21-year-old Susquehanna Twp. High School graduate is a directional savant — she can tell you exactly how to get back to anywhere she’s been — and is amazingly resilient, her adoptive mother, Carol Carp, says. 

Christa came to Carp as a foster child when she was 7, and although she was only supposed to stay six weeks, the family adopted her. 

Christa has intellectual disabilities and has been diagnosed with severe reactive attachment disorder, a psychiatric illness often found in children who have had severe problems or disruptions in their early relationships. She will likely never hold a job or live on her own, Carp said. 

Carp, 54, said she worries that one day she might be unable to care for Best. Carp has been trying for several years to get Best into a small group home where caregivers could provide the structure and routine she needs. 

“As I get older, it’s harder for me to care for her — she’s strong and bigger than I am,” Carp said. “Other mothers have the same issues. I worry about my health. I work full time and I have other children at home plus an elderly father.” 

Best is one of nearly 18,000 people statewide who are waiting for community-based mental retardation services. Of those, 3,160 are considered to have emergency needs, meaning they could have to move to a state institution if they cannot gain access to community-based services. 

Gov. Ed Rendell proposed a small increase to the community mental retardation waiver program, which would help the state Department of Public Welfare add 150 people, including 100 special-education high school graduates, to the program. 

The program provides services such as home or vehicle-accessibility adaptations, therapy, nursing, educational support and transportation to about 24,500 people, according to the department. 

Lawmakers and advocates for those with disabilities expressed disappointment at a recent budget hearing that the increase was not large enough to accommodate even more people. The mental retardation waiver program is primarily federally funded but received about $623 million in state money this year. 

While providing for a small increase in the waiver program, the governor’s budget proposal also includes a $6 million cut to those who provide the mental retardation services. Department Secretary Harriet Dichter defended the 1 percent cut, saying it’s the first reduction in payments the Rendell administration has posed.

But in March, Sen. Mary Jo White, R-Venango County, said, “I think this is a train wreck waiting to happen.” 

Dicther said the department chose to give the waiver program a small increase rather than prevent the 1 percent cut to service providers to allow a few more people in “a highly vulnerable” group to gain access to community-based services. 

Far more than 150 people need services, and that worries Stephen Suroviec, the executive director of the Arc of Pennsylvania, an advocacy organization for individuals with intellectual and developmental disabilities. He said that even a small funding cut to providers will have a big impact on what providers can offer. 

Rendell “is expecting [providers] to serve everybody the same, but with this much less money,” Suroviec said. “The problem is community providers in this system are basically 100 percent funded with public dollars.” 

They can’t shift costs around to make ends meet the way a business might be able to do, he said. 

Suroviec said about 1,200 people are in the state’s five Centers for the Mentally Retarded and about 49,000 get community-based services. 

“It’s so disproportionate, he said. “The primary system is the community system, and it’s being starved.” 

It costs about $240,000 per person annually to house and serve each person in one of the state’s institutions, said Ilene Shane, head of the Disability Rights Network of Pennsylvania. 

“That’s not a direction you really want to see the state go,” Shane said. “It’s not only inhumane, but very ineffective.” 

Advocates favor keeping individuals with disabilities in their communities with support services, including placements in small group homes, rather than putting them into state institutions. 

The Pennsylvania Waiting List Campaign, which is funded by the Disability Rights Network, tracks the number of people waiting for a variety of community-based services. The campaign estimates that in addition to the 3,160 considered to have an emergency need, another 8,700 people have a “critical need,” meaning they will need services within two years, said Sheila Stasko, the statewide coordinator for the campaign. 

“The people in the critical category are just a heartbeat away from emergency,” Stasko said. 

Disability-rights advocates and lawmakers worry that only 100 graduating high school seniors, compared to 700 students in previous years, will be able to receive support after graduation this year under Rendell’s proposed budget, Shane said. 

Shane said parents depend on their children and young adults having a place to go during the day, or supports to help them live on their own so they as parents can continue to work. 

“When students turn 21, they age out of every program that supports them,” Shane said. “Normally, that’s where the community services would come in.” 

Without funding for supports for recent graduates, especially those who cannot be left alone, parents may be forced to quit their jobs to care for their son or daughter, and the student “will regress terribly,” she said.

Carp said Christa Best receives employment-skills training, which gives her something for her to do a few hours each day, even if Best probably won’t be fully independent. Carp feels that a group home placement would be the best thing for Best in the long term. 

“A group home is good and would provide what she needed,” Carp said. “She’s not getting the attention she needs [here], and she needs a lot of attention.”

Kentucky Governor Signs Autism Coverage Bill

Kentucky Post
Jessica Noll

FRANKFORT, Ky. – Gov. Steve Beshear Wednesday signed legislation that will increase the amount of coverage health insurers must provide for autism spectrum disorders to insured individuals in large and small group plans, as well as the state employee health benefit plan.

HB 159, sponsored by Rep. Jeff Greer, of Meade, provides coverage for the diagnosis and treatment of autism spectrum disorders for individuals between the ages of 1 and 21, including coverage in the annual amount of $50,000 for individuals who are 1-6 years of age, and coverage in the annual amount of $12,000 for individuals who are between the ages of 7 and 21.

The new law also requires that individual and small group market health benefit plans provide coverage for autism spectrum disorders in the amount of $1,000 per month for pharmacy care, psychiatric care, psychological care, therapeutic care, applied behavior analysis and rehabilitative care for the treatment of autism spectrum disorders.

"Supporting the health care needs of Kentucky’s children has been one of my top priorities as Governor and autism is a disorder that is increasingly impacting many Kentucky families," said Beshear.

"The Autism Society of America estimates that autism and its associated behaviors have been estimated to occur in as many as one in 500 individuals. In signing this much needed legislation, I am happy to say that this administration and this General Assembly are helping these families cope with this developmental disability by removing some of the treatment cost barriers that have kept these young people from getting the care they need."

"I am so proud to have sponsored this landmark legislation that will finally allow affordable health care for children and adults with autism," Greer said. "For too long, families have struggled financially trying to obtain the medical therapies autistic patients need. House Bill 159 was the product of consensus, bipartisanship and common sense and I am glad that it is now law in Kentucky."

The legislation also creates the Kentucky Applied Behavior Analysis Licensure Board for a practitioner of applied behavior analysis, a therapy proven effective in treating autism spectrum disorders.

The new law goes into effect Jan. 1, 2011.

Walgreens Recognized as Private-Sector Employer of the Year for People with Disabilities

April 15, 2010, 8:48 a.m. EDT 

Walgreens Recognized as Private-Sector Employer of the Year for People with Disabilities

DEERFIELD, Ill., Apr 15, 2010 (BUSINESS WIRE) -- Walgreens has received recognition as "Private-Sector Employer of the Year" by CAREERS & the disABLED magazine for its commitment to recruiting, hiring and promoting people with disabilities. The company was also selected as one of the top five employers readers would most like to work for or believe is progressive in its hiring practices. Walgreens will be honored by the magazine this May in Boston.

"At every level, we do all we can to emphasize people's abilities and strengths," said Walgreens senior vice president of supply chain and logistics Randy Lewis, who leads of the company's disability employment initiative at its distribution centers (DCs). "We've been able to successfully make a meaningful impact on the lives of all who touch this initiative from team members and parents to managers and executives. We've done this while meeting our business objectives and doing what's right for the company."

In 2007, Walgreens formalized its plan to make bigger strides in the employment of people with disabilities with the opening of the first of its newest generation of DCs in Anderson, S.C. Today, people with disabilities make up 43 percent of the facility's workforce. Employees with disabilities have been trained to work side-by-side with other team members -- with the same productivity goals, earning the same pay. Disabilities range from autism and mental retardation to hearing, vision and other physical impairments. Due to the successes in Anderson, Lewis created a company goal to fill 10 percent of its production jobs at all DCs with people who have disabilities by the end of 2010. Walgreens also mentors other companies to share valuable insights and help them shape their own disability inclusion efforts.

Last month, Walgreens launched a pilot program aimed at hiring people with disabilities for 10 percent of service clerk openings at its Dallas/Fort Worth area stores. Training for the pilot, developed in conjunction with the Texas Department of Assistive and Rehabilitative Services (DARS), will prepare candidates for Walgreens staff positions, other jobs in retail or customer service positions that require similar skills. The company also plans to work with DARS to help candidates with job placement.

"This is the 18th year in which CAREERS & the disABLED magazine has honored employers who have made a difference in the lives of people with disabilities," said publisher John Miller. "We are pleased to name Walgreens for its commitment to recruit, hire and promote people with disabilities."

Walgreens (www.walgreens.com) is the nation's largest drugstore chain with fiscal 2009 sales of $63 billion. The company operates nearly 7,500 drugstores in all 50 states, the District of Columbia and Puerto Rico. Walgreens provides the most convenient access to consumer goods and services and cost-effective pharmacy, health and wellness services in America through its retail drugstores and Walgreens Health and Wellness division. The division includes Take Care Health Systems, the largest and most comprehensive manager of worksite health and wellness centers and in-store convenient care clinics, with more than 700 locations throughout the country.

Living with Autism: A Father's Story

Living with autism: A father's story, Fortune (blog)
April 14, 2010, 11:51 am

April is National Autism Awareness Month–the time to talk about a disability that affects one in every 110 births in the U.S. and almost 1 in 70 boys. The lifetime cost of caring for a child with autism: $3.5 to $5 million, according to The Autism Society. But all the money in the world doesn't make dealing with autism easy. Here is one man's story about how his son's autism changed his life. In 1992, Harry Slatkin left Wall Street to start a business–home fragrances and candles, of all things. He sold the business to Limited Brands (LTD) in 2005 and since then has used his money and his power for the good of the cause.

Guest Post by Harry Slatkin, President of Slatkin & Co., and President of Home Design, Limited Brands

I have ten-year-old twins, David and Alexandra. When my son was 18 months old, he was diagnosed with autism. It rocked my world.

I’d always felt as if I had control over almost every aspect of my life, and especially my business life. But after spending hours reading about autism on the Internet that first day, I was silent and I was scared.

My wife, Laura, had been traveling on business in Texas. I had to break the news to her that night when she arrived home. We cried ourselves to sleep in each others' arms, knowing that our lives would never be the same and that our son's life would be a battle.

The next day, Laura decided to get every book, paper, and anything else she could get her hands on that had been written about autism. We learned the different degrees of autism spectrum disorders from Asperger to autism and all that lies in between. We read things that I wish we hadn't. Too much information can sometimes be a hazard–like knowing that some children smear and/or eat their feces or have wild tantrums. It went on and on.

I would wait to see if those moments would happen.

And over time, of course, they did.

Although nine years ago, autism wasn’t in the press very often, Time had published the first major cover story, and it was about the Yale Child Study Center specializing in autism. The first doctor we reached out to was Dr. Fred Volkmar at Yale Center, and when we called, we were told it would be a two-year wait. We have a friend on the board of Yale, so we got in to see Dr. Volkmar the next week.

Hearing about that two-year wait was such an “aha” moment for us, though, that we needed to do something. So with the same fervor that helped us start our business, we created a foundation to combat autism. We started the New York Center for Autism (NYCA), the first charter school for autism in New York State. Then we funded a program at Hunter College to train public-school teachers about autism. At the time, all “special needs” children were being lumped together in the educational system, and we knew that with autism, it's crucial to begin working with the child as early as possible.

Both Mayor Bloomberg and School Chancellor Joel Klein were amazing. They said yes to us from the start.

Today, my wife and I sit on numerous boards, including Autism Speaks (autismspeaks.org). We recently signed an agreement with New York-Presbyterian Hospital, Columbia University and Weill Cornell Medical College to build a major medical facility on 214 acres in Westchester that will be dedicated to autism research and the study of the brain.

We travel the world and visit autism sites, speaking with families in need of help and answers. My company, Limited Brands, has been extraordinary. Three years ago, the company, along with White Castle, co-sponsored the first Autism Speaks walk in Columbus, Ohio. We got the President of Ohio State, Dr. Gordon Gee, to commit to creating a major autism facility on campus. And at last year’s walk, we got the Governor of Ohio to commit, live on NBC at the finish line, to fight for insurance reimbursement. So many companies have joined the fight–like Home Depot (HD) and Toys “R” Us, which has started a training program for adults with autism to work in its warehouses. These employees have higher productivity than other workers.

My son no longer lives with us, as it became just too difficult for him. He is on the severe side of the autism spectrum. The school we chose for him, The New England Center, has made David happy. He's learning and he comes home often. We love him deeply.

Autism has forced me to learn a great deal about the results that can come from total commitment and hard work. Nine years ago, I could never have imagined that one day, my wife and I would be having medical discussions at the level we are. On any given night, you might come to our home for dinner and sit next to Tom Insel, the Director of the National Institute of Mental Health, or Dr. Jim Watson, who discovered of the structure of DNA, or Dr. Herb Pardes, CEO of New York-Presbyterian Hospital.

So, even as my family’s world has been profoundly affected by autism and it has been extremely difficult, a whole new world has opened up to us. I think back to when Laura and I were starting Slatkin & Co. and we had to “sneak” candles into Kensington Palace (because they were American-made) for the late Princess Diana, who was a big fan of our line. “If I can make a difference in one child’s life," Diana once told me, "then all my efforts will be worth it.” I still take her words to heart. Someday we will find a cure for autism. Until then, we'll make each day the best it can be, and help each child that we can. One life at a time.

2010 Disability Policy Seminar Highlights

April 12, 2010

Highlights from the 2010 Disability Policy Seminar, April 12-14
Hyatt Regency Washington on Capitol Hill

Working Together for a Future that Works – Presented by The Arc, UCP, AAIDD, AUCD, NACDD, SABE

Jeffrey Crowley at the 2010 Disability Policy Seminar

Jeffrey Crowley, Director, Office of National AIDS Policy and Senior Advisor on Disability Policy in the White House, spoke to over 500 disability rights advocates gathered in Washington for the 34th Disability Policy Seminar.  Crowley said health care reform is critical to economic recovery along with other initiatives of the Obama administration.  Calling health care reform a major advancement for disability policy, he pointed to several key components for the disabilities community:

• Extend Medicaid to all people up to the poverty level to provide more lower and middle income families health care coverage
• Long-term supports and services and the CLASS Act
• Community First Option
• Money Follows the Person

Other important health care reform victories are banning preexisting condition for children as reasons not to ensure and better regulating the private insurance system. 

Kicking off an entire day focused on health care reform, Mr. Crowley said that the Department of Health and Human Services would take a lead role along with the Department of Treasury and the Department of Labor.

Health Care Reform/Medicaid:  What’s in the New Law?

This panel featured moderator Millie Ryan, Executive Director, Alaska Governor’s Council on Disabilities and Special Education and Chair, Public Policy Committee, NACDD.  Speakers Marty Ford, Director, Legal Advocacy, Disability Policy Collaboration and Liz Savage, Director of Health and Housing Policy, Disability Policy Collaboration briefed attendees on all of the major disability related components of the Health Care Reform Act:  preexisting conditions, lifetime and annual caps, long term services and supports and the CLASS Act.

Plenary Session – Health Care Reform – The Law from a Disability Perspective

This panel was moderated by Mark Lezotte, Co-Chair, Legislative Agenda Steering Committee, Disability Policy Collaboration.  Speakers:   Peter Thomas, Partner, Powers, Pyles, Sutter & Verville and Co-Chair, Health Task Force, Consortium for Citizens with Disabilities; Connie Garner, Director, Disability and Special Populations, Committee on Health, Education, Labor and Pensions and Howard Bedlin, Vice President, Public Policy and Advocacy, National Council on Aging.

These speakers provided the rationale for why our nation needs health care reform with an emphasis on the provisions dealing with disabilities.

Plenary Session – Action Planning for Health Care Reform Implementation

This forum moderated by Paul Marchand, Staff Director, Disability Policy Collaboration, engaged participants in an interactive discussion on health care reform. Participants were asked to identify priority issues that all attendees might consider when they return home and do their part in implementing health care reform.

Narrators with Autism & Asperger's Syndrome Provide Unexpected Perspectives

Word Play: Healing voices
Narrators with autism and Asperger's Syndrome provide unexpected perspectives on the worlds of childhood and maturity.
By Sonja Bolle, latimes.com

April 11, 2010

Is there anyone among us who does not know, or know of, a child with an autism spectrum disorder? Whether diagnostic criteria are allowing us to identify more individuals, or something in the environment is causing more autism, or our social habits and educational guidelines no longer encourage families to isolate kids with developmental differences, there are more children with autism and Asperger's Syndrome in our classrooms, on our sports teams and in our lives.

Since one of the symptoms of an autism spectrum disorder is social difficulty, there is an awkwardness fitting these children into groups. Other children find them hard to make contact with, because they often do not pick up on the social cues -- facial expressions, verbal play -- that kids learn to make friends. One goal of integrating kids with these disorders is to help them develop social skills. Another is to give mainstream kids a sense of the variety of human experience. Wouldn't it be desirable to help everyone find a way to make contact?

Here is where fiction can help: by showing a reader the world from another point of view. An extremely popular pair of children's books -- " Al Capone Does My Shirts" and "Al Capone Shines My Shoes" -- have a secondary character with a developmental disorder that goes unnamed because, as author Gennifer Choldenko explains in an author's note, autism was not identified at the time of the story's setting in the 1930s. The main character's sister begins as a burdensome charge whose odd habits embarrass her brother in front of his new friends, but she ends up being accepted in the society of children and affecting the course of the story materially.

Other novels are telling their stories more daringly from the point of view of a character "on the spectrum." In Kathryn Erskine's "Mockingbird" (Philomel/Penguin: $15.99, ages 10 and up), 10-year-old Caitlin has lost her brother, the one person with whom she felt accepted and at ease. Her discovery of the concept of "closure" helps her come to terms with her brother's death. Caitlin's often clumsy attempts to find a path to closure end up lighting the way also for her father, who in his grief is even more isolated than she is.

Although "Mockingbird" may sound like a distressing read, the emotional distance created by Caitlin's Asperger's qualities lowers the temperature of the drama and makes the experience, like so much in Caitlin's life, a struggle to make sense of things that are worth puzzling out.

Nora Raleigh Baskin's "Anything But Typical" (Simon & Schuster: $6.99 paper, ages 9-12) underlines the delicate matter of disorder labels by making fun of the "alphabet soup" used to cover a wide range of individuals. Writing about himself briefly in the third person (before trying to maintain a first-person point of view for the rest of the book), sixth-grader Jason Blake says he was "diagnosed with ASD, autistic spectrum disorder. But his mother will never use that term. She prefers three different letters: NLD, nonverbal learning disorder. Or these letters: PDD-NOS, pervasive developmental disorder-non-specific. When letters are put together, they can mean so much, and they can mean nothing at all."

The labels themselves are distancing. When Caitlin's father observes that she had a TRM at school, she substitutes "That Reminds Me" for the far more disturbing words he has in mind, "Tantrum Rage Meltdown." Caitlin, with Asperger's, is offended by being associated with an autistic boy in her school, until her counselor points out that she seems to consider herself above him in the same way that other students consider themselves above her.

"Anything But Typical's" Jason refers to the other kids in his school as "neurotypicals." He expresses himself in fiction and through the intermediary of an online story-writing community finds himself drawn to someone who might conceivably be considered a girlfriend. This book pushes past the difficulty of making friends to the infinitely trickier area of making romantic connections.

If we are reading these novels as primers on getting along, the first lesson is that just because kids are hard to relate to, it doesn't necessarily mean they don't want to relate. In fact, these characters expend enormous effort to match their behavior to others' just to fit in. They study the Facial Expressions Chart to learn the clues to reading emotion on others' faces. When Jason describes trying to match the cartoon emotions on the chart with the infinitely more subtle expressions of real life, it seems amazing that most people can interpret faces intuitively: "Why are they wrinkling their forehead or lifting their cheeks like that? What does that mean?"

Ted, narrator of Siobhan Dowd's "The London Eye Mystery" (Dell/Yearling: $7.50 paper, ages 9-12), tries to follow his teacher's advice: "If I learn how to be like other people, even just on the outside, not inside, then I'll make more friends."

The most comfortable relationship these characters have is often with their siblings who, by force of intimacy and affection, have learned to bridge the gap. Caitlin says of her brother that he "tells me what to say and what clothes to wear and how not to be weird so kids won't laugh at me. And he plays basketball with me." Although she may not read emotion well, she observes closely: "He always gives me a chance to win by tripping or moving slowly or going the wrong way when I do a fake. I can tell when he's doing something on purpose by looking at his mouth. His lips move a certain way when he's thinking. When he's being sneaky his lips move a different way. But when he's being sneaky he's doing it to be nice to me."

The books make arguments for inclusion or at least tolerance by acknowledging the tendency of kids to gang up on those who are different. The painful scenes of schoolyard conflict give readers ample opportunity to understand why recess could be the worst part of the day for some kids.

In "The London Eye Mystery," Ted finds a surprising confidant in his newfound cousin Salim. "I don't like being different," Ted tells him. "I don't like being in my brain. Sometimes it's like a big empty space where I'm all on my own. And there's nothing else, just me." Salim, a moody teenager, answers: "I know that place. I'm in there, too. It gets real lonely in there, doesn't it?" When Salim disappears while riding the enormous Ferris wheel, the London Eye, Ted and his sister track him down by doing a kind of detective work that Ted's logical brain is particularly suited for.

The mystery genre works well for these characters. Perhaps the first popular novel told from the point of view of an autistic character was Mark Haddon's multi-prize-winner, "The Curious Incident of the Dog in the Night-Time," in which an extremely intelligent and high-functioning young autistic man solves a murder. (OK, the murder is of a dog, but the book uses the detective story form, and the title refers to a Sherlock Holmes story.) The hero of "Marcelo in the Real World" by Francisco X. Stork (Arthur A. Levine Books/Scholastic: $17.99, ages 12 and up) is a young man entering his last year at his special school whose father challenges him to test his hard-won social skills in a real-world summer job. A mystery presents itself, which Marcelo, with his special powers of observation, is uniquely qualified to solve.

Detectives are allowed to be eccentric; indeed, it's often part of their success, both forensic and literary. (Think of all the beyond-quirky detectives on television shows, from "Columbo" to "Monk.") Some have suggested that Sherlock Holmes himself exhibits certain Asperger's qualities: a single-minded brilliance leaning heavily on an encyclopedic memory, a social abruptness and insensitivity that might be masked with a codified Victorian gentlemanliness. When Holmes needs to charm, he might simply be applying the kind of social rules that "on the spectrum" characters have drummed into them.

All these novels are worth reading just because they have fascinating characters. Readers might like to enter their minds at least in fiction, and who knows? Perhaps they'd be inspired to take a new look at some of their classmates. Surely some kids would be intrigued by Ted in "The London Eye Mystery," who can say of himself: "It's not that I'm sick . . . Or stupid . . . But I'm not normal, either. . . . It's like the brain is a computer. But mine works on a different operating system from other people's. And my wiring's different too."

For younger readers and families:

Ex-professional football quarterback Rodney Peete's family shares their story of discovering that one of their twins, R.J., is autistic. "Being twins doesn't make us exactly the same," R.J.'s sister Ryan observes in her children's picture book, "My Brother Charlie" (Scholastic: $16.99, ages 6-10), while the title of the father's book -- "Not My Boy!" (Hyperion, $24.99 ) -- says it all about what the family has learned about patience, acceptance, love and grace.

What about autistic adults? Here are some books worth looking into:

"Look Me in the Eye: My Life With Asperger's" by John Elder Robison (Three Rivers Press: $14.95). The author's Asperger's went undiagnosed until he was 40, by which time he had learned to deal with it through the cultivation of a number of fascinating and odd occupations. Robison made a brief appearance in his brother Augusten Burroughs' memoir, "Running With Scissors."

"Born On A Blue Day" by Daniel Tammet (Free Press: $15 paper). Inside the extraordinary mind of an autistic savant, like the character Dustin Hoffman played in "Rain Man."

"Episodes: My Life as I See It" by Blaze Ginsburg (Roaring Brook Press: $16.99 ages 12 and up). This memoir has its fans, although I find it entirely unreadable, perhaps because I fail to see the use of episodic television as a structure for making sense of life experiences.

"The Speed Of Dark" by Elizabeth Moon (Ballantine/Del Rey: $7.99 paper). Here's some science fiction about a company in the future that relies on the special abilities of autistic employees and about the moral implications of finding a cure for autism.

Sonja Bolle's "Word Play" column appears monthly at www.latimes.com/books.
Copyright © 2010, The Los Angeles Times

HHS, HUD Partner to Meet Housing Needs of People with Disabilities

HHS, HUD Partner to Allow Rental Assistance to Support Independent Living for Non-Elderly Persons with Disabilities
$40 Million Available to Local Housing Agencies to Assist 5,300 Families

WASHINGTON--(BUSINESS WIRE)--Thousands of Americans with disabilities will have housing assistance specifically targeted to meet their needs, Health and Human Services (HHS) Secretary Kathleen Sebelius and Housing and Urban Development (HUD) Secretary Shaun Donovan announced today.

“This number of vouchers to this community is a major milestone for HUD”
.As part of President Obama’s Year of Community Living initiative, HHS and HUD collaborated to provide housing support for non-elderly persons with disabilities to live productive independent lives in their communities rather than in institutional settings.

HUD is offering approximately $40 million to public housing authorities across the country to fund approximately 5,300 Housing Choice Vouchers for non-elderly persons with disabilities, allowing them to live independently. HHS will use its network of state Medicaid agencies and local human service organizations to link eligible individuals and their families to local housing agencies who will administer voucher distribution.

“This number of vouchers to this community is a major milestone for HUD,” said Donovan. “I am pleased that two federal agencies have combined efforts to give these individuals the independence they so desperately want and deserve.”

“This commitment by HHS and HUD to directly link housing support to these individuals will be of immeasurable value not only to them, but to the communities in which they will be living,” said Sebelius. “Individuals with disabilities have so much to contribute to the quality of life in our communities when given the freedom and opportunity to do so.”

Of the 5,300 vouchers set aside as part of this program, up to 1,000 will be specifically targeted for non-elderly individuals with disabilities currently living in institutions but who could move into the community with assistance (Category II). The remaining 4,300 (Category I) can be used for this purpose also, but are targeted for use by non-elderly individuals with disabilities and their families in the community to allow them to access affordable housing that adequately meets their needs.

In addition, HUD is encouraging housing authorities to establish a selection preference to make some, or all, of their Category I allocation available to individuals with disabilities and their families who, without housing assistance, are at risk of institutionalization. Housing authorities have 90 days to submit their applications to HUD. HUD expects to have funding awards ready late fall 2010.

“Many of these individuals are low-income and can not afford market rates for housing. For a number of Americans, these vouchers, along with Medicaid home and community-based services, are essential supports that make the President’s vision for community living possible,” Sebelius noted.

The vouchers will augment work already being done by the Centers for Medicare and Medicaid Services (CMS) through its Medicaid Money Follows the Person (MFP) grant program. Originally set to expire next year, the “Patient Protection and Affordable Care Act of 2010” extended the MFP program through 2016 with an additional appropriation of over $2 billion. The Act also cut to three months, from the previous six months, the amount of time a person must be in an institution to qualify for help making the transition to community life.
Now in its third year, the MFP program has made it possible for almost 6,000 people to live more independent lives by providing necessary supports and services in the community. Some 29 states and the District of Columbia have MFP programs.

The Year of Community Living is an outgrowth of a 1999 Supreme Court decision in Olmstead v. L.C., in which the court ruled that under the Americans with Disabilities Act (ADA) unnecessarily institutionalizing a person with a disability who, with proper support, can live in the community can amount to discrimination. In its ruling, the Court said that institutionalization severely limits the person’s ability to interact with family and friends, to work and to make a life for him or herself.

As a result of the Olmstead ruling, HHS issued guidance to states on how to make their Medicaid programs more responsive to people living with disabilities who wish to reside in the least restrictive setting. Today’s announcement is yet another step in HHS’s 10-year effort to achieve that goal.

To read the full funding announcement, visit HUD’s Web site. More information about the Money Follows the Person program can be found at http://www.cms.hhs.gov/CommunityServices/20_MFP.asp

Understanding Autism in Adulthood

Understanding Autism in Adulthood

Neil S. Greenspan, Immunologist, Department of Pathology at the Case Western Reserve University School of Medicine
April 6, 2010 - Huffington Post   

Recently, a family friend updated my wife about her young adult son who has relatively high-functioning autism. His current situation is reasonably illustrative of the realities for many individuals with similar attributes. He lives alone, has no job, and limited social life. So while the media prefers to focus coverage on the sometimes surprising talents of particular individuals with autism, or of late, on whether the diagnosis of Asperger's Syndrome should be included within or kept distinct from the broader diagnosis of autism, the most fundamental problems confronting the vast majority of young, and even not-so-young, adults with autism-related disabilities are left unaddressed. Across a range of cognitive and communicative abilities, particular challenges arise, in relation to social life, employment, housing, and health care.

Social Life

By diagnostic definition, most individuals with autism have difficulties initiating, establishing or maintaining interpersonal relationships. Not surprisingly, therefore, many young adults with autism, whether they live with their parents or independently of their nuclear families, are socially isolated. Local agencies responsible for those with developmental disabilities typically provide little to no support for socialization or recreation. Unless an enterprising private citizen or group of such citizens (usually parents of an affected individual) steps forward, the social and recreational opportunities for adults with autism remain severely restricted. With modern tools of communication and the considerable energies of many parents, siblings, or other family members, the relevant government agencies could at least more effectively coordinate such efforts. Better yet would be some degree of tangible support.


While the present the employment picture is rather depressing for adolescents and young adults (and for many others) in general, it is especially so for individuals with autism. Employment prospects for young adults with autism are particularly problematic if one is talking about what are referred to as "competitive" positions, as opposed to jobs in sheltered workshops. For individuals with autism who are verbal and have substantial cognitive abilities, such sheltered jobs would be deathly boring and frustrating. Nevertheless, without the requisite social skills, obtaining any position commensurate with ability is extraordinarily difficult. I know of a young adult in my area with an undergraduate engineering degree from a major state university who has been unable to find any job after looking for close to three years.

Although some government agencies provide job coaches for young adults with autism, many job coaches are ineffective. I heard of one young adult with autism who has a competitive job, but his parents have had to pay for both a job coach and a job coach for the first job coach. The end result is that the parents pay more for the job coaching than their son earns. Government and private agencies devoted to assisting those with disabilities will need to develop more effective and creative approaches to finding and maintaining employment for this population if this picture is to improve.


Housing options for adults affected with autism-related conditions and who require some supervision or support are quite limited in most communities. The result is that many such individuals live in situations where their minimal needs are not met. There is probably no solution that will be equally suitable for all affected individuals, but an integrated campus with trained staff members, on-site meal service, and recreational facilities could do much to provide many adults coping with autism a higher quality of life: healthier food and better health care, more recreational opportunities, and greater access to the transportation necessary for employment. Another positive step would be a greater degree of financial reciprocity among states and counties so that individuals with unique companionship needs would have greater opportunity to find the most suitable co-residents.

Health Care

Once individuals with autism graduate from high school, their access to services and support programs declines substantially. In many localities, there may be numerous health care professionals who will treat those with autism, but there is in fact a paucity of physicians, psychologists, and other specialists who actually have useful skills and insights to offer, claims to the contrary notwithstanding. Furthermore, the characteristics widely associated with autism can hamper diagnosis for routine medical problems. I know of a young adult with autism whose acute appendicitis was transformed into chronic appendicitis after the appendix burst and re-sealed. This young adult had visited several physicians about abdominal pain but they failed to diagnose this routine but serious condition. Centers devoted to continuing and coordinated care for those with autism would represent a major advance over the current situation dominated by numerous unproductive visits to health care professionals and fragmented care even when the involved professionals are competent.

Current policies and practices usually condemn adults with autism to constricted lives of mostly sub-optimal choices. Progress on the core deficiencies identified above will have to be achieved if the majority of adults with autism are to have even a modest chance for reasonably fulfilling and productive lives. Continuation of the status quo will represent a moral as well as a policy failure, as warehousing should be for consumer goods, not people.

TX 'Falls Short' in Moving People Out of State Institutions

U.S. official critical of state's living center agreement
Justice Department's civil rights chief says fewer people with mental disabilities should be 'warehoused' by state.

Updated: 10:03 a.m. Saturday, March 27, 2010

The U.S. Department of Justice's civil rights chief said Friday that an agreement with Texas on fixing state institutions for people with mental disabilities "falls short" on moving people out of the facilities.

"There are just so many people who are being warehoused in these institutions, and I think that's a tragedy," Thomas Perez , assistant attorney general for civil rights , said in an interview in Austin. He was in town to speak at a National Conference of State Legislatures redistricting law seminar.

Last June, the Justice Department and Texas entered into an agreement to improve health care and speed up investigations of abuse and neglect at the 13 facilities now known as state supported living centers. It was the culmination of a federal investigation that began in 2005 at the Lubbock facility after reports of abuse and neglect and later expanded to the other institutions.

Perez, an appointee of President Barack Obama, took office in October — months after the Texas deal was signed. It's not clear whether his objections — which signal a departure from what the Obama administration said at the time the deal was announced — could affect Texas. He said he inherited the agreement and needs "to respect that on a certain level." But now, he said, he'd like to implement far more aggressive agreements with states.

"The paradigm prior to our arrival was: 'Let's just make sure that the facilities are safe,'" he said. "The new paradigm is: 'Question No. 1 — What is your plan for moving eligible people into communities? Step two ... What is your plan for ensuring that the facilities are safe?"

Texas' philosophy, one state official said, "may be a little different."

"In Texas, we support choice," said Stephanie Goodman, a spokeswoman for the Health and Human Services Commission , referring to the options of living in institutions or smaller group homes or enrolling in state programs that help people with disabilities live at home.

Still, the state is committed to ensuring that the population of the institutions continues to decline, said Cecilia Fedorov , a spokeswoman of the Department of Aging and Disability Services. About 4,300 now live in the institutions, down from 5,428 in 2000.

Texas allows people who want to leave state supported living centers to skip over a waiting list for home-based programs, and last year the Legislature expanded the number of spots in home-based programs available to living center residents.

"We need to be doing everything we can to make successful transitions for people who wish to move," Fedorov said.

Perez said that an ideal agreement would have specific numbers of people that the state should move out and timelines of when that should happen.

The Texas agreement requires the state to identify people who want to move out of the institutions, help them make that transition, and make sure their needs are met in their new setting, Fedorov said. But there are no specific numbers on how many people should move out.

Without those specifics, said state Rep. Elliott Naishtat , D-Austin, a member of the House Committee on Human Services, "what we're dealing with is wishful thinking at best."

At the time the agreement was signed, U.S. Attorney General Eric Holder praised it.

"The Justice Department is committed to protecting the fundamental rights of all our citizens," Holder said in a June 2009 press release. "This agreement reflects that principle by protecting the civil rights of some of Texas's most vulnerable residents."

In the 1990s, Texas closed two state institutions as part of a lawsuit settlement. Later, the state considered closing more, but after heated hearings, decided not to.

Susan Payne of College Station, whose sister, Diane Ward , lives at Denton State Supported Living Center, said she finds it "very offensive" that Perez would say people are being "warehoused."

"Family members of people who live at the state supported living centers are very, very aware of the options in the community, and the families have chosen this as the best setting," Payne said.

But Perez said that moving people out of institutions is long overdue.

"It's a heck of a lot easier to have everybody in one setting," he said. "But ease should never trump what is right, and what is constitutional."
cmaclaggan@statesman.com; 445-3548

Down syndrome: What We've Learned from Sam

Down syndrome: What We’ve Learned From Sam
Thomas Haskins, Times-Dispatch Columnist
Published: April 4, 2010

As a result of raising a son born with Down Syndrome, I discovered something: Children with special needs are a special blessing to society.

My wife and I were stunned when we were told that Sam was born with mental retardation. I had no experience with persons with disabilities. The prognosis for what Sam could and would be able to achieve was very limited, according to our doctor.

We were told to consider institutionalization; but that option was immediately rejected. Instead, we jumped on the mainstreaming bandwagon.

My wife and I resolved to provide Sam with the best medical treatment and overall quality of life possible. Wherever we went and whatever we did, he would go with us.

Fortunately, we were promptly referred to the Greater Richmond ARC (formerly the Association for Retarded Citizens), where Sam obtained important medical services, mastered critical skills needed in daily living activities, and established lifelong friendships.

Since Sam cannot live independently or support himself, it is our lifetime responsibility to provide for him in terms of his care and quality of life. But we are richer for the experience.

What we discovered is how much Sam gives to us. His life has a purpose; it is important and meaningful.

Sam simply makes our lives better. He slows things down. Our family, like most, lives in the fast lane. My wife and I both had professional careers. We are busy.

Sam has two younger siblings who also demanded attention. They are busy. Sam walks slowly; he eats slowly. He is not in a hurry. He gives us perspective. We learned to be patient.

Certainly there were and are difficult days. I know his brother and sister chafed at some of the restrictions our family experienced in caring for a loved one with intellectual disabilities. When you have a family member with special needs, it affects the entire household.

Sam can be unpredictable. He can react inappropriately in certain situations. We learned that embarrassment is not fatal. And that months later, we can all laugh about an incident that we did not find funny at the time.

I also know that Sam's siblings are better for the experience. Growing up in our family, they developed compassion quickly. They tend to look at things differently, too.

Sam abhors violence. He won't watch The Three Stooges because they hit each other. In a society where movies and television shows have to be rated for violence, that's refreshing.

Sam is generous. If he has money, he wants to buy you lunch. If you admire his hat or sports jersey, he will give it to you.

Sam's feelings are authentic. Sam is always ready and willing to give a smile or hug -- to relative, friend, or stranger.

I've seen from coaching Special Olympics that even on my most miserable or selfish of days, children and adults with intellectual disabilities literally force you to love -- and to acknowledge or reciprocate their affection. Relationships with them are honest.

Many times I resist coaching Special Olympics swimming -- until I get there. Then, for the next hour, Sam and the other swimmers and I laugh and bond and have a great time. I walk out knowing that I would much rather have spent the afternoon with those folks than with many other people I know.

I would not be the same person I am today without Sam. And I would not be the same person I am today without the support we experienced in our community.

Children with substantial intellectual disabilities are dependent their entire life. They do not drive, most do not read, and they do not cook. Caregivers are required to constantly think of someone other than themselves. It teaches you to love.

Even if you are not a caregiver or don't experience these circumstances, you can play a part. Get involved. Support the Special Olympics or the Greater Richmond ARC's upcoming Ladybug fundraiser on May 1 that generates scholarships for families in need of infant and child services.

Attention, local businesses: You can help by providing work for individuals with intellectual disabilities.

The Greater Richmond ARC's Industrial Services has a program where adults with intellectual disabilities can spend their day in meaningful activities and earn a paycheck, as well.

Sam worked at the ARC for seven years after completing high school. Sam has now moved on from that experience by his choice and that is my current challenge. He is at home, waiting for the next chapter in his life.

Consider volunteering. Lend an ear when a caregiver needs to talk. Things aren't the same as they were 30 years ago when family members were the sole caregivers. There is strong support in our community for our loved ones with intellectual disabilities. I see it in my volunteer work. And, I see it firsthand where we live: Everyone recognizes Sam and speaks to him. Many times these are people that I don't know.

Embrace the Sams of the world. Here is what I learned from them: compassion; patience; courage; trust; gentleness; humility; love.

The love is unconditional.

Thomas G. Haskins is a member of the board of directors for The Greater Richmond ARC (http://www.richmondarc.org) and formerly served on the Special Education Advisory Committee to the Henrico County School Board. He was also a former officer and director for the Down's Syndrome Association of Greater Richmond.

Mary Etta Lane, Leader in the Disabilities Movement, Passes Away

Mary Etta Lane, a long time leader and member of NCE, died on April 1 after several years of battling cancer.  In the 1970s, she served as the Assistant Executive Director of The Arc of Illinois.  She then moved on to Iowa, where she served for more than a decade as the Executive Director of The Arc of Iowa.  More recently, she worked for a developmental disabilities provider agency in Missouri.

Mary Etta served as the President of NCE in 1980s.  While in Iowa, she developed a very close relationship with U.S. Senator Tom Harkin, who became and still is a foremost champion of disability rights and supports.  A tireless and forceful advocate for children and adults with intellectual disabilities, she was instrumental in the development of many home and community based services wherever she worked.

Memorial services and burial are being planned for Saturday, April 10 in Kansas City.

World Autism Awareness Day is April 2, 2010

World Autism Awareness Day is April 2, 2010

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and  impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.

Parents, One with Intellectual Disability, Fight for Family

Parents, one with intellectual disability, fight for family
Ann McGlynn | Posted: Sunday, March 28, 2010 1:45 am
Quad City Times

The last time Andy and Kandi Kunde saw their two oldest children was the day before Thanksgiving.

The next time the Maquoketa, Iowa, couple see them will be to do one of two things: start the process of welcoming them back home or to tell the 8- and 9-year-olds goodbye forever.

The Kundes — Kandi is categorized as mentally retarded, or intellectually disabled — already agreed to have their two youngest children taken away by the state. Now they are battling to keep their oldest.

All of the couple’s children have behavioral problems and are diagnosed as mentally retarded, court records state.

“We made mistakes,” Kandi Kunde said. “We know how to parent our kids now. We love our children, no matter what happens. There’s a strong bond.”

Their case began five years ago, when social workers found the family living in deplorable conditions. It continues today after an intensive series of interventions. State workers, attorneys and judges disagree about who should raise two children who may be difficult to adopt out.

The Iowa Court of Appeals, in a split decision, last week upheld the decision of Associate District Judge Arlen Van Zee terminating the Kundes’ parental rights to their oldest children. One of the three judges who heard the case dissented, and the Kundes’ attorney will be asking the Iowa Supreme Court for review.

“They are not bad people. They might not live in a place where you or I might live. And they might not do how you and I might do. But they sure love their kids,” said attorney Stephen Newport. They are also much better parents than they were five years ago, he said. “There are a lot of things these people have done to take advantage of services and then they get slapped in the face.”

The spokesman for the Iowa Attorney General’s office declined comment. The Iowa Department of Human Services could not be reached for comment.

The case

The Kundes first came to the attention of the Iowa Department of Human Services in February 2005. Social workers received a report that the family’s home had garbage on the floors, a kitchen full of dishes with spoiled food, no bathing facilities and a broken hot water heater and toilet.

Five months later, officials found the children were kept in their yard by an electric fence.

In January 2006, a judge approved an unspecified DHS plan for the family and ordered that the children remain with the parents. The family received unspecified services. In August 2006, the state filed a report of abuse after one of the children had a cigarette burn on his thigh. Then in December 2007, officials filed another report after the dad bit one of the children on the arm.

In April 2008, a judge ordered all four children removed from the home and placed into foster care.

The judge noted that the family survived on the children’s government disability payments, that workers went to the family’s home twice a week to bathe the children and that the mom is “unable to manage the children” and the dad “manages them by fear and intimidation.”

“At this time, there are four young, vulnerable special-needs children that live in a home where the parents have not demonstrated that they have the ability to meet minimal standards of cleanliness, nurturing and structure, even with the support of the (department) and the various service providers,” the court said.

The court reviewed the children’s placement in October 2008. The state recommended the two oldest children be returned to the Kundes’ care, despite reservations by social workers and the attorney representing the children, known as a guardian ad litem.

Problems arose immediately, documents say. One of the children, then 6, had a knife in his bedroom and cut a teddy bear and his bed. The parents also allowed a family member who was a registered sex offender into their home during supervised visits. The children’s academic scores went down, and they were eating pencils at school. One child’s hygiene also began to deteriorate.

The two oldest were again removed from the Kundes’ care in January 2009 and placed in foster care. In May 2009, the Kundes lost their parental rights to the two youngest children.

“They did not contest the termination, and it was the hopes of the parties that the parents would be able to safely parent the two older children,” court documents say. The state continued to provide assistance to the family and visitation continued with the two oldest children.

The state filed a petition to terminate the Kundes’ parental rights to the two oldest children in September 2009. The court held a hearing in November.

Three people testified the children should be permanently removed, including the state social worker, the family’s service provider and the state-appointed special advocate. The children’s guardian ad litem testified the children should stay.

The state social worker testified “there was no question that the parents loved the children, but they were not capable of caring appropriately for their children on an ongoing basis. The worker acknowledged that the parents’ hygiene had improved and was not an additional concern at the time of the hearing. Additionally, the worker testified that she had seen some improvements in the father’s care after the parents’ rights to the younger children were terminated.

“The worker testified that based on the history of the case, she did not believe the parents could succeed at unsupervised visitation,” court documents say. “She believed the parents needed ongoing guidance to maintain a clean home and that safety could not be established without lifetime services.”

The guardian ad litem, Stuart Hoover of Dubuque, Iowa, testified he believed the children were not adoptable and “the parents’ home and the parents’ level of caring for the children was adequate.”

He “conceded that he believed if the children were returned to the parents’ care, services would have to continue to be offered for life or until the children turned 18,” court documents say. “But he opined that services would have to continue for the parents and children regardless, due to the mother and the children’s limited mental abilities.”

The children’s prospects, he said, were worse with termination than without.

“With their parents they will at least be with people who actually want and love them,” Hoover testified. “I believe the parents are able to meet the basic needs of these children. Given that I think it would be inappropriate to relegate these children to a succession of foster parents.”

The court terminated their parental rights, saying that while they had shown a “willingness to respond” and a “cooperative spirit,” their ability to respond is the issue.

The Iowa Court of Appeals upheld the termination last week.

“There was simply no evidence the children could safely be returned to the parents’ care at the time of the termination hearing and additional time would not result in the parents being prepared to safely parent the children,” the ruling, supported by two judges, said.

Furthermore, the court must not find that the children are adoptable before terminating parental rights, the court wrote. The termination “best provides for the children’s safety, long-term growth, and physical, mental and emotional needs,” the court concluded.

However, Chief Judge Rosemary Shaw Sackett dissented. “I am not sure the services offered were tailored to the parents’ abilities.” She wanted “efforts to be made to give them the assistance they need.”

History, future

Peter Berns, the chief executive officer of The Arc of the United States, said there is “ample evidence” that people with intellectual disabilities can be successful parents if they have the right support.

“The big question in a case like this ... is were the parents provided with appropriate supports that potentially could have kept that family together,” he said.

Parenting support is the same thing as support for employment, education or daily living, he noted.

The history of parents with intellectual disabilities is not a good one, he said. For years, people were sterilized or immediately had their children taken away.

“There is a dark past in this subject area,” Berns said.

In this case, the court appeared to be “focusing on the functional issues and the welfare of the children. That’s the question that’s lurking behind all of this. Were they making assumptions about what was possible for this family because of one of the parents have an intellectual disability?” Berns said.

The Kundes do not know what happened to their youngest children.

They have beds and toys and clothes awaiting the return of their oldest two. The couple lives in an apartment and have more income than they did before. Their children’s pictures are hanging on the walls.

“My children are just the world to me,” Kandi Kunde said.

Newport, the Kundes’ attorney, believes “our emphasis has to be on keeping families together, not tearing them apart.”

“Here we have a family who wants to be a family, and what do we do? We terminate anyway,” he said.

Labels Affect the Attitudes We Hold

Letter: Labels affect the attitudes we hold
March 31, 2010 02:18 am - The Eagle Tribune

To the editor:

I would like to respond to Taylor Armerding's column about attitudes and words, in particular how a label used in the formally named Department of Mental Retardation impacted services.

My involvement in the name change was not just about making people with mental retardation feel better about themselves. Far more importantly, it was about changing the attitudes and perceptions held by the general public and well-meaning support providers about individuals with mental retardation.

Eliminating the labeling in the department's name was a necessary first step to change how and where we support people. How you label things greatly affects the way you look at them. Kinky Friedman, singer-songwriter, author, and now politician, commented after a stay in a hospital: "Once I became a patient, I ceased being a person." The doctors and nurses were all well-meaning, but they were only treating the condition he was afflicted with and they lost sight of him as an individual.

Now imagine the impact of a lifelong condition labeled in such a way that caused people to focus only on your disability rather than your abilities.

In our pursuit of establishing support systems, it is easy to understand how we might lose sight of the individual if we base programs and supports solely on labels. However well intended, programming based on labels tend to congregate, segregate and control by design.

People developmental disabilities want and need the same things that everyone else wants and needs; meaningful relationships, meaningful activities, being valued and community inclusion; A life like any other a life that gains its joy as an active participant in an inclusive world. Most important of all, they want to be afforded the same rights of choice and control over their lives, just like everyone else.

People with developmental disabilities may need support for many aspects of their lives; the need for support, however should not nullify the right to community inclusion and to make decisions about how and where to live and how and where to be supported.

There are many alternative supports that facilitate inclusion, choice and control, while still meeting the individual needs of the person who required support. Individual Service Options, Family Partnerships, Shared Living, are a few types of supports that make community inclusion easier to accomplish and puts choice and control in the hands of the individual.

Commissioner Elin Howe, and her newly named agency is moving in the right direction, but in order to be successful, inclusion and choice, not labels for those with developmental disabilities, must be embraced by all.

Now, here is the best news of all. On average, the non-labeled individualized community and inclusive supports cost far less than conventional supports. In light of current and future budget concerns, there could not be a better time to change attitudes and actions.

Change the way you look at things, and the things that you look at will change.

Buddy Bostick
Copyright © 1999-2010 cnhi, inc.

The Arc's Liz Savage Attends Historic Event

President Obama Signs Health Care & Education Affordability Reconciliation Act into Law

(March 30, 2010) Today President Obama signed the Health Care and Education Affordability Reconciliation Act into law in a ceremony at Northern Virginia Community College (Alexandria campus.) Dr. Jill Biden, an English professor at the college, introduced the President.

Liz Savage, Director of Health Policy for The Arc and United Cerebral Palsy's Disability Policy Collaboration, attended the historic ceremony.

"This law, coupled with the Patient Protection and Affordable Care Act which President Obama signed last week, will dramatically improve disability related health care and long term services and supports," according to Ms. Savage.

"These laws represent a sea change in access to quality, affordable health care for people with disabilities", she added.

700 'March for Respect' with Arc of Tri-Cities

700 'March for Respect' with Arc of Tri-Cities
By Michelle Dupler, Herald staff writer

About 700 people gathered in Richland's John Dam Plaza on Saturday to honor people with developmental disabilities and make others aware that they're a valuable part of the community.

The third annual "March for Respect" event was organized by The Arc of Tri-Cities and included a walk around the plaza as people with disabilities, advocates, parents and friends held signs and smiled proudly as they proclaimed they're just like everyone else.

"We are not any different," said Michelle Homewood, an Arc member for 22 years, longtime Special Olympics athlete, and mother of a 17-year-old girl with disabilities. "We may learn a little differently, but we're all human and we need the same attention everyone else gets."

The event was intended not only for Arc clients to stand up and be heard, but for the community to gather and show its support. Local luminaries in attendance included Richland Mayor pro tem Ed Revell, Sen. Jerome Delvin, R-Richland, and his wife, Benton County Clerk Josie Delvin.

The Delvins long have been supporters of The Arc and are helping to raise money for a new building that will house expanded programs. Jerome Delvin is the host each year for an Arc trip to Olympia, where the agency's clients, staff and volunteers can tell lawmakers about the issues important to them.

At the top of their list each year is the freedom to make choices about their own lives and the opportunity to have jobs and be as productive as anyone else.

That means convincing the Legislature to pay for services that help people with disabilities live independently and work in their communities.

"Sometimes we don't seem to get the services we need," Homewood said.

Jerome Delvin said he participated in the walk Saturday because he wants to help make the community aware that people with disabilities needn't be limited by them.

"They are part of our community," he said. "They are productive members of our community."

Donna Tracey, The Arc's advocacy manager, said the event also was about thanking the Tri-City community for welcoming people with disabilities.

"We have a variety of individuals with disabilities in our community -- people with hearing impairments, visual impairments, developmental disabilities -- just a gamut," Tracey said.

Homewood said for her the day was about celebrating friendships she's made through The Arc.

"When you get involved in something like The Arc you develop friendships you wouldn't think possible," she said. "You gain knowledge. You gain respect. You gain love."
-- Michelle Dupler: 582-1543; mdupler@tricityherald.com

Read more: http://www.tri-cityherald.com/2010/03/28/956709/700-march-for-respect-with-arc.html#ixzz0jg6pYy7p

New Health Care Law Will Take Load Off Schools, Observers Say

New health care law will take financial load off schools, observers say

Families that include children with disabilities will benefit from the new health care bill 
that President Obama signed into law March 23, observers say.

For example, the law will prevent insurance companies from setting lifetime caps on benefits, effective in six months. It will also prevent such companies from denying coverage to people with preexisting conditions, effective in 2014. Originally, House Speaker Nancy Pelosi's office said the latter provision would become effective in six months for children, but at press time, it appeared that might not be the case.

It also lets parents keep their children on their policies until they turn 26 and makes more families eligible for Medicaid.

But schools also stand to gain from the measure, according to Kathleen Cummins Merry, head of Medicaid reimbursement for the Wayne County (Mich.) Regional Education Service Agency.

"More children will be eligible for Medicaid coverage, which means that schools will be able to seek partial payment for the medical services given to these children in our classrooms; increased numbers of students should mean increased revenue for our schools," she said in an e-mail.

Michigan is particularly well placed to benefit from the new law because it provides special education until children turn 26, if needed, Merry noted.

"One could only hope that our school programs will [now] be able to be reimbursed for the medical services we do provide to those older students," she said.

Reducing the child count

Section 504 coordinators, meanwhile, will rest easier knowing that their students are more likely to get whatever care they need, according to Katy Beh Neas, government relations director for Easter Seals and co-chair of the Education Task Force of the Consortium for Citizens with Disabilities.

For example, the law will make it easier to get care for "a kid, maybe with a physical disability, like cerebral palsy, where they didn't have any special ed needs, but they might need physical therapy," she said.

In fact, the easier it is for children to get health care, the less likely it is that they'll need special education, according to Paul Marchand, staff director for the Disability Policy Collaboration.

"Providing appropriate health care at the earliest possible age will ameliorate some disabilities or potential disabilities or will prevent secondary disabilities from occurring," he said. "That's going to be a huge boon for schools."

The special ed population also will drop if more women receive prenatal care, according to Janis Guerney, public policy codirector at Family Voices.

"It should help because there will be hopefully fewer people with premature births, which lead to disabilities and so forth," she said.

Defraying costs

It also is conceivable that schools could use private insurance to cover certain IDEA Part B services once the caps on lifetime benefits are lifted, according to John Hill, government affairs chair for the National Alliance for Medicaid in Education and Medicaid liaison for the Indiana Education Department.

Hill emphasized that he was speaking for the alliance, not the state.

Caps matter, Hill said, because Part B services must be free, and a school that tapped a family's private insurance would effectively "use up" its lifetime cap even if the school picked up all insurance-related expenses, such as copays and deductibles.

In contrast, Part C is by law the "payor of last resort," meaning administrators must first exhaust all other sources of funds, including a family's private insurance.

"If those caps are done away with, then I think there will be schools that choose to reinvestigate billing private insurance for those services that are on the IEP," Hill said.

Hill has a point, according to Greg Morris, executive director of LEAnet, a consortium of school health officials.

"It is more likely that schools could find themselves billing private insurance" for Part B services under the new law, he said.

In fact, he says, Section 300.154(d)(f)(2) of the Part B rules says states can tap a family's private insurance, if the family consents.

In that case, the rules state, the district can pay any expenses the family would otherwise incur.

"To avoid financial cost to the parents who otherwise would consent to use private insurance, or public benefits or insurance if the parents would incur a cost," the rules state, "the public agency may use its Part B funds to pay the cost that the parents would otherwise have to pay to use the parent's benefits or insurance (e.g. the deductable or co-pay amounts)."

Special Ed Connection® related story:
· Education groups urge passage of reconciliation bill (March 23)
Mark W. Sherman, a Washington bureau correspondent, covers special education issues for LRP Publications.

March 23, 2010
Copyright 2010© LRP Publications

RI House Votes to Remove 'Retardation' in Department Name

RI House votes to remove 'retardation' in dept name
News Date: 03/24/2010
Associated Press (AP) - Providence Bureau

PROVIDENCE, R.I._House lawmakers unanimously voted Wednesday to remove the word "retardation" from the name of the state Department of Mental Health, Retardation, and Hospitals.

The bill, which passed on a vote of 67-0 in the House, would change the name to the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals. The bill must still be passed by the Senate.

The Special Olympics last year launched a campaign to banish the word "retard." The term "mental retardation" was once a common medical term but is now considered by many to be offensive. Instead, the American Psychiatric Association has proposed using the term "intellectual disability."

Rep. Frank Ferri, D-Warwick, and Rep. Joseph McNamara, who co-sponsored the bill, on Wednesday recognized the work of supporters who pushed to remove the term from the department's name, including the head of the agency, Craig Stenning. Stenning said this month he had met with representatives of the Special Olympics and Best Buddies, a group that works people with intellectual and developmental disabilities, about making the change.
"Its time has come. I know there's a national effort to take the 'R word' out, and I'm proud to be a part of that," Ferri said on the House floor shortly before the vote.
Republican Gov. Don Carcieri, whose late sister had Down Syndrome, also said this month he supports the change.

Rhode Island is just the latest state to take up the issue. Others include Connecticut and Massachusetts, which have removed the term "retardation" from state agency names, and West Virginia and Idaho, where lawmakers are considering removing the term "mental retardation" from state law books.

Copyright © 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Disturbing Findings in Wake of 'Fight Club'

Disturbing findings in wake of 'fight club'
Copyright 2010 Houston Chronicle, March 22, 2010, 10:24PM

Criminal fingerprint checks show at least 36 employees continued to work on the state payroll while caring for the mentally disabled — despite being arrested for felonies ranging from indecent exposure, to aggravated assault, child rape and murder.

Of those 36 with arrests, 17 had felony convictions and the remaining 19 still face trial, according to Texas Department of Aging and Disability Services records released to the Houston Chronicle Monday.

The release of the records, first requested six weeks ago, came on the eve of a House committee meeting Tuesday in which lawmakers will discuss for the first time what improvements have been made regarding care at the facilities in the wake of last year's shocking “fight club” incident in Corpus Christi.

While that's less than one percent of the 11,785 DADS employees who were fingerprinted and work at 13 State-Supported Living Centers, formerly known as state schools, the newest reform shows how pre-employment criminal background screens failed to alert the state to employees with criminal records.

Current pre-employment screening only checks for convictions in Texas. The fingerprint checks linked employees to convictions and arrests outside of Texas. Of the 17 with convictions, 13 have been terminated or resigned. The other four are still in “process” according to the agency, which released the numbers without comment.

“Of course it still matters. That amount of people has control over a handful of residents who are unable to communicate abuse or neglect or ward off that type of aggression,” said Beth Mitchell, senior managing attorney for Advocacy Inc., a group that has fought for better care of the mentally disabled in Texas. “You don't want someone like that corrupting other staff. That's what we saw in Corpus Christi. It only took one staff to corrupt a group of staff in the fight club.”

Cell phone fight videos
The incident, at what has now been renamed Corpus Christi State-Supported Living Center, was discovered by police a year ago when a lost cell phone had videos of mentally disabled residents fighting. Voices of the residents' state caretakers could be heard encouraging the residents to fight one another. Since then, four former DADS workers have been convicted as a result.

The fingerprint checks and another new reform, random drug testing — which snared 23 DADS employees who tested positive for drug use — are the only significant progress seen in the year since the cell phone video surfaced and since DADS entered into a settlement late last year with the U.S. Department of Justice.

A “baseline” report on the Corpus Christi facility, the first of 13 to be conducted on each center as part of that DOJ agreement, shows little has been done since the fight club scandal put Texas' care of the mentally disabled in the spotlight.

While the March 10 monitoring report of Corpus Christi State-Supported Living Center revealed “a number of good practices in place,” it also noted “a number of the areas in which there is a need for improvement.”

For example, in the past year, the state has yet to establish a “zero tolerance” of abuse at Corpus Christi, there are no full-time psychiatrists on staff in the Corpus facility and no standard diagnostic procedure in place for residents with psychiatric problems.

“It's pretty clear from the report that they're really far behind in meeting the criteria of the DOJ settlement,” Mitchell said.

Also, the DADS staff in Corpus has not come up with better ways to monitor the physical and nutritional needs of their residents and are not able to pinpoint those residents who are at-risk of abuse.

“The Facility is at the very beginning stages of implementing the process of screening individuals to determine if they fall into an at-risk category,” the report stated.

Documentation problems
In many areas, the monitors noted the Corpus Christi facility failed to keep proper documentation on residents. Dental care records were missing, as was proof that staff reviewed some residents' medication and allergies. The current forms being used at the Corpus Christi center failed to document residents' vocational strengths, needs or preferences.

A spokeswoman for state Rep. Patrick Rose, D-Dripping Springs, the chair of the House Committee on Human Services, said Rose would not be making any comments about the report until Tuesday's meeting. Calls to other members, including state Rep. Abel Herrero, the committee's vice chair, were not returned.

The Arc Applauds House Passage of Health Care Reform Legislation

Washington, D.C. (March 22, 2010) - Press Release

The Arc Applauds House Passage of Health Care Reform Legislation

The Arc of the United States applauds the House of Representative’s passage of the historic health care reform legislation that is certain to rank among the top domestic legislative achievements of this generation.  “This legislation will bring about comprehensive health care reform that will benefit nearly all Americans while reducing the federal deficit.  We are extremely pleased that the House- and Senate-passed Patient Protection and Affordable Health Care Act contains numerous provisions of importance to people with intellectual and developmental disabilities,” said Peter V. Berns, CEO of The Arc.

Provisions include: 


• Prohibiting private health insurance exclusions for pre-existing conditions.
• Eliminating annual and lifetime caps in private insurance policies.
• Restricting the consideration of health status in setting premiums.
• Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).


• Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.
Access to Quality Care
• Improving training of physicians, dentists and allied health professionals on how to treat persons with disabilities.
• Requiring the Centers for Medicare and Medicaid Services to collect data on beneficiaries with disabilities, access to primary care services and the level to which primary care service providers have been trained on disability issues.
• Ensuring prevention programs include a focus on individuals with disabilities.

Long-Term Services and Supports

• Increasing the federal share of Medicaid, known as the Federal Medical Assistance Percentage (or FMAP), for home and community-based services (HCBS) and during periods of economic downturn.
• Allowing states to offer additional services under the 1915(i) Medicaid HCBS Waivers State Plan Option.
• Providing spousal impoverishment protections for HCBS beneficiaries.
• Strengthening long-term services and supports through a two-pronged approach:

1) Taking pressure off of the Medicaid program:  The Community Living Assistance Services and Supports (CLASS) Act would create a national long-term services insurance program, which assists eligible individuals and their families to meet long-term needs with a cash benefit and without forcing them into poverty to receive Medicaid benefits.
2) Improving the Medicaid program:  The Community First Choice Option would help to eliminate the institutional bias by encouraging states to cover personal attendant services under the state’s optional service plan instead of through the waiver system by offering a 6% increase in the federal share of Medicaid for these services.

Cindy Johnson, Chair of the Public Policy Committee of The Arc and a member of its national board said, “People with disabilities—especially young people—can look to a future free from the discrimination of being denied coverage due to preexisting conditions.”  Johnson, who is a parent and a sibling to individuals with disabilities, added “this legislation is a relief for families and represents the hope we have that our needs will be met.  We are grateful to the advocates and the legislators who fought to have these provisions included.”

The Arc greatly looks forward to President Obama’s expected signing of the Patient Protection and Affordable Care Act (H.R.3590) into law early this week.  Enactment of this landmark law will result in the attainment of several of The Arc’s priority public policy goals.  “We are hopeful that the subsequent consideration by the Senate this week of the Reconciliation Act of 2010 (H.R. 48772) will also be successful, resulting in fundamental and lasting improvements to the Nation’s health care system,” Berns said.

The Arc urges families with individuals with disabilities to call their congressional representatives who supported this legislation and thank them.  To learn more about the impact of health care reform and other legislative priorities impacting people with intellectual and developmental disabilities, register for the Disability Policy Seminar (www.disabilitypolicyseminar.org) from April 12-14, 2010, in Washington, D.C.

Sarah's Story: Hard at work despite disabilities

Sarah's Story: Hard at work despite disabilities
By Alyssa Rossomme (arossomme@wsbt.com)
Mar 18, 2010 at 11:22 AM EDT

SOUTH BEND — The month of March is Disability Awareness Month in Indiana. People in the South Bend community and throughout the state are raising awareness about the positive contributions people with disabilities make.

Sarah Schelstraete, a woman with Down syndrome, proves she has what it takes to be a valuable employee. She has worked at Underwriters Laboratories in South Bend for 17 years.

“It's very, very important to me,” Sarah said, about her job, “because I like it here, I love it here.”

“She brings a lot of fun to the laboratory a lot of days,” said Donna Martis, Sarah’s supervisor. “She keeps us all smiling and in a good mood.”

Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.

“She is probably one of our most dependable employees. She has a perfect attendance record. I mean, she's here all the time, and on time,” Martis said.
Stacey Simcox, Sarah's employment consultant, said Sarah is great at her job and her employers are wonderful with her.

“I think they have expectations and standards and they're not afraid to let her know. Oftentimes, other employers don't give someone the chance because they already have the mindset that they're not going to be able to do the job even with the support,” Simcox said.

Martis said Sarah is treated like any other employee. She is expected to follow a schedule. She arrives at work before 8 a.m., and is usually on the clock until 3 or 3:30 p.m.

Myrna Schelstraete, Sarah’s mom, is proud Sarah has a job, and all the advantages that come with it.

“She doesn't take any kind of government help, because she gets medical through here, she gets an IRA, she's on the retirement program here,” said Myrna.

She said Sarah has also gained a sense of independence.

“It's funny, because her dad and I are both retired and sometimes when she gets in one of her little moods she'll say ‘I'm the only one in the house that works,’” Myrna said with a smile.

Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs. She said she wants to work for about 20 more years because there is one more thing she wants to buy — a new house, with a garage, for her mom.
Federal Hiring Event for People with Disabilities
Federal Hiring Event for People with Disabilities on April 26, 2010

  • Have you explored opportunities to work for the Federal government, but were overwhelmed by the application process?   
  • Do you want to work in an environment that embraces diversity and inclusion and the talent you offer?
  • Are you interested in a career opportunity with benefits and the potential for career progression?
  • Are you a Veteran with a 30% or more disability rating who wants to extend your service to your Nation?
If so, now is the time for you to begin your career of service. The Office of Personnel Management (OPM) and the U. S. Department of Labor’s Office of Disability Employment Policy (ODEP) are sponsoring a historic day-long Federal Hiring Event for People with Disabilities. Representatives from many agencies will be reviewing resumes prior to the event, and inviting prospective candidates for interviews.

Visit their website for more information.

Illinois Settlement Could Send 4,500 Into Community-Based Programs

New hope for Illinois’ mentally ill nursing-home residents
Settlement is called historic and could send 4,500 into community-based programs
By David Jackson and Gary Marx, Tribune reporters
March 15, 2010

Thousands of psychiatric patients are likely to move out of nursing homes and into community-based settings in the next five years under a landmark legal agreement designed to reshape Illinois' troubled long-term care system.

The agreement, expected to be filed Monday in federal court in Chicago, lays out a schedule for state officials to offer approximately 4,500 mentally ill nursing home residents the choice to move out of two dozen large facilities known as "institutions for mental diseases," or IMDs, and into smaller settings that experts say are more appropriate and less expensive.

"This is a momentous day for people with disabilities in Illinois," said Benjamin Wolf, associate legal director for the ACLU of Illinois, which filed a lawsuit in 2005 that led to the agreement. "It is the beginning of transforming a system that has been focused on institutionalizing people for decades into one that actually delivers what people want and need."

More than any other state, Illinois relies on nursing facilities to house younger adults with mental illness, including thousands with felony records. A recent Tribune investigation detailed numerous reports of sexual assault, violence and drug abuse in some facilities where psychiatric patients got little treatment or supervision. Some of the homes failed to create adequate programs or discharge plans for residents who milled about or watched TV in dreary common areas.

One of the state's most troubled IMDs, Somerset Place in Uptown, was shuttered Friday after Tribune reports and state and federal inspections documented a pattern of abuse, violence and substandard care.

The ACLU sued Illinois for reform, citing a 1999 U.S. Supreme Court ruling known as the Olmstead decision that requires states to place patients in the least restrictive setting appropriate to their disability.

Settling that lawsuit was considered critical to 38 proposals recently introduced by Gov. Pat Quinn's Nursing Home Safety Task Force, formed in reaction to the Tribune's investigation. Chairman Michael Gelder said a settlement would bring federal court oversight to Quinn's push for alternative treatment and housing options for psychiatric patients.

The panel's proposals also were designed to make facilities safer for elderly and disabled residents. State lawmakers are negotiating with industry representatives and advocates to transform the recommendations into law this spring.

While Monday's settlement covers only residents of the IMDs, there are at least 10,000 other mentally ill people living among elderly and disabled residents in other nursing homes that are not classified as IMDs.

In a statement, Gelder said, "several thousand new units of supportive housing will be identified in partnership with community providers over the next five years to serve those who no longer wish to receive care in such nursing homes. This commitment can be fulfilled, even in this severe recession, by receiving significant federal financial support for care in the community."

Another advocate, Mark Heyrman, a University of Chicago Law School professor and chair of public policy for Mental Health America of Illinois, said it was "a very happy day for everyone who cares about persons with mental illnesses in Illinois. Many years ago the state embarked upon an ill-conceived policy of placing thousands of our most vulnerable citizens in nursing homes where they received little care and little effort was made to help them recover. ... Hundreds of millions of tax dollars have been wasted. This settlement marks the beginning of the end of this tragedy."

Under the settlement, every resident of an IMD will be evaluated to determine whether he or she is eligible to be moved into a less-restrictive setting, and what is needed to thrive there. The evaluation is voluntary, and residents can decline to take part and remain where they are.

All 4,500 IMD residents would be evaluated within two years, and then annually after that. The settlement outlines a strict timetable for moving those who want to leave the IMD -- slowly for the first two years, then more rapidly as the state builds its capacity for serving and treating people in communities.

The former nursing home residents will be placed in so-called supportive housing — subsidized apartments or group homes where staff are on-site or visit frequently to provide therapy, job and life-skills training, substance-abuse programs and case management.

State officials made a commitment to provide adequate therapeutic, vocational and life-skills programs to support the former IMD residents as they transition into communities. The court will appoint a mental health expert to independently monitor the state's compliance with the agreement.

"The main thing is to have someone who has independence and expertise," said Wolf's co-counsel Barry Taylor, legal advocacy director at Equip for Equality.

The lawsuit's plaintiffs contend the agreement will be less costly than the state paying for housing people in IMDs. The state also will be eligible to receive federal Medicaid reimbursements for medications and health care that the former residents receive in a community-based setting. Ed Mullen, managing attorney for community integration at Access Living, said the state could save more than $50 million over the next few years.

The papers expected to be filed Monday ask U.S. District Judge William Hart, who is overseeing the case, to schedule a "fairness hearing" to consider the specifics of the plan. There will be a period of at least two months in which interested parties can file objections, Wolf said.

In reaching the settlement, the state denied violating the Americans with Disabilities Act and other laws that protect people with disabilities.

Tony Zipple, head of the community mental health provider Thresholds, called Monday's settlement a "historic moment for public mental health in Illinois. This is probably the single best opportunity in 10, 20 years to really do systemwide reform and not have people relegated to nursing homes."
Copyright © 2010, Chicago Tribune

Vaccines Could Not Have Caused Autism, U.S. Court Says

Vaccines Could not Have Caused Autism, U.S. Court Says
Submitted by Amit Pathania on Tue, 03/16/2010 - 11:10 FeaturedHealthTNM

On Friday, a court said that vaccines containing preservative called thimerosal, could not have caused autism, but parents believed that vaccine is the main cause of illness in their children.

The special U. S. Court of Federal Claims revealed that they did not find any evidence that vaccines have caused autism in three cases.

The court ruling was against three families who believed that vaccines caused autism in their children in February 2009. The court said that they have been "misled by physicians who are guilty, in my view, of gross medical misjudgment”.

Around 5,300 cases have been registered by parents who blamed vaccines for the disorder in their children.

Autism is a disorder of neural development that affects around one in 110 U. S. children and there is no therapy to cure the disease.

The U. S. Institute of Medicine has revealed that there is no relationship between vaccines and autism.

"It's time to move forward and look for the real causes of autism. There is not a bottomless pit of money with which to fund autism science. We have to use our scarce resources wisely”, said Alison Singer, President of the Autism Science Foundation. 

Putting Spotlight on Former Willowbrook State School

Putting spotlight on former Willowbrook State School
By Judy L. Randall
March 15, 2010, 7:30AM

New York is showcasing a new Web site about the former Willowbrook State School.STATEN ISLAND, N.Y. -- Nearly four decades after Willowbrook State School was mandated shut by the state for the warehousing and inhumane treatment of developmentally disabled children and adults, New York is showcasing a new Web site about the infamous place amid questions about its timing.

A spokeswoman for the state's Office of Mental Retardation and Developmental Disabilities (OMRDD) said its launch of the site last week is not linked to the 38-year-old class action lawsuit, which is still in the courts, brought on behalf of the 6,000 people living at the sprawling facility on March 17, 1972 when the suit was filed.

However, the site was designed by OMRDD's Litigation Support Services.

Nicole Weinstein said the "Beyond Willowbrook" section of OMRDD's Web site "is part of an effort to reach out to those who are serving Willowbrook class members," as service providers and case workers, but would not address questions of, why now?

She said there about 3,000 members of the Willowbrook "class" of '72 still living in New York.

The class action landmark suit, brought by the New York Civil Liberties Union against the state, was instigated prior to the 1975 Willowbrook Consent Decree, which served as a catalyst for reforming treatment for the mentally ill nationwide.

Advocates for the disabled say the case remains in New York Eastern District Court to get the state to live up to its ongoing obligations to former residents in the areas of housing, employment and health care. However, Ms. Weinstein noted it is not an open matter on the court's docket.

In a statement, Ms. Weinstein said the "Web page provides documentation that will assist local Developmental Disabilities Services Offices and voluntary agency staff to comply with the Willowbrook Permanent Injunction," and to "share information" on issues such as aging, community inclusion, due process, guardianship, health care and housing.

Hal Kennedy of New Brighton, an attorney and advocate for the disabled, said he found the timing of the "Beyond Willowbrook" site "surprising."

Kennedy, who is not a party to the suit, also noted factual errors on the Web site, including terming the state school a "developmental center."

"Call it what it was," said Kennedy of the place where families left their severely mentally retarded children, who were then subjected to unspeakable physical and emotional mistreatment.

Still, added Kennedy, "One of my concerns is that the Willowbrook story could get lost. This will help to keep it alive."

Ms. Weinstein said "Beyond Willowbrook" is not meant to be a "historical initiative," but rather part of OMRDD's "ongoing work related to services for the members of the Willowbrook class."

Judy L. Randall is a news reporter for the Advance. She may be reached at randall@siadvance.com

Canada Ratifies UN Treaty on Rights of Persons with Disabilities

March 11, 2010
By CBC News
Canada has ratified the UN Convention on the Rights of Persons with Disabilities on the eve of the Paralympic Games in Vancouver

"Canada is committed to promoting and protecting the rights of persons with disabilities and enabling their full participation in society," Foreign Affairs Minister Lawrence Cannon said Thursday after delivering the ratified document to UN Secretary General Ban Ki-moon in New York City as activist Traci Walters looked on, beaming, from her wheelchair.

"Ratification of this convention underscores the government of Canada's strong commitment to this goal," Cannon said.

"We are officially turning on its head the notion that people with disabilities are helpless, in need of care and in need of pity," Walters said later.

"The government of Canada's ratification today of the convention is an historic event for Canadians with disabilities," said Marie White, national chair of the Council of Canadians with Disabilities. "It signals the end of an era where people with disabilities were seen as objects of charity. Ratification of the convention makes real our goal of recognition as full and equal citizens of Canada."

The convention will require provincial governments to update several laws, including making schools inclusive to all students. That means disabled students can no longer be diverted to special schools as some still are, said Bendina Miller of the Canadian Association of Community Living.

She cited the experience of one young girl with an intellectual disability whose parents tried to enroll her in Grade One: "Their fears were proved when they walked in to the school office and the secretary took one look at them and said, 'We don't do Down's [Syndrome] here.'"

That student and others like her must now be integrated into a neighbourhood school.

However, the convention is about much more than adding wheelchair ramps. It shifts the focus from institutionalizing those with disabilities to housing them in the community and allowing disabled people to challenge in Canadian courts, laws or policies that contravene the international law.

However, the signing did not go ahead without a glitch. The location of the news conference had to be hastily changed when organizers realized the original room was not wheelchair accessible.

Canadian Broadcasting Corporation

DOJ Files to Prevent Segregation of Children with I/DD in AR Facility

Justice Department Files for Immediate Relief Regarding Conditions at Conway Human Development Center|  

The Justice Department today asked the Federal District Court for the Eastern District of Arkansas to take immediate action to prevent children from being admitted to the Conway Human Development Center (CHDC) in Conway, Ark. The department's motion for preliminary injunction aims to prevent the segregation of children with developmental disabilities in dangerous conditions and to address accusations of imminent and serious threats to the safety of the facility's more than 500 current residents.

In January 2009, the Justice Department filed a complaint against the State of Arkansas to enforce the federal requirement that individuals with disabilities be served in the most integrated settings appropriate, and to remedy unconstitutional conditions at CHDC. Information collected through discovery since the filing of the complaint has led the department to conclude that residents face increasing and grave risk of harm with each day that deficiencies are ignored, and that Arkansas fails to serve individuals in the most integrated setting appropriate to the residents' needs.

The United States has concluded that children at the facility are particularly vulnerable given allegations that CHDC residents are subjected to dangerous medication mismanagement and harmful, unnecessary restraints. In recent years, at least three CHDC residents have died, suffered possible permanent organ damage or been at risk of hemorrhaging to death because of psychotropic medication mismanagement. CHDC also continues to utilize 41 different forms of mechanical restraints on both children and adults, including straitjackets, restraint chairs and papoose boards - practices that have been largely barred from other facilities for years.

"The State has a responsibility to ensure the safety of individuals who reside in state-run facilities, and we must act swiftly when the state does not live up to that responsibility," said Thomas E. Perez, Assistant Attorney General in charge of the Civil Rights Division. "Individuals with developmental disabilities have the right to live in the most integrated setting appropriate to their needs, and states must take swift action to ensure that all individuals are accorded these basic rights."

In addition to barring inappropriate restraints and requiring safeguards to prevent dangerous medication practices, the motion seeks to require that the state remove barriers to the provision of supports and services in the community, so that individuals with disabilities, including the approximately 50 children at CHDC, are not forced to choose between an unsafe institution and the denial of necessary services in a more integrated setting.

Between June 1, 2007, and Oct. 1, 2009, a CHDC resident was more likely to die than be discharged to a more integrated setting. On average, CHDC residents die at the age of 46.5 years, compared with the average age of 72 years for other individuals with developmental disabilities living in institutional settings. The number of individuals with developmental disabilities who are waiting to receive community-based services is on the rise in Arkansas, with over 1,300 currently waiting to receive services through the Centers for Medicaid and Medicare Services Alternative Community Services waiver program, with an average wait time of approximately two and a half years.

The Civil Rights Division is authorized to conduct investigations under the Civil Rights of Institutionalized Persons Act (CRIPA) and the Americans with Disabilities Act of 1990 (ADA). CRIPA authorizes the Attorney General to investigate conditions of confinement in certain institutions owned or operated by, or on behalf of, state and local governments. In addition to residential facilities serving persons with developmental disabilities, these institutions include psychiatric hospitals, nursing homes, jails, prisons and juvenile correctional facilities. The ADA authorizes the Attorney General to investigate whether a state is serving individuals in the most integrated settings appropriate to their needs. Please visit http://www.justice.gov/crt to learn more about CRIPA, the ADA and other laws enforced by the Justice Department's Civil Rights Division.

Source: U.S. Department of Justice

McDonald's Pays $90K to Settle Disability Discrimination Lawsuit
McDonald's Pays $90K to Settle Disability Discrimination Lawsuit
Occupational Health & Safety
March 10, 2010

Alstrun LLP, which previously owned and operated a Philadelphia McDonald’s, has agreed to pay $90,000 and furnish significant equitable relief to settle a federal discrimination lawsuit on behalf of a worker with an intellectual disability, the U.S. Equal Employment Opportunity Commission (EEOC) announced recently.

EEOC alleged in the suit that Timothy Artis, a lot and lobby worker at the McDonald’s, was unlawfully harassed based on his intellectual disability, in violation of the Americans With Disabilities Act (ADA). Even though Artis successfully performed his job duties, his super¬visors, other managers, and co-workers repeatedly called him offensive and degrading names because of his disability. The harassment included physical shoving and threats, including one occasion when a co-worker threatened Artis with a box cutter, the EEOC charged in its lawsuit, filed in U.S. District Court for the Eastern District of Pennsylvania.

Artis’s mother complained repeatedly to store officials about the harassment, but the restaurant failed to take appropriate action to stop it. Artis was subsequently compelled to quit due to the unchecked verbal and physical abuse, according to EEOC.

In addition to paying $90,000 to Artis, the two-year consent decree settling the suit provides important equitable relief, including enjoining Alstrun from discriminating based on disability in the future. Alstrun will post and maintain EEOC remedial notices and posters. Further, Alstrun must train all managers and supervisors about the ADA’s protections against disability discrimination and provide reports to the agency about the resolution of any disability discrimination complaints it receives.

“The ADA requires employers to provide a work environment free from unlawful abuse and harassment,” said Acting Regional Attorney Debra Lawrence of EEOC’s Philadelphia District Office. “We are pleased that Alstrun worked with us to resolve this lawsuit for satisfactory monetary relief and equitable remedies designed to prevent future harassment or discrimination.”

During fiscal year 2009, disability discrimination charges reached a record level of 21,451 — an increase of 10 percent from the prior fiscal year.
Texas Lawyer Gets a Man off Death Row

Sherman Lawyer Gets a Man off Death Row
Posted: March 8, 2010 06:36 PM EST - KTEN.COM 

After 20 years in state and federal courts, a Texas man is now off death row, thanks to the help of one Sherman attorney.

Scott Smith picked up Eric Lynn Moore's case 12 years ago, his battle, to prove Moore was mentally retarded and therefore could not be executed.

Back in 1990, Moore and 3 accomplices were convicted of the robbery and death of a woman after entering a home in Collin County and shooting  the elderly woman and her husband.  The man survived but the woman did not.  According to authorities all four men pulled the trigger, passing the gun for person to person.  "It was not a pretty sight," says Smith.

Smith's battle was not to free Moore from prison, but to relieve him from death row due to his mental incapacity.  In 2002, the United Supreme Court declared the execution of mentally retarded persons unconstitutional, declaring it cruel and unusual punishment.  This is what Smith used to win Moore's case in 2004.

Today (March 8, 2010), the Supreme Court said they would not look into the case, thus upholding Moore's 2004 declaration of mental retardation.

"This is not a get out of jail free card just because he is mentally retarded.  He is now serving a life sentence.  He has to serve his time for his crime," says Smith.

Smith says Moore underwent several mental examines but what ultimately took Moore off death row were his elementary school records.  The records showing Moore was entered into special education classes.

Moore is currently serving his life sentence in Livingston.  Smith says, after it was all said in done, Moore was only concerned about getting a new pair of shoes.  That request was denied.

An estimated 1 in 200 cases for appeals on death row are granted.
Christina Lusby, Reports. 

The R-word: White House to Hollywood

The R-word: White House to Hollywood, Stage Set for a 1990s-style showdown
National Post

When Rahm Emanuel scolded liberal groups at a closed-door meeting in Washington last summer for planning to run ads against conservative Democrats, the epithet he chose was not the most intelligent one available. Several witnesses of the meeting told The Wall Street Journal that Mr. Emanuel, President Barack Obama's chief of staff, called the left-leaning advocacy groups' plan 'f---ing retarded.'

Although the meeting had taken place in August, the quote was not reported in the press until about a month ago. Disability activists reacted immediately. In recent months it has become clear that the terms 'retard' and 'retarded' have joined the glossary of words and phrases that public figures cannot utter. The stage has been set for a 1990s-style showdown over whether the R-word can ever be an innocuous epithet or is always too derogatory.

A bid to further eradicate the word from polite discourse was launched last week with a day of awareness for a Special Olympics-led campaign called Spread the Word to End the Word. The campaign's goal was to collect 100,000 pledges not to use the R-words any longer.

Just this week, the Idaho Senate voted unanimously in favour of eradicating the words 'mentally retarded' in state law, as part of a change of what it calls 'archaic and sometimes offensive words.'

"It's a time of change," Jill Egle told The Washington Post earlier this month. She is coexecutive director of the Arc of Northern Virginia, a support group for the disabled, and led a campaign to change the state code in Virginia to erase the word 'retarded.'  But Christopher Fairman, a law professor and free speech advocate, says the campaign to make 'retarded' unspeakable makes him fear 'the targeting of people who really are not using words with the purpose of insulting -- and yet, one slip and it's blown well out of proportion.'

After the Arc of the United States -- formerly, but no longer, the Association of Retarded Citizens-- said Mr. Emanuel 'needs to be taught a lesson in respect for people with disabilities,' Mr. Obama's chief of staff apologized to Special Olympics chairman Tim Shriver. Mr. Emanuel ought to have known he could get into trouble for using 'retard' as an insult. His boss had apologized last March for saying on The Tonight Show that his 129 bowling score 'was like Special Olympics or something.'

In 2008, screenings of the film Tropic Thunder had been picketed by advocates of the intellectually disabled for repeated utterings of 'retard' Two characters, both actors, decide the best Oscar strategy is to play a 'retard,' but not a 'full retard.'

More recently, comedian Sarah Silverman reduced a crowd to near-silence at this year's TED conference in California by telling them she wanted to adopt a 'retarded child' so that people would think she was 'awesome.' The website TechCrunch reported that conference organizer Chris Anderson trashed Ms. Silverman as 'god-awful' on a now-deleted Twitter message.

The campaign to hush the R-word has a famous advocate in Sarah Palin, former candidate for vice-president of the United States and mother to Trig, a son with Down syndrome, who will turn two in April. In a note to her supporters on Facebook, she called for Mr. Emanuel's resignation, equating 'retarded' with 'nigger.'

"Just as we'd be appalled if any public figure of Rahm's stature ever used the 'N-word' or other such inappropriate language, Rahm's slur on all God's children with cognitive and developmental disabilities -- and the people who love them -- is unacceptable, and it's heartbreaking,' she wrote.

Talk radio host Rush Limbaugh reacted in the way expected of a 1990s-vintage conservative, by complaining that people are acting 'like some giant insult's taken place by calling a bunch of people who are retards, retards.'

Prof. Fairman, who teaches law at Ohio State University, says the fuss over the so-called R-word is overblown, and he fears that 1990s-style linguistic inquisitions could ensue from campaigns to remove it from the English language. While Prof. Fairman actually prefers the term "intellectually disabled' for his own speech, he will not be taking the Spread the Word pledge. 'When people say 'retarded,' they normally just mean 'stupid'.... Sort of like 'f--k' doesn't mean sex most of the time, it sort of means anything but that,' he says. He authored a book titled F--k Word Taboo and Protecting Our First Amendment Liberties. He has weathered flak from disability advocates for opinions published in The Washington Post and elsewhere questioning the wisdom of R-word witch hunts.

"Palin had made the connection between 'retarded' and 'nigger.' I don't think there's really as close a parallel between 'nigger' and 'retarded' as there is between 'retarded' and 'gay.' Calling someone retarded is like saying, 'That's so gay.' I'm gay and my 21-year-old daughter says that to me. That's OK. It doesn't even enter her head that she's insulting.'

So what to make, Prof. Fairman asks, of "Rahm Emanuel's or Rush Limbaugh's use, which started the controversy in Washington? I would say neither of those were derogatory and Statistical Manual of Mental Disorders (though possibly not future editions). "I don't think there should be any restrictions of the words we can use, even if it's voluntary restrictions. Certainly, they have the right to try to change the public discourse but the problem that I see with it -- and it's a problem that I've seen with other taboo language -- is that what starts as self-censorship can develop into ... institutional self-censorship,' he says.

Indeed, legislation to scrub the R-word from the law is afoot in many U.S. states, including, most recently, Idaho. State Senator Les Bock was behind the bill intended to strike out dozens of uses of the terms 'mentally retarded' and 'mentally deficient' in state code and replace them with 'intellectually disabled.' " 'Mentally retarded' has been picked up as a word of disrespect or contempt or meaning someone that's really stupid -- or something that's really stupid. A teenager might say, 'Well, that's retarded,' ' he said. 'With the evolution of that word, it really has become an insulting word to use. Just like we don't use the N-word any more, even though it might have been commonplace 150 years ago.'

He points out that there's also one use of "lunatic" and one use of 'idiot' in the code. 'Lunatic' is to be changed to 'person with a mental disability.' Mr. Bock's son has schizophrenia, which gives him a personal interest in this topic. Meanwhile, 'idiot' will become 'persons without understanding.' "Handicapped " will be stricken from the books as well. The bill originated around the time Boise was hosting the 2009 Special Olympics World Winter Games. The state Senator said the bill is necessary to keep legislation in tune with the times. Moreover, he said, 'My view is that language is power and to the extent that we use language to put people down ... it's something that needs to be addressed.'

Maryland has already passed similar legislation, and other states are working to remove offending terms from government agencies' names. Such legislation looks pointless to critics such as Prof. Fairman, who argue that whatever word comes to replace 'retard,' will become pejorative anyway. " The history of the language of intellectual disabilities is a great story for why this is true. The terms 'idiot,' 'feeble-minded,' 'moron' and now 're tard' were all clinical terms. Each one as it is adopted takes on this pejorative, negative connotation,' he explained. ' The same net amount of pain will still be here in the world, unfortunately.'
Copyright © 2010 National Post

SC may gut programs for 26,000 disabled residents
SC may gut programs for 26,000 disabled residents

COLUMBIA, S.C. — Lawmakers are considering cutting all services for nearly 26,000 people with disabilities as South Carolina tries to plug a $560 million budget hole.

Parents say the proposed cuts to day care programs and other services would force them to give up much-needed jobs to stay home and care for their young and adult children.

Andrew J. Imparato, chief executive of the American Association of People with Disabilities, said he is hearing horror stories about budget cuts around the country, but South Carolina is the most extreme example. Shutting down everything but federally required residential care is "the most draconian kind of thing I've heard," he said.

Lawmakers say they have little choice. They are trying to close a shortfall in next year's budget in a heavily Republican state where tax increases are not considered a viable option.

Mary Bennett, a single mother of three, said the budget cuts would mean sending her 11-year-old autistic son to an institution or giving up her job at a Columbia program that helps parents like her. Her son goes to public school a few days a week and a state-funded program cares for him the other days.

"He's completely dependent on other people. He can't do anything himself," said Bennett, 47. "I wouldn't be able to work if they cut his services."

The budget approved by a House committee last week would provide services only for 4,800 people with disabilities living in group homes or institutions, the only type of care the federal government requires the state to provide.

Theoretically, others who need help could move to those facilities, but there are only two open slots in the entire system and those are reserved for those in most dire need.

More than half of the proposed cuts in the current version of next year's $5 billion budget — about $113 million in all — affect Medicaid and other human services programs. The Department of Disabilities and Special Needs would see its funding slashed by $42 million, or 28 percent.

House Ways and Means Committee Chairman Dan Cooper, a Piedmont Republican, said he's trying to find a way to soften the cuts, but there's simply not enough money in other agency budgets to readily make up the difference.

House Minority Leader Harry Ott, a St. Matthews Democrat, railed against the proposed cuts, but doesn't believe they're being used as bargaining chips to free up money elsewhere in the budget. They "just misread their numbers in their haste to get the budget out," Ott said. "They just kept cutting and nobody really looked at the ramifications of what those cuts meant."

Other states have raised taxes to deal with similar problems, but that's unlikely in South Carolina.

"There's just not a willingness to raise taxes in a Republican House," Cooper said.

On Wednesday, activists and people with disabilities packed the Statehouse lobby to ask legislators not to cut their programs. Disabilities Advocacy Day is an annual event, but has more urgency this year.

State Rep. Lanny Littlejohn, R-Spartanburg, was on the House floor reading letters from disabled people who would lose adult day care and work programs.

"We are the only the ones that can help these people and it's our responsibility to do that," he said.

Advocates say the cuts will make it tougher for people to survive or thrive: No more door-widening or ramps for people using wheelchairs; parents caring for adult children with disabilities would lose day care programs where they learn basic skills and earn a little money; 48 percent of the state's Medicaid recipients would lose prescription coverage as the state imposes a three-drug cap instead of the current maximum of 10.

"We just by necessity have to cut that optional stuff," Cooper said.

Other states, like Oklahoma and California, are also cutting services for people with disabilities, but the changes are minor in comparison. Advocates say the South Carolina cuts are shortsighted because they eliminate early-intervention programs that could help prevent more expensive problems down the road.

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says budget cuts in the current fiscal year already have forced him to shut down programs that offer in-home help for parents of children ages 3 to 5 who have disabilities including autism or at risk of developing them. The need for help is "generally decreased if you get to them soon enough," Courtney said.

The state Department of Disabilities and Special Needs estimates that at $9,000 to $13,000 a year, providing in-home services for people with disabilities is less expensive than sending them to an institution or group home, where full-time care costs between $28,500 and $114,000 annually.

Shelia Dull, 46, said that under the proposed budget she would lose day care services for her 24-year-old daughter in Dorchester County that allow her to work a couple of days a week, as well as catheters and other supplies. Her daughter has spina bifida and uses a wheelchair.

"I can't leave her alone for eight hours by herself," Dull said. "What happens if she fell in the bathroom? Who would help her?"

Carolyn Myers, an advocate for people with disabilities, said people often believe parents have the sole obligation to provide care. She said many don't understand how physically demanding it is to care for a child who is older than 13 or an adult.

"You're talking about someone who has to have a lifetime of this kind of care," she said. "It's not like you can go out and hire the neighborhood teenage baby sitter to come in and do the job, either."
House approves bill to limit physical restraint of students

House approves bill to limit physical restraint of students
By Nick Anderson
Washington Post Staff Writer

The House approved a bill Wednesday to limit the physical restraint and seclusion of students in schools, a response to an investigation last year that found numerous reports of students abused or killed through such disciplinary measures.

The bill, approved 262 to 153 with support from Democrats and two dozen Republicans, would establish safety standards in schools and prohibit physical restraint and seclusion of students except to stop imminent danger of injury.

It would bar mechanical restraints such as strapping students to chairs and any restraint that restricts breathing. It also would require schools to notify parents after their child is restrained or secluded.

Rep. George Miller (D-Calif.), who sponsored the bill with Rep. Cathy McMorris Rodgers (R-Wash.), cited the case of a Texas student who died in 2002 after a teacher sat on him in a classroom. That case and others were detailed last year in a Government Accountability Office report.

"These victims included students with disabilities and students without disabilities," Miller said. "Many of these victims were children as young as 3 and 4. And in some cases, children died. Restraint and seclusion are complicated practices. They are emergency interventions that should be used only as a last resort, and only by trained professionals."

Opponents, mostly Republicans, said the bill, which would apply to public and private schools that receive federal education money, would push too far into state and local affairs. But supporters said state laws have proved ineffective.

The legislation awaits Senate action.


Students Teach Students to Stop Using the R-word

Students teaching students: A lesson in civility
Published by The Reporter
Posted: 03/03/2010 01:03:20 AM PST

A group of Will C. Wood High School students today is attempting what some might say is an impossible feat: To persuade their peers to stop insulting each other with the "R" word.

Rather than demanding new school rules, confronting people directly or engaging state legislators, the Wood contingent hopes that educating students will get them to think twice before calling each other "retarded."

The problem, students explain, is that the word is hurtful to those who have mental challenges.

"When someone uses the R-word, there is a parallel drawn between someone who has an intellectual disability and stupidity. It always has a negative connotation," said Amanda Hariri, a member of Best Buddies, a campus organization that promotes friendships between disabled and unimpaired students.

The Wood effort is part of a national Spread the Word to End the Word campaign that took root last year during a youth summit at the Special Olympics World Winter Games. There, a "united passion to promote the positive contributions of people with intellectual disabilities" emerged, according to literature posted on the Web site www.r-word.org. Special Olympics teamed up with Best Buddies and other interested groups -- now numbering more than 200 -- to promote the campaign.

Wood student Zoe Berman learned about it at a Best Buddies conference last summer.

On the local campus, members of Best Buddies, Link Crew and student government have put together music, speeches and a video to explain their point to other students. "We want to make people aware of what they say and how it affects others," Ms. Berman told The Reporter.

That's a lesson more than a few adults would do well to learn.

If there is anything to criticize about this student-led awareness attempt, it is only that high school seems too late. This sort of name-calling typically starts in elementary school.

But all movements have to start somewhere. If Wood students can persuade even some of their classmates to think twice before they drop the R word, their effort will be worth it.

Judge Rules: Move People w/Mental Illness Out of Institutional Housing

Judge Orders New York City to Move Mentally Ill Out of Large, Institutional Housing
By A. G. SULZBERGER - March 1, 2010

New York State must begin moving thousands of people with mental illness into their own apartments or small homes and out of large, institutional adult homes that keep them segregated from society, a federal judge ordered on Monday.

The decision, by Judge Nicholas G. Garaufis of Federal District Court in Brooklyn, followed his ruling in September that the conditions at more than two dozen privately run adult homes in New York City violated the Americans With Disabilities Act by leaving approximately 4,300 mentally ill residents isolated in warehouselike conditions.

The remedial plan offered by Judge Garaufis, drawn from a proposal presented by advocates for the mentally ill that was backed by the Justice Department, calls on New York to develop at least 1,500 units of so-called supported housing a year for the next three years in New York City. That would give nearly all residents the opportunity to move out of adult homes.

Gloria Thomas, who lives in a shared room at the Queens Adult Care Center in Elmhurst, reacted to the ruling with joy. “Thank you Jesus, this is what I’ve been waiting for for the longest time,” said Ms. Thomas, 54, who has been at the home for two years. “I need to get out of here.”

In supported housing, a resident lives alone or in a small group and receives specialized services from counselors who visit as needed.

“This will give adult home residents the opportunity to live the way the rest of us do,” said Jennifer Mathis, deputy legal director of the Bazelon Center for Mental Health Law, which provided legal support for the lawsuit. “In the future people should not be steered to adult homes if they don’t want it and they don’t need it.”

The state is considering an appeal, according to a one-sentence statement from Gov. David A. Paterson’s office.

During a five-week trial last summer, the state argued that advocates had overestimated the demand for supported housing and underestimated the cost, making a quick transition for the bulk of the adult home population unfeasible. It is unclear whether any changes resulting from the lawsuit, which was limited to New York City, will be applied to adult homes elsewhere in the state.

Jeffrey J. Edelman, president of the New York Coalition for Quality Assisted Living, which represents 14 of the 28 large adult homes in the case, called the order irresponsible and deeply disturbing, and he urged the state to appeal. “The judge’s decision, entirely following the advocates’ agenda, could force thousands of the mentally ill from their stable lives in adult homes into independent living situations for which the majority are neither psychiatrically suited nor prepared,” Mr. Edelman said in a statement.

If it stands, the order will transform a system that took shape in the 1960s, when the government embraced adult homes as a way to care for people with mental illness after the rapid closing of large state-run hospitals. But as with the earlier institutions, the adult homes struggled under continued lax state regulation and poor private management.

The lawsuit was filed in 2003 by Disability Advocates, a nonprofit legal services group, after a series of articles in The New York Times that described a system in which residents were poorly monitored and barely cared for, left to swelter in the summer and sometimes subjected to needless medical treatment and operations for Medicaid reimbursement.

The state argued that conditions had markedly improved at adult homes in recent years, but the judge ruled last year that their operation discriminated by keeping residents separated from the outside world and providing them little encouragement to find work, make friends or learn skills like cooking, shopping and budgeting.

“This decision is really important for those of us who want to live in the community,” said Erica von Nardroff, 49, who has lived at Elm York Home for Adults in East Elmhurst for the past three and a half years.

“I need to move on with life,” she added, “and being isolated here is not the way to do it.”

Judge Garaufis’s order rejected the remedy proposed by the state, which continued to dispute many of the findings of his previous rulings and which sought to cap the number of new supported housing units at 1,000, to be made available over five years. “The court is disappointed and, frankly, incredulous that defendants sincerely believed this proposal would suffice,” the judge wrote.

In the order on Monday, the judge said that only people with the most severe mental illness, including those deemed a danger to themselves or others, should be housed in large adult homes. He also said that people who were eligible for supported housing could choose adult homes as long as they had been apprised of their options.

The judge ordered the appointment of a federal monitor to ensure the state followed his plan, and he said both sides must suggest candidates this week.

Victory for The Arc of VA & Medicaid Waiver Program

House budget restores Medicaid waiver program
Media General News Service
Published: February 26, 2010

The 6,000 people on a waiting list for Medicaid-funded services at home got 178 reasons to smile Thursday when the House of Delegates added 178 waiver slots to its budget proposal.

People with disabilities and their supporters had assailed Gov. Bob McDonnell’s proposal to eliminate a consumer-directed Medicaid waiver program that allows elderly or disabled people to hire their own caretakers.

McDonnell had estimated $62.9 million in savings by assuming that half would not receive services from agencies. The consumer-directed waiver program was retained in the House version of the state budget, but the backlog remains a problem.

“We have about 6,000 on the waiting list, and it’s growing because families are choosing to remain in the community” instead of using institutional care for people with severe developmental or intellectual disabilities, said Jamie Liban, executive director of The Arc of Virginia.

Last year, the waiting list grew by 900 people, Liban said. Even with the slots added yesterday, the anticipated number of new waivers has been cut by 956, eliminating 822 waivers for people with intellectual disabilities and 134 waivers for people with developmental disabilities, she said.

Only 100 of the new waivers will be available in the first budget year. At that rate, she said, it would take 60 years to eliminate the waiting list even if no one was ever added.

“We’re incredibly grateful that the House has added those 178 . . . waivers,“ Liban said. “While we’re grateful, there’s still a lot more work to do. The first step will be making sure the Senate includes the full 178.“

Del. Robin A. Abbott, D-Newport News, and M. Kirkland Cox, R-Colonial Heights and vice chair of the House Appropriations Committee, gave emotional floor speeches in favor of the waivers on the House floor Tuesday. Cox said the long waiting list is inexcusable.

All of the new waivers will be for people with intellectual disabilities, who face a waiting list of 5,200 people. The developmental-disabilities waiver program, which has 800 people on a waiting list, hasn’t received new funding in four years, Liban said.

“There are people whose lives depend on these services,“ said Fred Orlove, executive director of the Partnership for People with Disabilities at Virginia Commonwealth University.

Mary Ann Bergeron, executive director of the Virginia Association of Community Services Boards, said: “Without these waiver services, these people would long ago have defaulted to nursing homes or facility care at a much higher cost.“

To Susan Cramer of Hanover County, the waiver program is essential for getting help to take care of daughter Kaitlyn, 22, who weighs only 42 pounds and uses a motorized wheelchair because of multiple disabilities. |

“Being in an institution, she’d probably die in a couple of weeks,“ Cramer said. “That’s an extreme statement, but if she needs to go into a hospital, we can’t even leave her.

“She has pins in her hip and back. If you pick her up incorrectly, you’ll break her shoulder, break her leg. It’s been done. It’s happened.“

US Dept. of Justice Opens Inquiry on Special Needs School

US opens Canton school inquiry
Shock discipline at Rotenberg center prompts concern
By Patricia Wen - Globe Staff / February 25, 2010

The US Department of Justice has opened an investigation into whether a special needs school in Canton violates federal disability laws by disciplining students with electrical skin shocks. It is the first federal probe of the highly scrutinized Judge Rotenberg Educational Center and follows demands from more than 30 disability rights groups from across the country.

In a September 2009 letter, the groups said the facility’s use of “painful and dehumanizing behavioral techniques violates all principles of human rights.’’ They seek to end the school’s use of shock therapy, something that several state inquiries have so far failed to do.

For nearly four decades, the school has generated controversy for its unorthodox methods, administered to roughly half of the 200 students. Many of them have autism, developmental disabilities, or emotional troubles, and some have criminal records or are at risk of hurting themselves. Those students wear electrodes attached to their skin, and staff members can remotely trigger a two-second electrical shock through a hand-held device.

Many parents who have children at the Rotenberg center have supported the school, saying it accepted their children when other institutions turned them away or that the shocks are a better alternative to heavy sedation administered at some facilities.

But advocates for the disabled have been sharply critical, spurring a number of efforts to close the school.

Michael Flammia, an attorney for the Rotenberg Center, said the school has cooperated with all investigators over the years. He defended the state-licensed school as an important and safe facility that has helped hundreds of students each year. He said any child who receives its skin-shock discipline does so only under a court-approved plan.

Renee Wohlenhaus, deputy chief of the Disability Rights Section of the Justice Department, said in a letter last week that her agency would look into whether the Rotenberg Center violates the nation’s laws on the fair treatment of the disabled. She did not respond to a request for an interview. While Wohlenhaus’s letter referred to the inquiry as a routine investigation, federal officials and disability advocates say the investigation is significant because the agency does not choose to probe all complaints they receive.

Nancy Weiss, director of the National Leadership Consortium on Developmental Disabilities and the author of the letter on behalf of the disability groups, said her conversations with Justice Department officials lead her to believe that their probe will be far from “perfunctory.’’

Among the groups signing the letter are major disability rights groups, such as ARC of the United States, the Autism National Committee, and United Cerebral Palsy.

The Massachusetts attorney general’s office is also looking into whether the Rotenberg Center violated any laws in 2007, when staff members were duped by a phone caller who pretended to be a top school official and ordered dozens of punishing electrical shocks on two students. School authorities later destroyed surveillance tapes that recorded the incident.

Charles Dumas, the father of a student who received the punishing shocks, said the attorney general’s office has interviewed him and his son, Kyle, in the past several weeks.  After the incident, the school adopted new procedures to avoid repetition of the incident, Flammia said.

The center has endured two attempts by state agencies to close the facility in the mid-1980s and mid-1990s. Many parents have praised the founder of the Rotenberg Center, Harvard-educated psychologist Matthew Israel, as being a savoir for their extremely difficult children.

The school’s critics maintain that the Rotenberg Center’s methods are barbaric. Some disability advocates say students are punished for behaviors as minor as stopping work for a short time, getting out of their seats, interrupting others, or whispering. 

They say some youngsters are deprived of food and placed in prolonged restraints, sometimes while being shocked.

Polyxane Cobb, a member of the Coalition for the Legal Rights of People with Disabilities in Boston, said she is hopeful that federal authorities will stop the practice. “I don’t think the Department of Justice wastes its time on a casual investigation,’’ she said. 

Palin Snubs Disability Advocates

The Daily Beast: http://bit.ly/ckZy07

She rapped Rahm for the r-word. She attacked The Family Guy. So why are some disability-rights leaders telling Dana Goldstein they're skeptical of Sarah Barracuda?

From crusading against Rahm Emanuel's use of the term "retarded" to criticizing the Fox cartoon Family Guy for depicting a character with Down syndrome whose mother is "governor of Alaska," Sarah Palin has positioned herself in recent weeks as a national spokesperson on disability issues. Yet leading disability-rights organizations in Alaska, Washington, D.C., and across the country tell The Daily Beast they view Palin's increasing outspokenness on the issue with skepticism, noting that on most of their policy priorities—from health-care reform to increased federal funding for community services—Palin is either out of step with many national disability-advocacy groups or has yet to articulate a clear position.

During her vice-presidential nomination speech at the Republican National Convention in 2008, Palin—whose 22-month-old son, Trig, has Down syndrome—vowed that "special-needs" families would "have a friend and advocate in the White House" if John McCain were elected. In May 2009, the Long Island-based Independent Group Home Living Association, which works with developmentally disabled individuals in New York state, named Palin its "Honoree of the Year." During a trip to New York, Palin spoke at a benefit dinner for the group, and later attended an Autism Speaks fundraising walk in Westchester County. But on the policy level, Palin has a mixed and murky record on disability organizations' priorities.

"Since the end of the presidential election, we haven't heard Sarah Palin articulate any specific policy proposals [on disability]," said Peter Berns, CEO of The Arc, a Beltway lobbying group representing people with intellectual disabilities. Like nine other national disability-rights leaders The Daily Beast spoke to, Berns pointed to Palin's excusing of Rush Limbaugh's use of the word "retarded"—even as she hammered Emanuel, President Obama's chief of staff, for the same sin—as evidence of her lack of seriousness. "It has unfortunately politicized the issue in ways that are not productive, and it has converted what really are bipartisan issues into partisan ones," Berns said.

Indeed, though the Democratic Party has historically been more enthusiastic about funding health-care and education programs that serve disabled people, the key pieces of legislation addressing disability rights, such as the Americans with Disabilities Act of 1990 and the Individuals with Disabilities Education Act (IDEA) of 1975, passed with bipartisan support. Bob Dole, Orin Hatch, Sam Brownback, and Cathy McMorris Rodgers are among the Republican politicians who have prioritized disability policy issues.

So far, Palin has not demonstrated the same depth of interest. Adam Pockriss, a spokesperson for Autism Speaks, wrote in an email to The Daily Beast that since the 2009 Westchester fundraising walk, "Sarah Palin hasn’t had any further involvement with Autism Speaks; nor has she taken a position on any autism-related policy items, to our knowledge."


More Catholic Schools Reaching Out to Special-needs Students

More Catholic Schools Reaching Out to Special-needs Students
By Michael Alison Chandler
Washington Post Staff Writer - Tuesday, February 23, 2010; B01

A math class for students with intellectual disabilities at Paul VI Catholic High School in Fairfax practiced naming dates on a calendar one recent morning and deciphering what time it is when the big hand is on the 10 and the little hand is on the 11. But first, the teacher led them in a prayer.

"Father in heaven, we offer you this class and all that we may accomplish today," they said together.

Federal law requires that public schools offer a free, appropriate education for students with disabilities, and federal and state governments subsidize the higher costs of smaller classes and extra resources. Catholic schools have no such legal mandate, and financial constraints have historically made it difficult for them to offer similar specialized services.

That is starting to change.

Forty-two percent of Catholic elementary schools in the United States had a resource teacher to help students with special needs in 2008-09, up from 28 percent in 2001-02, according to the National Catholic Educational Association. The Arlington County-based group hosts conferences to help schools establish relevant programs and offers scholarships to teachers pursuing special-education degrees.

"Children with disabilities have a right to a faith-based education," said Bernadette McManigal, superintendent of Arlington Diocese Catholic schools. "We want to provide that as best we can."

Many Catholic schools now offer support for students with learning disabilities such as attention-deficit disorder or Asperger syndrome. The portion equipped to enroll students with intellectual disabilities, historically defined as those scoring below 70 or 75 on an IQ test, is still small, but it, too, is growing.

In the Washington Archdiocese, which covers the District and part of Maryland, one school offered services for students with intellectual disabilities in 1998. Now, six of 61 elementary schools serve such students, and two more -- the Shrine of the Most Blessed Sacrament School in the District and St. Mary's School of Piscataway in Clinton -- are starting programs next year. Bishop McNamara High School in Forestville plans to join them in the next two years.

Many new programs in the District and Maryland have been helped by a fundraising group called the Catholic Coalition for Special Education. Since 2004, it has awarded grants worth more than $400,000 for schools to hire special-education teachers and help teachers pursue degrees in special education.

Francesca Pellegrino of Kensington started the organization after a futile search for a Catholic school for her son. Alex, now 18, has intellectual disabilities and attends Walt Whitman High School in Bethesda. "It never worked out for us, but I am committed to helping other families who want a faith-centered education for their children," Pellegrino said.

In Northern Virginia, Pope John Paul the Great Catholic High School opened two years ago in Dumfries with a program for students with intellectual disabilities. St. Mark Catholic School in Vienna is the only elementary school in the Arlington Diocese with a similar program.

The "Options Program" at Paul VI High in Fairfax was started in 1998 by parents who wanted the same Catholic education for all their children, including those with intellectual disabilities. The parents found a model program at a Catholic school in Seattle, approached Paul VI leaders with a proposal and helped raise more than $200,000 to get it off the ground. A decade later, the program has 10 students and 36 alumni, and it has become a model for six programs across the country.

It's still funded partly through donations, and families pay higher tuition -- about $2,700 above the annual $9,740.
At Paul VI, students in the Options Program work in small groups in a separate classroom, learning core academic subjects. Often, they get extra help from nondisabled students who volunteer to tutor during their study halls.

Disabled students take a special course focused on life skills, including appropriate social behavior and basic job training. They can also enroll in mainstream elective courses, such as health, psychology, public speaking and fashion merchandising.

After classes, many take part in school plays or the Special Olympics. Some go out for cheerleading or the wrestling team.

Karen Hoppe of Fairfax said her family chose Paul VI primarily to provide a religious education for their son Greg, who graduated last spring.

"Faith comes very easily and naturally to him," she said. "We knew he would do well in an environment that allows him to speak that language."

But the emphasis on faith also creates a more accepting social environment, she said. Her son made lots of friends and graduated with sharper social skills that are helping him as he enters the working world, she said.

Hoppe said the other students "are not plastic saints."

"They are normal teenagers," she said. "But they look at our kids differently. They understand our kids have innate value and worth because we are all God's children."
Arc of VA Families Outraged by Elected Official's Remarks

FOR IMMEDIATE RELEASE:  February 22, 2010
Contact:  Jamie Liban-  804.649.8481 ext. 101 or jliban@thearcofva.org

The Arc of Virginia: Families Outraged By Delegate Robert Marshall’s Remarks

The Arc of Virginia is surprised and disappointed by remarks attributed to Delegate Robert Marshall indicating he believes children with disabilities were "God's punishment."   Such unfortunate remarks continue to lend credence to the stigma people with disabilities and their families are fighting to overcome. 

Since this issue went public today, many family members who heard the audio remarks have contacted The Arc to express their outrage over Delegate Marshall’s statements.   Delegate Marshall has issued an apology saying he “regrets any misimpression my poorly chosen words may have created as to my deep commitment to fighting for these vulnerable children and their families.”  The Arc takes him at his word. 

Mr. Howard Cullum, President of The Arc of Virginia said, “Many of our families are struggling with the 24/7 care taking demands.  It is rewarding but hard work.  Families don’t appreciate statements that can be construed to connect having a disabled child with some religious punishment.  Our families don’t need the grief or the guilt.”

According to Mr. Cullum, “The Arc families are especially sensitive now because of proposed state budget cuts to critical services that support persons with intellectual or developmental disabilities.  The Arc appreciates yesterday’s House and Senate budget reports that seek to restore some of the services.  However, the important waiver program is still slated to lose 1,134 waiver slots that were scheduled to begin reducing the long wait lists.  Our wait list families are in pain and crisis.”

The waiver wait list is now over 6,000 persons and growing rapidly.  The lack of waivers means families will now have to wait at least another two years before any new waiver slots are available.  Some families have already been waiting for years.  The safety net for our families is in tatters.

Historically, Virginia's track record for valuing the lives of people with disabilities has not been good.  The Commonwealth was notorious for its history of involuntary sterilization, for its state-sponsored segregation and institutionalization and for its minimal help for families. Even today, Virginia is currently ranked 46th in the country for its community support of people with developmental disabilities and their families. 

At a time when the majority of states are moving people with intellectual disabilities out of institutions, Virginia is the only state seeking to rebuild costly, segregated state institutions for people with intellectual disabilities.  The Arc is hopeful that Delegate Marshall’s comments, however offensive to our families, draw public attention to the plight of families caring for persons with disabilities in our state.    


Close CT's Last Institution for People with I/DD

Feb 21, 2010 – Hartford Courant
Southbury: Morally wrong, wasteful

For moral and fiscal reasons it's time to close Connecticut's last institution for the intellectually disabled, the Southbury Training School.

The institution is outrageously expensive, strikingly out of date and defies modern thinking that the intellectually disabled are better off when integrated into the community.

For 15 years state political leaders have refused to confront the legal and moral contradictions that Southbury presents. They should begin the process of expeditiously closing this institution.

Southbury is needlessly bleeding money. The intellectually disabled clients - persons once described as having mental retardation - would be better off in residential community settings that in the private sector operate at one-third the cost of Southbury.

It is not only morally the right thing to do, but legally as well.

In 1999 the U.S. Supreme Court ruled in the Olmstead case that under Title II of the Americans with Disabilities Act states, under certain conditions, are required to place people with mental disabilities in community settings. Segregating individuals in institutions when community placement is appropriate was determined to be discrimination.

Connecticut was once a leader in this respect. Seaside Regional Center closed in 1996 and the state shuttered Mansfield Training School, which housed more than 1,600 intellectually disabled clients in its heyday, in 1993. The state moved these residents to group homes, apartments, or other housing, with support services to integrate them in the community.

Except for Southbury, where there was resistance that led to a lawsuit still being litigated today.

Last week in U.S. District Court in New Haven, hearings got under way to address the court's 2008 finding that in its operation of Southbury the state had violated the statutory and constitutional rights of its residents. It did so by failing to make independent, professional judgments on whether residents could benefit by leaving the institution. Further, it failed to make such placements available to residents who wanted them. The hearings will continue next month.

Former Republican Gov. John G. Rowland started the legal battle in the late 1990s by refusing to deinstitutionalize Southbury. Instead, he advocated spending millions to upgrade the institution and bring it into compliance. There were 793 residents at Southbury then and the majority of them were 45 or older.

Today the average age of the 458 remaining Southbury clients (the state halted admissions in the mid-1980s) is 62, and for many of them the 1,600-acre campus has been their home for decades. But experts say most would still adapt and benefit from community, rather than institutional living.

And so would taxpayers. In a state facing a fiscal crisis, it costs about $350,000 annually to care for every Southbury client, opposed to about $122,000 if they were in a private-sector, community-living situation.

Southbury employs 1,325 people to care for 458, and according to the state, current collective bargaining agreements require public operation of community residences for Southbury residents if the institution closes. That would require $100 million in new state bonding, a state spokeswoman said.

Southbury's 2009 budget was $96.5 million, 10 percent of the almost $1 billion allocated to the state Department of Developmental Services last year. In other words, because of Southbury the department that serves almost 20,000 people with developmental disabilities ends up spending about 10 percent of its budget on 2 percent of its population.

The state has yet to show its hand in the latest court proceedings, but Friday a spokesman for Gov. M. Jodi Rell said, "the governor continues to support community placement for residents who choose to move and the current and future operation of STS for residents who choose to remain."

That is disappointing. Southbury is the last institution of its type in New England. It is a throwback to another time, when rather than integrating the mentally retarded, society warehoused them.

For inexplicable reasons Connecticut's politicians have never adequately addressed the legal and moral questions on Southbury. Now, it looks like Gov. Rell will squander an opportunity to do the right thing in fiscal hard times.

Autism Bill Passes in VA Senate

Autism Bill Pass In VA Senate
WTKR-TV3, 6:15 PM EST, February 17, 2010

A bill mandating insurers to cover treatment of autistic children ages 2 to 6 has passed in the Virginia Senate and is moving on to the House of Delegates.

The law would require health insurance providers to provide coverage of up to $35,000 a year for treatment of the brain disorder. There are already laws requiring insurance to pay for coverage in about a dozen states.

Four-year-old Sean O'Keefe falls into the category of children with autism who would benefit from this bill. His mother, Vania, has had to quit her job in order to shuttle Sean to school in Chesapeake, speech therapy in Virginia Beach and even more testing in Suffolk. She spends about $500 a week for services not covered by health insurance.

Vania says, "We've been basically going through our savings for Sean's therapy. We've been doing whatever we can. We even tapped into our 14-year-old's college fund to pay for it. Pretty soon that's going to be gone."

Senator Janet Howell introduced the bill to mandate insurance companies cover autism treatment for children. It won by a 27-13 vote. However, despite provisions that limit age and allows small businesses to opt-out, opponents say it will increase insurance premiums. Insurers are further contending that autism treatment is educational, not medical.

Virginia Beach Senator Frank Wagner is voting against the bill for another reason. He says, "If we're going to apply it to the businesses on their health insurance plans, then we ought to be willing to step forward and treat our employees that work for the Commonwealth of Virginia in the same manner."

As passed, the bill will-not cover state employees because Virginia simply can't afford it. Proponents to the bill say that shouldn't stop businesses that can.

Copyright © 2010, WTKR-TV

The R-Word: "Like a Knife in the Heart"
Shepherd: Political points that jab like a knife in the heart
Suzanne Shepherd, Local Contributor
Published: 6:27 p.m. Monday, Feb. 15, 2010, statesmen.com

In 2008, DreamWorks released "Tropic Thunder" starring Ben Stiller. Repeated use of the word "retard" provoked outrage and protests from the community of people who have intellectual disabilities, and those of us who are their families, friends and co-workers.

I led one of those protests because you cannot imagine the hurt caused by that word if you don't know — or care about —people with intellectual disabilities. A year and a half later, that word still permeates our culture on TV, radio and the movies. White House Chief of Staff Rahm Emanuel used it to denigrate those who disagree with the administration on health care. Rush Limbaugh jumped on the bandwagon, saying "Our political correct society is acting like some giant insult's taken place by calling a bunch of people who are retards, retards." He called Emanuel's meeting with advocates for those with intellectual disabilities a "retard summit at the White House." Sarah Palin, mother of a child with Down syndrome, denounced the use of the word both times, but called only for Emanuel's resignation.

The only thing missing in this tempest is understanding that people with intellectual disabilities merit respect. They have feelings. We should be able to muster a modicum of civility toward them.

My son Jack has Down syndrome. He is my hero. He's not perfect, and he spends more time in the principal's office than he should. But he gets up every day and works twice as hard as other kids to be able to do what kids do. He swims like a fish but can't ride a bike. He reads and writes and has a great sense of humor. He reminds my husband and I that he can't stand the music we play on the car radio, and insists that we find some Lady Gaga. I love him.

His life has challenges of every kind. He deals with them, but what he doesn't need is adults like Stiller, Emanuel and Limbaugh kicking him in the gut by tossing around that word to score political points.

I know what you're saying. You're saying "Hey, get a life! Lighten up! This is way too PC! 'Retard' is just a word like 'stupid' and 'idiot'. Find something else to worry about. Retard!"

That's what you say and this is what I hear: You insist on being able to demean and verbally abuse my son with a hateful word that carries a long history of abuse. Every time it's used, it gives kids on the playground permission to pick that word up and aim it at Jack.

I know the word "retard" didn't start with Emanuel or Limbaugh. Jack's heard it before. Not that often (his classmates are great kids), but he has. Our kids are smart enough to know when they're being ridiculed. I shouldn't have to tell you how it feels to watch my son get ridiculed with that word, but "knife in the heart" about covers it.

Our community hoped that word would go away after "Something about Mary," after Carlos Mencia, after "Tropic Thunder," and especially after the Special Olympics began its "End the R-Word" campaign. But it's still here. So I must say to everyone who uses that word: Enough. Think about our sons and daughters, our brothers and sisters, our neighbors and friends with intellectual disabilities, and stop hurting people. This is not about political correctness, it's about decency.

Shepherd is president of the Down Syndrome Association of Central Texas. Jack is a sixth-grader at a local middle school.
The Case Against Banning the Word 'Retard'
The case against banning the word 'retard'
By Christopher M. Fairman
Sunday, February 14, 2010; B01

Does the word "retard" have less than three weeks to live?

Long before Rahm Emanuel, Sarah Palin and Rush Limbaugh made the word fodder for political controversy and late-night punch lines, a movement was underway to eliminate it from everyday conversation. Saying, irrefutably, that the word and its variations are hurtful to many, the Special Olympics is leading a campaign to end its use and is promoting a national awareness day on March 3. Nearly 60,000 people have signed on to the following promise on www.r-word.org: "I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

I sympathize with the effort, but I won't be making that pledge. It's not that I've come to praise the word "retard"; I just don't think we should bury it. If the history of offensive terms in America shows anything, it is that words themselves are not the culprit; the meaning we attach to them is, and such meanings change dramatically over time and across communities. The term "mentally retarded" was itself introduced by the medical establishment in the 20th century to supplant other terms that had been deemed offensive. Similarly, the words "gay" and "queer" and even the N-word can be insulting, friendly, identifying or academic in different contexts.

The varied and evolving uses of such words ultimately render self-censorship campaigns unnecessary. And restricting speech of any kind comes with a potential price -- needlessly institutionalized taboos, government censorship or abridged freedom of expression -- that we should be wary of paying.

The latest battle over the R-word kicked into high gear with a Jan. 26 Wall Street Journal report that last summer White House Chief of Staff Rahm Emanuel blasted liberal activists unhappy with the pace of health-care reform, deriding their strategies as "[expletive] retarded." Palin, the mother of a special-needs child, quickly took to Facebook to demand Emanuel's firing, likening the offensiveness of the R-word to that of the N-word. Limbaugh seized the low ground, saying he found nothing wrong with "calling a bunch of people who are retards, retards," and Palin rushed to his defense, saying Limbaugh had used the word satirically. Comedy Central's Stephen Colbert took her up on it, calling Palin an "[expletive] retard" and adding, with a smile: "You see? It's satire!"

Emanuel apologized and promised to take the R-Word.org pledge, but as March 3 nears, the word may already be an endangered species. Forty-eight states have voted to remove the term "mental retardation" from government agencies and state codes, and legislation is pending in Congress to strike it from any federal statutes that still use it, such as the Individuals With Disabilities Education Act. The largest advocacy group for the intellectually disabled, the Association for Retarded Citizens, is now simply the Arc. Similarly, the American Association of Mental Retardation is now the American Association on Intellectual and Developmental Disabilities. The Centers for Disease Control and Prevention now use "intellectual disability" in place of "mental retardation." The diagnostic manuals used by medical professionals also embrace "intellectual disability" as the official label. Behind the changes is the belief that "retardation" doesn't communicate dignity and respect.

The irony is that the use of "mental retardation" and its variants was originally an attempt to convey greater dignity and respect than previous labels had. While the verb "retard" -- meaning to delay or hinder -- has roots in the 15th century, its use in reference to mental development didn't occur until the late 19th and early 20th centuries, when medical texts began to describe children with "retarded mental development," "retarded children" and "mentally retarded patients." By the 1960s, "mental retardation" became the preferred medical term, gradually replacing previous diagnostic standards such as "idiot," "imbecile" and "moron" -- terms that had come to carry pejorative connotations.

As I was growing up in the 1970s, my father worked for the Texas Department of Mental Health and Mental Retardation, one of the now-renamed state agencies. The term "retardation" was common in my home and life, but it was sterile and clinical. It is only in the past generation that the medical term turned into the slang "retard" and gained power as an insult. The shift is even apparent in popular movies. There was little public controversy when Matt Dillon tried to woo Cameron Diaz in the 1998 hit comedy "There's Something About Mary" by confessing his passion: "I work with retards." (Diaz's character, Mary, had a mentally disabled brother.) But 10 years later, in the comedy "Tropic Thunder," Robert Downey Jr.'s use of the phrase "full retard" led to picketing and calls for a boycott.

What happened to make the word a target for extinction?

All cultures have taboos. Western culture, particularly in the United States, has several taboos surrounding sexuality, grounded largely in a subconscious fear of the parade of horribles -- adultery, unwanted pregnancy, incest, venereal disease -- that might befall us because of some sexual behaviors. Sometimes the taboo extends to even uttering the words that describe certain behaviors. You can see word taboo at work in the way Emanuel's blunder was reported: "[expletive] retarded." It's still okay to print the R-word. The F-word? Forget it.

For years, I've been researching taboo language and its interaction with the law, and I have written a law review article and recently a book, both titled with the unprintable four letter F-word. The resilience of word taboos, the multiple usages and meanings of a single word, the rise of self-censorship, and the risks of institutionalized taboo and ultimately censorship are all core issues surrounding the F-word, and they help explain what is happening -- and may happen still -- with the R-word.

Mental disorders also carry cultural taboos. For centuries, mental illness and disability were poorly understood; as recently as the 1800s, they were thought to be the work of devils and demons. Because the origins of mental illness were a mystery, fears that such conditions could be contagious led to isolation through institutionalization. Shame was often attached to individuals and their families, and the result was stigma.

Fortunately, we've come a long way from those days. It's precisely the new enlightenment and openness about mental disabilities that allow Palin to launch the controversy over "retard." But at a subconscious level, the underlying taboo may explain why we constantly seek new terms for this type of disability, new ways to avoid the old stigmas. Invariably, negative connotations materialize around whatever new word is used; "idiot" becomes an insult and gives way to "retardation," which in turn suffers the same fate, leading to "intellectual disability." This illustrates one of the recurring follies of speech restriction: While there may be another word to use, a negative connotation eventually is found. Offense -- both given and taken -- is inevitable.

Whatever future offensiveness may emerge, though, are we not better off by purging today's insulting language and making our discourse a little kinder? That is the argument of self-censorship advocates such as Palin, who draws parallels between the use of the R-word and the N-word -- the most powerful and insulting of all racial epithets. In some respects, the comparison seems overblown. The N-word invokes some of the foulest chapters in our nation's history; "retard," however harsh, pales in comparison. But there still may be some guidance to be gleaned.

While the N-word endures as an insult, it is so stigmatized that its use is no longer tolerated in public discourse. This is a positive step for us all, of course, but its containment does not come without costs. As Harvard law professor Randall Kennedy described in his 2002 book on the subject, stigmatizing the word has elicited new problems, including an overeagerness to detect insult where none is intended and the use of excessively harsh punishment against those who use the word wrongly.

I've coined a term for overzealous or extreme responses to insulting words: "word fetish." Those under the influence of word fetish aren't content to refrain from using a certain word; they are set on eradicating any use by others. A classic example was the plight of David Howard, a white employee in the D.C. mayor's office in 1999. Howard told staff members that because of budget cuts, he would have to be "niggardly" with available funds. Wrongly believing "niggardly" was a variation of the N-word, black subordinates lobbied for his resignation. Howard ultimately resigned after public protests, though he was soon reinstated. If the campaign against "retard" is successful, an identical risk of word fetish exists. (Imagine that Emanuel had spoken of "retarding the opposition" -- would that be unacceptable?)

Like virtually every word in our language, the N-word has multiple uses. While its use as an insult has decreased, there has been a resurgence of the word as a term of identification, even affection, among some African Americans. But should certain groups of people, to the exclusion of others, be allowed to reclaim certain words? If "retard" or "retarded" were similarly restricted, could intellectually disabled individuals appropriate the term for self-identification, essentially reclaiming its original use or developing a new one?

Over time, word fetish can evolve into censorship among private organizations and ultimately direct government control of language and institutionalized word taboo. During the 1980s and 1990s, for example, many colleges and universities sought to reduce discrimination by developing speech codes, often targeting racial hate speech such as the N-word. Even with the most combustible insults, however, there must be some accommodation to their continued use; freedom of expression surely embraces unpopular, even insulting, speech. Luckily, speech codes that have been challenged in court have generally lost because they violated the First Amendment.

The risk of direct government censorship of the word "retard" is real. The New Zealand chapter of the Special Olympics is already calling on the country's Broadcasting Standards Authority (equivalent to our Federal Communications Commission) to deem the word "retard" unacceptable for broadcast. This plea is based upon a single incident involving New Zealand television personality Paul Henry, who described the runner-up in the "Britain's Got Talent" competition, Susan Boyle, as retarded. It is not difficult to imagine calls for a similar broadcast ban emerging here.

The current public awareness campaign surrounding the use of the word "gay" offers better lessons and parallels for the R-word debate. Advocacy groups contend that the phrase "that's so gay" fosters homophobia and that anti-gay language is directly related to violence and harassment against homosexuals. At the same time, there is recognition that much anti-gay language is uttered carelessly and isn't necessarily intended as hurtful -- as is probably the case with uses of "retard." The Ad Council and the Gay, Lesbian and Straight Education Network have developed a Web site, ThinkB4YouSpeak.com, that, much like R-Word.org, encourages the public to sign a pledge to cease using the phrase. (The slogan: "Saying that's so gay is so yesterday.")

By increasing sensitivity and awareness, the campaign hopes to encourage people to think about the possible consequences of their word choices. Such reflection would presumably lead individuals to censor themselves once they understand that others can be hurt by their language.

Inherent in this idea is the realization that words have multiple meanings and that those meanings depend on the context and circumstances surrounding any particular statement. For example, "gay" is a term of identification for homosexuals, but it also can be used as an all-purpose put-down: "That's so gay." Those using it as an insult don't intend to say "that's so homosexual," nor do they necessarily make the conscious leap that homosexuality is bad. (Indeed, the success of the ThinkB4YouSpeak.com campaign depends on this distinction.)

Similarly, the R-word has multiple usages. When Emanuel calls fellow Democrats "retarded" for jeopardizing a legislative plan, the term is a stand-in for "stupid" or "misguided" or "dumb" -- it obviously does not mean that they meet the IQ diagnostic standard for intellectual disability. It is quite another thing to look at a person with Down syndrome and call him or her a "retard." So, if there are readily identifiable alternate meanings, what is the reason for censorship?

Differing usages also give rise to reclaiming -- when words that have an offensive meaning are deliberately given a new spin. The putative slur is captured, repurposed and owned by the target of insult. We see this when an African American uses the N-word as a term of identification for his friends, or when the word "queer" is reclaimed for TV shows such as "Queer Eye for the Straight Guy" and "Queer as Folk," and for queer studies and queer theory in university courses. Reclaiming the word "retard" is an option that should involve no risk to freedom of expression.

If interest groups want to pour resources into cleaning up unintentional insults, more power to them; we surely would benefit from greater kindness to one another. But we must not let "retard" go without a requiem. If the goal is to protect intellectually disabled individuals from put-downs and prejudice, it won't succeed. New words of insult will replace old ones.

Words are ideas, and we should be reluctant to surrender any of them. Freedom of expression has come at a dear price, and it is not worth abridging, even so we can get along a little better. That's one F-word we really can't do without.

Christopher M. Fairman is a professor at the Moritz College of Law at Ohio State University. He is the author of a book subtitled "Word Taboo and Protecting Our First Amendment Liberties," whose title is unprintable here. Fairman will be online to chat with readers on Tuesday, Feb. 16, at 11 a.m. ET. Submit your questions and comments before or during the discussion.
Alcohol Tax Legislation Named for Champion of Disability Rights

Alcohol Tax Legislation Named for Tireless Champion of Disability Rights

The Lorraine Sheehan Health and Community Services Act of 2010, House Bill 832, was introduced by Montgomery County Delegate Bill Bronrott and had its first reading in the Maryland House of Delegates Ways & Means Committee, announced the Maryland Developmental Disabilities Coalition.

The legislation was named to honor former Maryland House of Delegates’ member Lorraine Sheehan who died in 2009. Elected to the House of Delegates in 1974, 1978, and 1982, Ms. Sheehan also served as Maryland Secretary of State from 1983 to 1987. She was inducted into the Maryland Women's Hall of Fame in 2002.

Rejecting medical advice to institutionalize her son who was diagnosed with autism and intellectual disabilities, Ms. Sheehan dedicated her life to improving the quality of living and expanding residential opportunities for individuals with developmental disabilities.

Ms. Sheehan he was president of The Arc of the United States, a national advocacy organization serving children and adults with intellectual and developmental disabilities. She also held Arc's Maryland State and Anne Arundel County presidencies.

"Her keen sense of political strategy combined with fierce determination and unwavering tenacity made her a role model and mentor for hundreds of people with disabilities and their families," said The Arc of Maryland director Cristine Marchand. "Thousands more have benefited from her advocacy at the state, local and national levels. Lorraine’s gift was bringing people together for a common justice cause – and this Act that brings together multiple organizations and coalitions around the cause of health care and dignified lives for people with disabilities is aptly named in her honor.

The Lorraine Sheehan Health and Community Services Act of 2010 will increase alcohol taxes by a dime per drink in the state of Maryland and raise $214 million in new revenues. The new revenues would be divided as follows:

®      15% to Development Disability Support Fund, § 7-207 of the Health – General Article

®      15% to the Addiction Treatment and Prevention Fund, § 8-207 of the Health – General Article

®      15% to the Mental Health Care Fund, § 10-209 of the Health – General Article

®      42.25% to the Maryland Medicaid Trust Fund, § 15-103.6 of the Health – General Article, to fund health care coverage for childless adults

The Act will save $249 million in healthcare costs, avert 15,000 cases of alcohol abuse, 316 assaults, 67 incidents of severe violence against children, and 37 premature deaths every year. It will create and preserve jobs in crucial sectors of healthcare and other state services and reduce drinking among young people and heavy drinkers.

The companion bill, Senate Bill 717, sponsored by Senators Jones, Madaleno, Exum, Forehand, Frosh, Lenett, Pinsky, and Raskin was first heard in the Maryland Senate Budget and Taxation Committee.

The 41 House of Delegates co-sponsors are: Delegates Bronrott, Hubbard, Ali, Anderson, Barnes, Benson, Bobo, Burns, Carr, Carter, Dumais, Feldman, Frick, Frush, Gaines, Gilchrist, Gutierrez, Guzzone, Hucker, Ivey, Kramer, Kullen, Lee, Levi, Manno, McIntosh, Mizeur, Montgomery, Nathan-Pulliam, Pena-Melnyk, Ramirez, Reznik, Robinson, Rosenberg, Ross, Simmons, Stukes, Tarrant, Taylor, Valderrama, and Waldstreicher

A coalition that supports the Lorraine Sheehan Act of 2010 includes:

®      AARP Maryland

®      The Arc of Maryland

®      Community Behavioral Health Association of Maryland

®      Cross Disability Rights Coalition

®      Health Care for the Homeless

®      Maryland Addictions Directors Council

®      Maryland Association of Community Services

®      Maryland Citizens’ Health Initiative (and their 1200 organizational endorsers)

®      Maryland Developmental Disabilities Council

®      Maryland Disability Law Center

®      Mental Health Association of Maryland

®      Mothers Against Drunk Driving

®      National Alliance on Mental Illness of Maryland

®      National Association of Social Workers – Maryland Chapter

®      National Council on Alcoholism and Drug Dependence – Maryland Affiliate

®      People On the Go of Maryland

Link to legislation:


For more information on the Lorraine Sheehan Health and Community Services Act of 2010 , contact Laura Howell, MD Developmental Disabilities Coalition 410-740-5125; Nancy Rosen-Cohen, NCADD-Maryland 410-625-6482; Linda Raines, Maryland Mental Health Coalition 410-235-1178; or Vinny DeMarco, Health Care for All 866-433-8451.

Your Mother Was Right: Think Before You Speak

Your mother was right: Think before you speak - McClatchy Newspapers
Published Friday, Feb. 12, 2010

The phrases are disrespectful, demeaning and, frankly, unimaginative.

But they're annoyingly ubiquitous.

And that was even before The Wall Street Journal provided Sarah Palin a nugget with which to make political hay.

"That's just retarded" and "That's so gay" have become all-purpose put-downs, used in contexts that have nothing to do with cognitively challenged or homosexual individuals.

But just because words and phrases gain currency in the language doesn't make them valuable or essential to discourse.

The problem is, how do you eradicate hurtful expressions from common overuse?

The Journal wasn't actually calling out White House Chief of Staff Rahm Emanuel on his language in a late January story about liberal groups' frustration with the Obama administration.

The story reported that Emanuel, whose foul mouth has been well-chronicled, called it "f---ing retarded" for the interest groups to run ads attacking conservative Democrats whose votes would be needed on health-care legislation.

Palin pounced via Facebook, chastising Emanuel for a "slur on all God's children with cognitive and developmental disabilities - and the people who love them." She didn't take specific issue with his f-bomb, though. Curious, that.

Why did the former Alaska governor's reaction look only partly sincere? Because she then called it acceptable satire for Rush Limbaugh to huff that it's no insult to call "a bunch of people who are retards, retards."

Not that he was defending Emanuel, mind you; Limbaugh used the slur to show his contempt for those liberal groups whose politics he despises.

Seeing its own opportunity, Sen. Kay Bailey Hutchison's campaign followed by telling CNN that Palin buddy Gov. Rick Perry had his own r-word issues:

CNN had Hutchison campaign manager saying that in a phone call Perry consultant David Carney had called it "just retarded" and "the most retarded thing I've ever heard" for the Republican gubernatorial candidates to wait for their Jan. 14 debate in a building separate from where they'd be speaking.

In these contexts, the r-word seems to mean moronic. But troll the online Urban Dictionary, and the many definitions offered include just the opposite of stupid. Such is slang.

You can also find debates over whether in an earlier r-word version of the Black Eye Peas hit "Let's Get it Started" the word meant to get crazy dancing or drunk or just slow things down.

Words and their meanings evolve, sometimes in good ways and sometimes in bad.

Words fall into and out of favor.

Sometimes the language changes with the times for perfectly good reasons. (Nothing wrong with "firefighter" instead of "fireman" when the job's no longer gender-restricted.)
Sometimes revisions made in good faith just sound silly or perverse. (Domestic engineer, anyone?)

But whether bigotry, nastiness, vulgarity or meanness become more entrenched or acceptable - and how we prevent that - is more complicated.

It's taken decades and protests and public education and media awareness and shifting generations to purge some of the ugliest of English words from widespread American usage. Yet some persist in private conversation and public confrontations when small minds resort to malicious insults.

At the same time, profanity has coarsened our culture and our everyday lives.

The Federal Communications Commission doesn't much like the f-word in any of its iterations. Nor do I. But think of how many people drop it - or the b-word that rhymes with "witch" - for everything from a threat to a challenge to an epithet, even to an unthinking placeholder like "you know."

Offensive as that is, though, it's not equivalent to an affront toward an entire group of people who have done nothing more than be an easy target for denigration.

How to eradicate offensive speech?

With more speech that asks people to think about what they're saying.

It's ironic that the Palin-Emanuel brouhaha has called attention to the Special Olympics' year-old campaign to raise awareness about "the dehumanizing and hurtful effects" of the r-word.

March 3 is the second "Spread the Word to End the Word" awareness day.

Maybe the organizers could get a plug from President Barack Obama, who on "The Tonight Show" a year ago tactlessly compared his pathetic bowling skills to "like Special Olympics, or something."

It's not political correctness to say that some language is just too rude. That's common courtesy.


Linda P. Campbell is a columnist and editorial writer for the Fort Worth Star-Telegram. Readers may write to her at 400 W. 7th Street, Fort Worth, Texas 76102, or via e-mail at lcampbell@star-telegram.com.

Changes Proposed in How Psychiatrists Diagnose

Changes Proposed in How Psychiatrists Diagnose
By LAURAN NEERGAARD (AP) – 1 day ago

WASHINGTON — Don't say "mental retardation" — the new term is "intellectual disability." No more diagnoses of Asperger's syndrome — call it a mild version of autism instead. And while "behavioral addictions" will be new to doctors' dictionaries, "Internet addiction" didn't make the cut.

The American Psychiatric Association is proposing major changes Wednesday to its diagnostic bible, the manual that doctors, insurers and scientists use in deciding what's officially a mental disorder and what symptoms to treat. In a new twist, it is seeking feedback via the Internet from both psychiatrists and the general public about whether the changes will be helpful before finalizing them.

The manual suggests some new diagnoses. Gambling so far is the lone identified behavioral addiction, but in the new category of learning disabilities are problems with both reading and math. Also new is binge eating, distinct from bulimia because the binge eaters don't purge.

Sure to generate debate, the draft also proposes diagnosing people as being at high risk of developing some serious mental disorders — such as dementia or schizophrenia — based on early symptoms, even though there's no way to know who will worsen into full-blown illness. It's a category the psychiatrist group's own leaders say must be used with caution, as scientists don't yet have treatments to lower that risk but also don't want to miss people on the cusp of needing care.

Another change: The draft sets scales to estimate both adults and teens most at risk of suicide, stressing that suicide occurs with numerous mental illnesses, not just depression.

But overall the manual's biggest changes eliminate diagnoses that it contends are essentially subtypes of broader illnesses — and urge doctors to concentrate more on the severity of their patients' symptoms. Thus the draft sets "autism spectrum disorders" as the diagnosis that encompasses a full range of autistic brain conditions — from mild social impairment to more severe autism's lack of eye contact, repetitive behavior and poor communication — instead of differentiating between the terms autism, Asperger's or "pervasive developmental disorder" as doctors do today.

The psychiatric group expects that overarching change could actually lower the numbers of people thought to suffer from mental disorders.

"Is someone really a patient, or just meets some criteria like trouble sleeping?" APA President Dr. Alan Schatzberg, a Stanford University psychiatry professor, told The Associated Press. "It's really important for us as a field to try not to overdiagnose."

Psychiatry has been accused of overdiagnosis in recent years as prescriptions for antidepressants, stimulants and other medications have soared. So the update of this manual called the DSM-5 — the Diagnostic and Statistical Manual of Mental Disorders, fifth edition — has been anxiously awaited. It's the first update since 1994, and brain research during that time period has soared. That work is key to give scientists new insight into mental disorders with underlying causes that often are a mystery and that cannot be diagnosed with, say, a blood test or X-ray.

"The field is still trying to organize valid diagnostic categories. It's honest to re-look at what the science says and doesn't say periodically," said Ken Duckworth, medical director for the National Alliance for the Mentally Ill, which was gearing up to evaluate the draft.

The draft manual, posted at http://www.DSM5.org, is up for public debate through April, and it's expected to be lively. Among the autism community especially, terminology is considered key to describing a set of poorly understood conditions. People with Asperger's syndrome, for instance, tend to function poorly socially but be high-achieving academically and verbally, while verbal problems are often a feature of other forms of autism.

"It's really important to recognize that diagnostic labels very much can be a part of one's identity," said Geri Dawson of the advocacy group Autism Speaks, which plans to take no stand on the autism revisions. "People will have an emotional reaction to this."

Liane Holliday Willey, an author of books about Asperger's who also has the condition, said in an e-mail that school autism services often are geared to help lower-functioning children.

"I cannot fathom how anyone could even imagine they are one and the same," she wrote. "If I had put my daughter who has a high IQ and solid verbal skills in the autism program, her self-esteem, intelligence and academic progress would have shut down."

Terminology also reflects cultural sensitivities. Most patient-advocacy groups already have adopted the term "intellectual disability" in place of "mental retardation." Just this month, the White House chief of staff, Rahm Emanuel, drew criticism from former GOP vice presidential nominee Sarah Palin and others for using the word "retarded" to describe some activists whose tactics he questioned. He later apologized.

AP Medical Writer Lindsey Tanner in Chicago contributed to this report.
Copyright © 2010 The Associated Press. All rights reserved.

Disorder Out of Chaos

Disorder Out of Chaos
By ROY RICHARD GRINKER, Op-Ed Contributor, The New York Times

February 10, 2010 - Washington

If you ask my daughter, Isabel, what autism means to her, she won’t say that it is a condition marked by impaired social communication and repetitive behaviors. She will say that her autism makes her a good artist, helps her to relate to animals and gives her perfect pitch.

The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.

Many people with milder symptoms of autism have, for the past 20 years or so, received a diagnosis of Asperger’s disorder. Some autistic adults call themselves “Aspies” to celebrate their talents and differences. And many parents have embraced the label because they have found it less stigmatizing, and so it has eased their sense of loss.

This may soon change, however. The American Psychiatric Association, with its release this week of proposed revisions to its authoritative Diagnostic and Statistical Manual of Mental Disorders, is recommending that Asperger’s be dropped. If this revision is adopted, the condition will be folded into the category of “autism spectrum disorder,” which will no longer contain any categories for distinct subtypes of autism like Asperger’s and “pervasive developmental disorder not otherwise specified” (a category for children with some traits of autism but not enough to warrant a diagnosis).

The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.

When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.

It’s no longer a secret that people with autism can have careers and meaningful social relationships. Witness the spate of recent movies, from HBO’s “Temple Grandin,” about a woman with autism who became an animal scientist famed for her designs of humane slaughterhouses, to “Mary and Max,” an animated feature about a friendship between a 44-year-old man with Asperger’s and an 8-year-old girl.

But a culturally meaningful distinction isn’t always a scientifically valid one. Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. Indeed, in the current diagnostic manual, a child who has good language acquisition and intelligence qualifies as autistic if, in addition to having restricted interests and problems with social interactions, he has just one of the following symptoms, which are common among children with Asperger’s: difficulty conversing, an inability to engage in make-believe play or repetitive or unusual use of language. Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

Moreover, large epidemiological studies have demonstrated that mild symptoms of autism are common in the general population. In particular, scientists have found that family members of a child with autism often exhibit isolated autistic traits. With autism, as with many medical diagnoses — like hypertension and obesity — the boundary lines are drawn as much by culture as by nature. Dividing up the workings of the mind is not as neat and orderly as categorizing species.

The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with autism. When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time.

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

Roy Richard Grinker, a professor of anthropology at George Washington University, is the author of “Unstrange Minds: Remapping the World of Autism.”

iPhone App Opens World to Boy with Rare Syndrome
For the first seven years of his life, Andrew struggled to tell his mother, Beth Patitucci, when he was hungry or when he wanted to sit on her lap. On an almost daily basis, his family and teachers at school would see Andrew cry, bite on his thumbs and lash out as if in pain. But he was unable to let them know what was wrong.

Andrew, who at age 8 is the size of a 3- or 4-year-old, has Cornelia de Lange syndrome, a developmental disorder that affects communication and social interaction. It is characterized by low birth weight, slow growth, distinctive facial features and small stature.

But a new iPhone application Andrew uses on an iPod has opened the doors to Andrew's mind.

Proloquo2go, the best-selling medical and educational app of 2009, has created a lot of enthusiasm among speech language pathologists, parents and people struggling to communicate. For some, like Beth and Andrew Patitucci, of Dresher, Pa., the app has provided a pocket-sized alternative to bulkier communication devices at a fraction of the cost.

"This was something that was affordable enough for us that we figured we'd give it a try," Beth said. "And if it didn't work out, we knew at least we'd end up with an iPod out of it."

Typically, Augmentative and Alternative Communication (AAC) devices with similar capabilities cost between $5,000 and $8,000. Proloquo2go is available online in the App Store for $189.99. Packaged with an iPod or iPhone and other accessories, the total cost is usually between $500 and $600.

The device is relatively simple to program, said Samuel Sennott, the 31-year-old co-creator of Proloquo2go and a doctoral student at Penn State University. Users press on icons, words, and phrases to create messages. Those messages are read aloud by the Proloquo2go software.

Users typically have communications disabilities related to Down syndrome, autism, early-stage ALS, apraxia, aphasia and strokes, Sennott said.

The app has also allowed certain users to bypass the bureaucratic channels necessary to receive more expensive devices. In many cases, insurance companies will only cover one AAC device every five years, and the process of getting funding for those devices can take months.

"The fact that users can get it commercially by going to Best Buy, Wal-Mart, Apple retail stores or any other electronics store is a dream come true for me," said Sennott, who's been working with children in special education since he was 19.

Read the rest of the article at abcnews.com

LaPointe Deserves A New Trial

LaPointe Deserves A New Trial

Rick Green, Courant.com
February 9, 2010

One of the nation's most notorious examples of alleged wrongful conviction will soon return to center stage, perhaps finally providing an answer to a disturbing question.

Could convicted killer Richard LaPointe really have raped and murdered Bernice Martin?

Perhaps LaPointe's last shot at freedom will come in a Rockville courtroom this May, when a judge will consider evidence that his supporters say proves he deserves a new trial.

The May hearing could lead to freedom for the mentally disabled man who was found guilty in 1992 of the rape and murder in Manchester of Martin, his wife's 88-year-old grandmother.

The result will say plenty about justice in Connecticut. There has been no willingness by authorities to re-examine the questionable circumstances surrounding LaPointe's conviction.

The questions begin with the blind acceptance of a confession from a man with an I.Q. of 80 and extend to the exclusion of critical evidence and the incompetence of LaPointe's previous lawyers.

The evidence against LaPointe, now 64, in the 1987 crime is impressive — three confessions and a failure by his supporters to prove, despite repeated attempts, LaPointe's innocence.

But now, because of a state Appellate Court ruling last year, which overturned a lower court's ruling dismissing LaPointe's bid for a new trial, a Superior Court judge will review whether critical exculpatory evidence — an expert's analysis of the "burn time" of the fire that was set by the killer to cover up the murder — was not disclosed by the state.

"The state suppressed evidence. [LaPointe's] lawyers were ineffective. They didn't make use of the evidence that shows he didn't commit the crime," said Paul Casteliero, a lawyer for LaPointe. "The jury should have been aware of that."

"It is mind-boggling to me. The state never fixes a time when this whole thing happened."

Casteliero says that the evidence, in the form of notes from an arson investigator, doesn't fit the state's scenario for the murder on the evening of March 7, 1987. He said the notes suggest that the fire that Martin's killer set after the murder had burned too long for LaPointe to have quickly assaulted and murdered Martin and then calmly returned to his nearby home for an evening of television watching.

Chief State's Attorney Kevin Kane declined to comment about the case because it is a pending matter.

The state Appellate Court, in a ruling last year that represents the first victory for LaPointe in the decades-old case, noted that if the fire had been burning for 30 to 40 minutes — instead of a much shorter period — then a potential, if thin, alibi emerges:

"There was sufficient evidence presented ... to establish the potential exculpatory nature of a burn time estimation because evidence was submitted that, if credited, tenuously would have established an alibi for the window of time created by this burn time estimation."

The state's unwillingness to reconsider is no surprise, said Kate Germond, an investigator and associate director of Centurion Ministries, which works to reverse wrongful convictions.

"They hang on pretty tenaciously to these cases. I think they are used to having their own way. Their impulse is to circle the wagons."

"This case in particular really gnaws at us," said Germond, whose group is actively involved in about 20 cases throughout the country. "Richard is getting older. His life expectancy isn't as long as you and I might enjoy."

A new trial for LaPointe is long overdue.

Because if LaPointe didn't do it, this is more than a case of the system taking advantage of a hapless disabled man.

The real killer may have gotten away with murder.

Copyright © 2010, The Hartford Courant 

The Arc to Rush Limbaugh: Meet with Us

FOR IMMEDIATE RELEASE                              Contact:  Laura Hart, hart@thearc.org
February 5, 2010                                                              202.534.3712; 301.325.5650


February 5, 2010

Mr. Rush Limbaugh
1270 Avenue of the Americas, 9th Fl.
New York, NY 10020

Dear Mr. Limbaugh:

I am writing on behalf of The Arc of the United States (The Arc), the oldest and largest national nonprofit organization that advocates on behalf of and serves people with intellectual and developmental disabilities. With 730+ chapters nationwide, The Arc is committed to the full inclusion and participation of people with disabilities in all aspects of community life.

Earlier this week, on behalf of The Arc, I participated in a frank discussion with White House Chief of Staff, Rahm Emanuel, regarding comments he made that offended our constituency. On the same day, you engaged in extensive commentary about that meeting, as well as the events surrounding it, using the same offensive language.

I am inviting you to meet personally with a group of individuals with intellectual and developmental disabilities, their parents, and siblings to engage in an open and honest dialogue regarding the language you used in your recent commentary. We would like to provide you the opportunity to hear, first hand, why people with intellectual and developmental disabilities believe the words “retard” and “retarded” and similar phrases need to be removed from common use.

Self-advocates, parents, disability rights activists and others are rightly concerned that your comments simply serve to further degrade and denigrate the 7 million individuals with intellectual and developmental disabilities who struggle on a daily basis to be included in society. We believe that a face to face meeting to discuss these concerns and share the personal impact on these individuals would go far in informing you and your listeners.

I cannot understate the effect of a word many consider an epithet – it is deeply offensive to people that are living with intellectual disabilities, and the tens of millions of their parents, siblings, family members and friends. It is a harsh reminder of the institutionalization, sterilization, abuse, discrimination, violence and exclusion they have faced, and continue to face, as they merely seek to live typical lives.

I invite you to meet with a group of people with intellectual disabilities and their families in a city of your choosing – New York, Washington, DC, or another location. I look forward to a favorable reply.


Peter V. Berns
Chief Executive Officer

The Arc's Jill Egle Leads the Fight on "the r-word"

Mentally disabled people campaigning on their own behalf
By Michael Alison Chandler
Washington Post Staff Writer
Thursday, February 4, 2010; 1:20 PM

A national movement to purge the word "retarded" from lawbooks and medical terminology is nearing success, gaining support this week from White House Chief of Staff Rahm Emanuel, who apologized to advocates for the disabled for using the term during a private meeting last summer.

The campaign is led in part by the mentally disabled themselves, who are increasingly politicized and eager to escape the stigma associated with the term.

"It's a time of change" said Jill Eglé, co-executive director at the Arc of Northern Virginia, a support group for the disabled, who spearheaded a campaign to change the state code in Virginia.

The words "retarded" or "retard" feel threatening, she said. Eglé identifies herself this way: "I am a powerful leader with an intellectual disability."

In Maryland, lawmakers voted last year to replace the term "mental retardation" throughout much of the legal code, and in the District, Virginia and 47 other states, politicians have acted to remove the words from the names of their human services agencies. This spring, Congress plans to consider a bill that would replace the words in all federal education, health and labor laws.

The 2010 professional manual that psychologists use for diagnosis makes the change in the medical label official: "Mental retardation" is out. "Intellectual disability" is in.

The change came after a decade of debate among social workers, psychologists and educators, and was voted down once by those concerned a new term would create confusion and cause some people to lose legal benefits. "It was continued impassioned pleas from self-advocates that made this happen," said Joanna Pierson, president of the American Association on Intellectual and Developmental Disabilities, formerly the American Association of Mental Retardation.

The shift in language casts the word "retarded" into a bin with more than a century's worth of discarded medical terms for the mentally disabled, including "idiot," "moron" and "feebleminded." The terminology provides an important function by connecting people to services such as special education and job assistance.

"A challenge in our field historically has been that whatever medical term we have used, a significant portion of the public uses it in a derogatory fashion," said Paul Marchand, staff director of disability policy collaboration for the Arc of the United States, which changed its name in 1992 from the Association of Retarded Citizens.

Some advocates argue that the long campaign to change the term has been a waste of time, because the lexicon of insults is likely to expand to include any new terms, and because it has distracted from more pressing needs such as employment assistance.
Growing clout

But for a new generation of people with intellectual disabilities, who are better educated and better organized, changing the language is priority number one. And their recent legislative successes are signaling their effectiveness as a political force.

Leadership opportunities have come slowly to people with intellectual disabilities. Campaigns against forced sterilization or institutionalization or exclusion from public schools have been led by family members or the professionals who work with them.

The nature of a disability that's historically been diagnosed for those with IQ test scores below 70 or 75 makes it harder to give speeches or debate issues. But an increasing number of people with intellectual disabilities are taking the microphone and setting up picket lines to stand up for themselves, following examples set by African Americans, women and other groups.

For example, on Martin Luther King Jr. Day in Richmond, a 27-year old man with Down syndrome addressed a crowd of Virginians with intellectual disabilities who had came to lobby their legislators for funding.

"The man we honor today reminded us that the dream of this great nation was not yet fulfilled for all its citizens. . . . He reminded us that America made a promise that all men would be guaranteed the right to life, liberty and the pursuit of happiness. Virginia, we have promises to keep and miles to go before we sleep," John Franklin Stephens said to shouts and applause.

Stephens, an aspiring screenwriter from Fairfax, had written the speech with help from his father and practiced it many times. Many with intellectual disabilities need support from a non-disabled mentor who can explain issues and help strategize. The number of organizations dedicated to training "self-advocates" has more than doubled in the past decade to about 2,000, according to estimates by the Research and Training Center on Community Living at the University of Minnesota.

As institutions have closed and the disabled are increasingly included in regular schools, people with intellectual disabilities are becoming increasingly articulate, self-confidant and ambitious. Some are attending adapted college programs. A small number, like Eglé, are pursuing professional careers with support from mentors, and are not relegated to low-end jobs. Many self-advocates are being invited to sit on commissions or nonprofit boards or to intern in state legislatures.

"Fifteen or 20 years ago, we were directing their lives," said Mary Lou Meccariello, executive director of the Arc of the District of Columbia. "Now they are directing their own lives."

In Maryland, self-advocates were instrumental in getting the Rosewood Center, a century-old institution in Owings Mills, to close last summer. In Minnesota, they waged a campaign to identify and mark thousands of gravestones outside institutions.

Nationally, they have helped escalate protests against R-word references in popular culture, such as the 2008 release of "Tropic Thunder," a movie laced with "retard" punch lines, and Emanuel's recently reported reference to liberals as "retarded."

Local victories

People First in Northern Virginia, a self-advocate group, initiated the campaign to rid the state code of the word in 2007. The original bill would have removed the words from the lawbooks, but the General Assembly did not ultimately pass it, due to concerns that the changes would jeopardize federal funding for people with "mental retardation." In 2009, it passed a less pervasive but still symbolic change, renaming the Department of Mental Health, Mental Retardation and Substance Abuse Services to Department of Behavioral Health and Developmental Services. The Board of Education also approved changes to the language used in public schools.

During a People First meeting in Fairfax last month, members met with a facilitator from Toastmasters, a public speaking and leadership training program. They focused on making eye contact and keeping "umms" and "ahhs" in check during a series of impassioned speeches about the R-word.

"They need to completely erase it out of the ledger and the government books. If I find the R-word in a government document, I would just burn it until there was nothing left. That is how strongly I feel about it," said Robbie Kelly, 35, of Dumfries.

In many places, including Maryland, the change in terminology has been approved quickly. Nina Marcellino, an Anne Arundel mother whose 7-year-old daughter, Rosa, has Down syndrome, was
inspired by the campaign in Virginia and contacted a Maryland legislator in 2008 to sponsor a bill. Less than a year later, it passed unanimously and the term is being removed from education and health codes.

Self-advocates were among the most vocal supporters; Marcellino said. Some wept when it passed.

"It was a change whose time had come," she said.
Emanuel Says He Will Join Effort to Stop Use of 'Retarded'

Emanuel says he will join effort to stop use of 'retarded'

By Michael D. Shear, The Washington Post
Thursday, February 4, 2010; C02

White House Chief of Staff Rahm Emanuel apologized again Wednesday for using the word "retarded" during a private meeting last summer, telling advocates for the disabled that he will join their campaign to help end the use of the word.

The controversy over Emanuel's remark continued to dog the sometimes foul-mouthed senior Obama adviser despite his having privately apologized to Special Olympics Chief Executive Tim Shriver shortly after the comment was made public last week.

In a statement after an afternoon meeting at the White House, Shriver and five other disability rights advocates said Emanuel had "sincerely apologized" for the earlier comment during a strategy meeting, which was reported in the Wall Street Journal.

"We are happy that he will join more than 54,000 other Americans in pledging to end the use of the R-word at www.r-word.org, and that he committed that the administration would continue to look for ways to partner with us, including examining pending legislation in Congress to remove the R-word from federal law," they said in the statement.

An Emanuel aide declined to comment after the meeting.

The Wall Street Journal reported last week that Emanuel used the phrase "[expletive] retarded" during a meeting with liberal activists in August. In a letter to Emanuel on the day the article appeared, Shriver took the chief of staff to task for using a word that is considered insulting.

"I know that private political discourse can sometimes include profanity. But at the same time, our community cannot accept the idea that they will remain the butt of jokes and taunts," Shriver wrote. "I hope you will join us in changing the conversation and eliminating this word from your vocabulary."

Emanuel responded to the letter with a private apology to Shriver, which a White House aide said Tuesday had been accepted. That apology was first noted on an online site called Disability Scoop.

Controversy about Emanuel's use of the word erupted more broadly after former Alaska governor Sarah Palin called on President Obama to fire his chief of staff. In a statement on her Facebook page, she asked: "Are you capable of decency, Rahm Emanuel?"

The meeting at the White House included Shriver; Andrew Imparato, the president and chief executive of the American Association of People with Disabilities; Peter V. Berns, the chief executive of the Arc; and three advocates for disability rights. A spokeswoman for Shriver said Wednesday after the meeting that, "Tim accepted the apology."

The advocacy groups have launched a campaign at http://www.r-word.org to try to end the use of the word, which had until the early 1990s been in common usage. It is now seen as demeaning.

"Every day our community hears this word -- in schools and workplaces, in print and in movies, on radio and television," the statement read.


"And every day they suffer its dehumanizing effects -- mockery, stigma, ridicule. This is a word that is incredibly damaging -- not only to the seven million people with intellectual disabilities in the United States, but also their friends, family and to all of us."


Joint Statement of Disability Leaders
FOR IMMEDIATE RELEASE                                                              Contact:  Laura Hart
February 3, 2010                                                                                  202.534.3712

Joint Statement of Disability Leaders

We came here today to meet with Rahm Emanuel and share with him our view on the importance and impact of language.  We wanted to invite Mr. Emanuel and all of America to understand the collective efforts of our community to remove the words “retard” and “retarded” from everyday speech. 

The R-word is polluting our language.  Every day our community hears this word – in schools and workplaces, in print and in movies, on radio and television.  And every day they suffer its dehumanizing effects – mockery, stigma, ridicule.  This is a word that is incredibly damaging – not only to the seven million people with intellectual disabilities, but also their friends, family and to all of us.

We are thankful to Mr. Emanuel for meeting with us today and hearing our concerns. He sincerely apologized for his mistake and the pain it caused in our community.

We are happy that he will join more than 54,000 other Americans in pledging to end the use of the R-word at www.r-word.org, and that he committed that the administration would continue to look for ways to partner with us, including examining pending legislation in Congress to remove the R-word from federal law.

Our community has earned the right to be respected instead of ridiculed.  We have suffered injustice for generations and we are demanding that it end. 

This is another small step on the road to a country that accepts the gifts of all.

Julie Petty, Ricardo Thornton, Hannah Jacobs, Andy Imparato, Peter Berns, Tim Shriver

The Arc Invited to Meeting at White House on the R-word

The Arc of the United States has been invited to attend a meeting at the White House to discuss the recent controversy surrounding the Chief of Staff's use of the r-word.  Peter V. Berns, Chief Executive Officer, of The Arc will be attending along with other disability advocates and self-advocates, including:  Andy Imparato, American Association of People with Disabilities;  Hannah Jacobs, parent; Julie Petty, self-advocate; Tim Shriver, Special Olympics; and Ricardo Thornton, self-advocate.

The Arc Asks for Apology and for Support of Rosa's Law

The following is the text of a letter emailed to White House Chief of Staff on January 28, 2010:

January 28, 2010

Mr. Rahm Emanuel
Chief of Staff
The White House
1600 Pennsylvania Avenue, NW
Washington, D.C.  20050

Dear Mr. Emanuel:

It was deeply distressing to read news reports of your use of an epithet relating to people with intellectual and developmental disabilities.  Constituents of The Arc of the United States (The Arc), the nation’s oldest and largest organization promoting and protecting the human rights of people with intellectual and developmental disabilities and their families, are justifiably upset by the insensitivity to their struggle revealed by the use of this derogatory language.

This recent verbal miscue echoes President Obama’s unfortunate statement last year, on The Tonight Show with Jay Leno, equating his poor bowling performance with that of people with intellectual disabilities.  As disability rights advocates, we expected more from this Administration and presumed that the appointment of a Special Assistant to the President for Disability Policy was an assurance that the needs and concerns of people with intellectual and developmental disabilities would be understood and solidly represented.

Statements such as these emanating from the highest levels of government only intensify pervading societal attitudes that people with intellectual disabilities somehow don’t measure up—that their lives are worth less. 

The more than seven million Americans with intellectual and developmental disabilities and their families deserve a public apology for words that are the moral equivalent of hate speech.  This language is disrespectful and demeaning and further undermines the struggle for empowerment that this constituency faces on all fronts:  employment, education, housing, and inclusion in every aspect of society.

The Arc of the United States strongly supports legislation (S.2781) introduced by Sen. Barbara Mikulski of Maryland that would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities” in several federal statutes such as education and employment laws.  As advocates for people with intellectual disabilities, we are waging a battle to change hearts and minds and ensure that our constituency enjoys full inclusion and participation in the community.  The Arc hopes that the Obama Administration will offer vigorous support for this legislation, which if enacted will be a step forward in achieving these goals.

Thank you in advance for your consideration; we look forward to hearing from you.


Peter V. Berns
Chief Executive Officer
The Arc of the United States


Erasing Fairview's horrors
The past three decades have brought a sea change in state policy for Oregonians with developmental disabilities. In 1981, more than 1,300 Oregonians with developmental disabilities lived at the Fairview Training Center in Salem, where for decades they were called "inmates." Next month marks the 10th anniversary of the closure of Fairview. With the recent closure of the Eastern Oregon Training Center, Oregon is now the only state that serves 100 percent of its individuals with developmental disabilities in noninstitutional settings.

Our system of community-based supports is not perfect. It remains underfunded, provider wages and training are inadequate, and we must improve client safety in the system. However, Oregonians with disabilities have some things today they didn't have 30 years ago at Fairview: freedom, dignity and a sense of belonging.

Many artifacts and records from Fairview have been lost or destroyed, and just last week Pierce Cottage was destroyed by fire of unknown origin. As the visible reminders of Fairview disappear, we must ensure that its history is not forgotten or sanitized.

Oregon maintained a Board of Social Control that oversaw more than 2,600 forced sterilizations through 1983. Forced hysterectomies, tubal ligations, vasectomies and even castrations were requirements for discharge from Fairview up through the late 1970s. In 2002, then-Gov. John Kitzhaber issued a formal apology for these human rights violations.

Kitzhaber also acknowledged other abuses. "Until the mid-1980s, if you could believe that, the staff of the institutions commonly used inhumane devices to restrain or control patients, including leather cuffs and helmets and straitjackets and inappropriately high dosages of sedatives and psychotropic medications," he said.

Former residents tell stories of discipline with leather cuffs, cow whips, razor straps and isolation cages. An oral history project has worked to capture the stories of those who lived and worked at Fairview in their own words.

"I was handicapped, but it made me sicker to be there. It was like a prison. Handcuff. Shut door," one said. "I didn't like it there. People mean," another said.

One resident described being disciplined with razor strops: "It stings really bad." Others recalled:

"They were strict at Fairview. You got beat up, yelled at. They put us in closets."

"They used their shoes to spank us also."

"If you don't behave yourself, they'd get you with the scalding hot water."

One graduate student assigned to work at Fairview in 1980 described residents being handcuffed to 60-pound blocks and forced to push them up and down the hall. A study published in The American Journal of Forensic Medicine and Pathology found that between 1963 and 1987, Fairview residents were more than twice as likely to die from unnatural causes as noninstitutionalized people in Marion County.

When the U.S. Department of Justice and the Health Care Financing Administration came to investigate allegations of abuse in the late 1980s, they were appalled. The agencies immediately decertified the facility and temporarily withdrew federal funding. During the next decade, under pressure from advocates and the federal government, the state developed a long-term plan for Fairview's closure. At 1:15 p.m. on Feb. 24, 2000, the last resident left Fairview to begin his life in the community.

The proceeds from the property sale were put into the Fairview Housing Trust. Since 2003, the trust has awarded grants to more than a thousand people with disabilities for crucial home modifications that make community living possible. Preservation of this fund is a living memorial to the thousands of Oregonians with disabilities who suffered at Fairview. The trust is also a commitment to future generations that their future lies in the community.

Oregon can be proud to be the first state in the nation to have fully transformed its developmentally disabled system into one that affirms equality and human dignity. In other parts of the country, advocates still raise alarms about the conditions that persist for thousands of children and adults living in their state institutions. Many of those states look to Oregon for advice about how to improve their service systems. We must continue our efforts to improve Oregon's developmental disability service system, and must never forget the abuses of the past. However, with the 10th anniversary of Fairview's closure, we should take a moment to celebrate our progress.

Today, Oregonians with developmental disabilities are no longer deemed "inmates" of an institution.

Instead, they are neighbors and friends.

That is progress.
To see a video of life at the institution and interviews with former residents: http://ocdd.org/index.php/ocdd/trainings/274
Sara Gelser, a Corvallis Democrat, is assistant majority leader of the Oregon House of Representatives.
Neglect of man with Down syndrome subject of probe

The Pueblo Chieftan - By Nick Bonham

Agency that assumed custody of the victim critical of investigative agencies' slow responses.

The possible abuse and neglect of a 46-year-old man with Down syndrome is being investigated after he was found to weigh only 60 pounds discovered to be suffering from severe bed sores and a broken femur.

The Pueblo County Sheriff's Office is now investigating the case concerning Karl Martinez, who has been recovering in a local hospital since November.

The ARC of Pueblo was granted emergency guardianship at the time and is now Martinez's legal guardian.

"He was withdrawn, was so malnourished and the bed sores were horrific," said Stephanie Garcia, executive director of the ARC. "I'm happy to report he's gained 20 pounds."

Martinez had been living with a relative on Pueblo's East Side when neighbors reported suspicious activity at the home on Nov. 5.   Neighbors called 911 after they saw Martinez's relative carrying "what appeared to be a limp body to a vehicle," according to court documents obtained by The Pueblo Chieftain.

The body was first believed to be a dead dog, Garcia said, but was actually Martinez. Sheriff's deputies didn't respond because they were on other calls, the document said.

The court documents included a letter by Dr. Constance Wehling, who treated Martinez.

"This is truthfully the most severe case of neglect that I have encountered in 30 years of my medical practice, and I would encourage the legal system of this county to take an active role in giving him respect of life," Wehling wrote.

While Martinez is improving, Garcia said she's disappointed with the lack of progress in the case.

"I am disappointed, and I think what triggered my anger was the horrible reports of the animal abuse up north and how quickly people were brought to justice, and I just want that for Karl. I want Karl's offenders brought to justice," she said.

Garcia was referring to the recent incident in Park County, where 100 sled dogs were allegedly abused and malnourished and their owners arrested and charged.

Sheriff Kirk Taylor said investigative efforts had been dedicated to the December robbery-homicide of Robert Piserchio, which has netted arrests of seven suspects in Colorado Springs.

More resources have recently been dedicated to Martinez's case.

"The detective working with this has been tied up on the homicide," Taylor said in a recent interview. "No. 1: the stronger (Martinez) gets, the better witness he's going to be. He was only able to answer 'yes' or 'no' to questions."

"Carl's been saying the same thing from day one," about his alleged abuse, Garcia said. "And I told Kirk (that) Karl's voice is not being heard. As long as I'm around I'm going to jump up and down and scream until Karl's being paid attention to."

The Pueblo County Department of Social Services has had contact with Martinez dating back to at least 2007. Garcia said DSS knew of abuse against Martinez in 2007 after he collapsed at his home and was hospitalized for malnourishment.

Jose Mondragon, DSS director, said in a recent interview he couldn't talk about the case due to client confidentiality.

"(DSS) had gone out four times before because the neighbors were called and had reported concerns of Karl's well-being," Garcia said.

Taylor said DSS has not been cooperative or forthcoming with the investigation.

Capt. John McClure of the investigation unit at the sheriff's office  said the district attorney's office had reviewed the case and is awaiting more medical information before reaching a conclusion on whether charges will be filed.

"The DA has reviewed the case, and they need more specifics," McClure said.

Men with disabilities didn't work for Henry's, company says
Des Moines Register

Henry's Turkey Service is denying allegations that it employed the mentally retarded men who lived in an Atalissa bunkhouse for most of the past 35 years.

The company filed court papers last week arguing that the Atalissa men "were all employees of West Liberty Foods while working at the West Liberty plant."

Henry's Turkey Service, a Texas labor broker, sent hundreds of mentally retarded men to labor camps scattered throughout the United States in the 1970s and 1980s. One of those labor camps was in Atalissa, where Henry's placed at least 65 men in a bunkhouse rented from the city.

The men worked at the West Liberty turkey-processing plant. Henry's kept most of the men's wages as compensation for room, board and care, which meant the men's net wages often averaged 41 cents an hour. The bunkhouse was shut down 11 months ago, with state officials citing fire-safety concerns.

In November, the U.S. Department of Labor sued Henry's Turkey Service; an affiliate, Hill Country Farms; and one of the companies' two owners, Kenneth Henry. The department alleges violations of the Fair Labor Standards Act and seeks back wages for 37 workers plus interest and damages.

The attorney for the defendants, David Scieszinski, did not return calls to his office this week.

Henry's also claims in its response to the lawsuit that the Atalissa workers were "residents of the state of Texas" even though they lived and worked in Iowa for decades. In its court filing, the company did not make clear why residency was a relevant issue.

The company's claims about employment aren't consistent with other federal and state records.

The workers' W-2 forms, obtained by The Des Moines Register last year, list each man's employer as "Hill Country Farms." Each Atalissa worker's address is the same on all of the W-2 forms: Route 3, Box 240 in Goldthwaite, Texas - the home of Jane Ann Johnson, co-owner of Henry's Turkey Service.

In addition, Johnson wrote to Iowa Workforce Development last year and stated that Henry's and Hill Country Farms - not West Liberty Foods - was providing the legally required unemployment insurance for "our employees at Atalissa."

And in 2003, after the U.S. Department of Labor found that some of the men were owed back wages, it fell to Henry's - not West Liberty Foods - to pay the back wages.

In their response to the lawsuit, the defendants are also taking the position that they "provided no rehabilitative services" to the Atalissa workers. That claim is likely to raise questions as to why Henry's routinely deducted substantial sums of money from each worker's paycheck for what it called "kind care."

For example, bunkhouse resident Keith Brown worked 149 hours in February 2008, earning $1,124 at the plant. Henry's deducted from Brown's pay $487 for room and board, plus $572 for kind care. That left Brown with $65 in earnings for the month.

If the bunkhouse residents needed rehabilitative services that weren't being provided, that could also lead to allegations of dependent-adult abuse, which is a crime in Iowa.

It's also a crime to house more than three dependent adults in an unlicensed group setting. The bunkhouse was never licensed by the state, and after it was closed the state determined 21 of the residents were dependent adults.

Typically, it falls to county prosecutors to enforce Iowa's dependent-adult abuse law and the state law that deals with unlicensed group homes. Muscatine County prosecutors have not filed any criminal charges against Henry's or its owners, saying they want to wait until all other agencies have completed their investigations.

The Department of Labor, Iowa Division of Criminal Investigation and Iowa Department of Inspections and Appeals completed their investigations last year, but the Equal Employment Opportunity Commission and Social Security Administration have not disclosed the status of their investigations.
The Arc condemns White House Aide's Use of R-Word
FOR IMMEDIATE RELEASE                                                Contact: Laura Hart
January 27, 2010                                                                             202.534.3712


Washington, DC – Reports that White House Chief of Staff Rahm Emanuel used an epithet relating to people with intellectual and developmental disabilities is both shocking and disappointing.  

According to a Wall Street Journal story on an embattled White House, “Some attendees said they were planning to air ads attacking conservative Democrats who were balking at Mr. Obama’s health-care overhaul.  ‘F—ing retarded,’ Mr. Emanuel scolded the group, according to several participants.”  We hope that the Members of Congress in that meeting were equally offended.  

This is the second serious verbal miscue by the Administration about people with intellectual and developmental disabilities.  President Obama’s unfortunate statement last year on The Tonight Show with Jay Leno, equating his poor bowling performance with that of people with intellectual disabilities, sparked justifiable outrage from people with intellectual and developmental disabilities and their families.  The President subsequently apologized for his remarks and disabilities advocates saw it as a teachable moment.  Mr. Emanuel’s use of hateful language would suggest that it is the White House staff that needs to be taught a lesson in respect for people with disabilities.

Statements such as these - particularly when used by someone at high level—amplifies pervasive societal attitudes that people with intellectual and developmental disabilities somehow don’t measure up - that their lives are worth less.  “Using a slur about people with intellectual disabilities to criticize other people just isn’t right,” said Peter V. Berns, chief executive officer of The Arc of the United States.  “For people with disabilities it is disrespectful and demeaning and only serves to marginalize a constituency that already struggles for empowerment on every front,” Berns added.

Disability rights advocates had high hopes for this Administration when the President appointed a Special Assistant to the President for Disability Policy.  This was a move that the Administration called:  “our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration.”  

The more than seven million individuals with intellectual and developmental disabilities and their families demand an apology for Mr. Emanuel’s use of language that denigrates our constituency.  The White House needs to lead by example and demonstrate through words and actions that it is not acceptable to use people with disabilities as a source for ridicule. To condone this language is to deny opportunities for people with disabilities in the workplace, in the community, in school, and in every other quarter of society.

The Arc of the United States strongly supports legislation (S.2781) introduced by Sen. Barbara Mikulski of Maryland that would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities.”  Given the two White House incidents of inappropriate use of the term regarding these constituencies, The Arc hopes that the Obama Administration will put its full force behind the enactment of this legislation.

The Arc of the United States promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetime.

Girls with Disabilities Have Audiences Cheering

January 27, 2010
Owning the Stage: Outlaws have audiences cheering
Susan Gray
Northeast Ledger correspondent
– clarionledger.com

Sporting black skirts and sleeveless tops, the little cheerleaders strutted out in front of the audience at the Jackson Convention Complex.

"They pranced out there like they owned the stage," said Debbie Hartung, a proud parent, after the Outlaw Treasures' first performance late last year. "They were not scared at all."

Hartung's daughter, Savannah is a 9-year-old with Down syndrome. She is one of seven children with disabilities, ages 5-11, in the newly created cheerleading squad called Outlaw Treasures at Mississippi Cheerleading Academy in Flowood.

Debbie Hartung, of Flowood, fondly remembers Savannah at the top of a cheerleader pyramid, smiling and blowing kisses. Debbie also remembers the tears that were streaming down her face and her hands shaking so much she barely could hold the video camera.

"Oh my God! That's my baby up there, and she's doing it," she remembers thinking.

At first, a new parent of a child with disabilities grieves for the life experiences that child will not have, Debbie Hartung said. But her daughter's first performance gave her the feeling that, "Everything is OK."

Credit a newcomer who had no doubts.

Katie Hardy, a Memphis native, grew up with children with disabilities through her mother's work. After graduating from Delta State University in 2008, Hardy moved to Madison and became a cheerleading coach and tumbling instructor at the academy, where they train kids ages 3-19.

It's also home to the Outlaws.

She held a camp last summer and in September, the dream of several parents and little girls was realized.

"I knew they were perfectly capable of doing things that a non-disabled child would be able to do," said Hardy.

With some modifications, the routines basically are composed from elements of any competitive routine, Hardy said. The kids perform 2 1/2 minutes of tumbles, stunts, lifts in the air, jumps, cheers and lots of dancing.

"They love to dance," Hardy said. "They just come alive when the music comes on."

Hardy calls the girls a blessing. She loves to see their big hearts. And they have talent.

"It's a talent most people wouldn't realize that they would have," she said.

The Outlaw Treasures have their routine down pat, but it takes work. Practice is held twice a month for an hour, with Hardy getting a hand from veteran Outlaw cheerleaders and other coaches.

Anna Claire Kelly, a freshman at Rosa Scott High School in Madison, is a senior Outlaw squad member. She agrees that these children are capable. They just need "a little extra support," she said.

"Most of them know it by heart," Kelly said. "They know exactly where they are supposed to be."

Kelly spots the girls when they do stunts, making sure they don't fall, and she points them in the right direction if they need the help.

"They are so sweet," she said. "It is so fulfilling to see how happy cheering makes them. It's a great way to make a difference in someone else's life."

The Outlaw Treasures have performed three times, all in Jackson. On Saturday, they perform at the Tunica Convention Center.

So far, each of Savannah Hartung's performances have left her mother in tears.

"I cry every time I watch her," Debbie Hartung said. "It's a dream come true."

Savannah now does one more thing like her sister Sylvia, 12, also a member of the Outlaws.

"I try not to limit her by my fears," Debbie Hartung said. "I try not to ever say she can't until she tries, and then I usually find that she can."

That's pretty close to the advice given by The Arc of Mississippi, an advocacy organization for people of all ages with cognitive, intellectual and developmental disabilities and their families.

"Don't assume that because there is a disability that someone is not going to do certain things in life," said Cindy Dittus, associate director of The Arc and parent of a 31-year-old with Down syndrome. "Have high expectations.

"Allow a person the assumption of competence.

"Don't limit what you think they can do. They will surprise you."

Dittus travels across the state training and teaching disability awareness. Her bottom line: Look for their abilities, not their disabilities.

The Outlaw Treasures is a perfect example. It not only shows everyone else what these children can do, but it helps the girls in a significant way.

"It brings up their self-esteem and gives them a better self image," said Dittus. "It portrays a positive aspect of kids with disabilities."

Last year Savannah did tap and ballet, and has been in gymnastics about four years. Now, she's cheering.

"I have taken her to everything that her sister did, and every organization has found a way to make it happen," Debbie Hartung said.

"Being a cheerleader, for a little girl, is like being a princess. For her to get to do that, she has the opportunity to live her little dream like everybody else."

According to Hardy, the Outlaw Treasures is the only "unique needs" cheerleading squad in the Jackson Metro area but the second in the state.

The other is in Hattiesburg. For more information about the Mississippi Cheerleading Academy, the Outlaws or Outlaw Treasures cheerleading squads, call (601) 664-7077 or go online to www.mississippicheeracademy.com.

For information about The Arc of Mississippi, call (601) 982-1180 or go online to www.arcms.org.

Wisconsin Bill targets use of 'seclusion and restraint' in schools
The Journal Times.com

MADISON - A Racine mother's story about her autistic son's experience being restrained at school caught the attention of Congress last year. It was one of many stories detailing the improper use of restraints with students in schools across the country.

Now, state disability rights advocates are hopeful their effort to pass a law to reduce the use of seclusion and restraint in Wisconsin schools will gain some traction in Madison.

A bill introduced Monday in the state Legislature would restrict the use of restraint and seclusion in schools. Examples of these include physically restraining children or locking them in rooms. Critics charge that these techniques are often used improperly.

After a decade with no success, members of Disability Rights Wisconsin hope their effort has enough momentum this time around.

Wisconsin's current guidelines regarding seclusion and restraints are inadequate, according to Jeff Spitzer-Resnick, managing attorney for Disability Rights Wisconsin, which helped write the bill introduced Monday.

A growing list of states are putting laws on the books intended to reduce the use of seclusion and restraints with students, which can often have dangerous consequences, Spitzer-Resnick said.

The bill introduced in both houses of the Legislature is intended to do the same, Spitzer-Resnick said Monday.

"It will train staff to handle challenging behavior much better, in a safer manner, reduce the use of dangerous seclusion and restraint in schools and when used it will require that it be done so safely," Spitzer-Resnick said.

The bill would prohibit school employees "from using seclusion on a pupil, using any physical restraint that poses certain identified risks to a pupil, or using any mechanical restraint on a pupil," according to a Legislative Reference Bureau analysis of the bill.

A school employee may use physical restraint or a timeout on a pupil only if certain requirements, established in the bill, are met. The bill would require instructors to be trained in the safe, effective, and appropriate use of physical restraint and timeout.

The Wisconsin Education Association Council, the state's teachers' union, opposes the legislation.

In a statement, Christina Brey, a WEAC spokeswoman, said organization officials support some aspects of the proposed legislation, like teacher training and parental notification, but have questions about some of the language in the bill.

It is important "to Wisconsin educators that students are physically and emotionally safe at school," Brey said. The organization supports "a reasonable approach to ensuring that safe environment - for children as well as school staff."

Companion bills in both houses of the Legislature have been referred to education committees, including the one chaired by Sen. John Lehman, D-Racine. Supporters are hoping the bill will receive public hearings in both houses.

Members of Congress last year introduced legislation intended to ban the use of seclusion and restraint in schools nationwide, after a national disability rights group issued a report detailing cases of abuse, inconsistent state laws and lax oversight of the use of such methods in schools. The report included the story of Racine mother Hasmig Tempesta.

In 2007, Tempesta withdrew her son, Zachary, from a Racine Unified school, after teachers improperly restrained him in a chair with straps when he was 3 years old for up to 50 minutes at a time.

Following a December 2007 investigation, state education officials determined that teachers at Red Apple Elementary School improperly restrained Zachary, now 6. The investigation spawned several changes in Unified's practices.

Tempesta said she is hopeful, but worried about the bill's chances in the Legislature.

"I'm just hoping that the unions and people that don't really understand children with disabilities, don't have a negative affect on this outcome," Tempesta said. "Wisconsin had a really proud history of standing up for people with disabilities. Wisconsin is just now starting to say, hey, maybe this is something we should look at."

National Council on Disability Calls for Affordable, Accessible, and Appropriate Housing for People with Disabilities
Last week the National Council on Disability (NCD) released a report titled The State of Housing in America in the 21st Century: A Disability Perspective that provides recommendations intended to improve housing opportunities for people with disabilities. This report looks at the state of housing for people with disabilities with the intent to provide recommendations that can improve housing opportunities. The research contained in this report provides a comprehensive overview of the state of housing in the twenty-first century and answers important questions about the current housing needs and options for people with disabilities living in the United States.

NCD undertook this study with three objectives in mind: 1) to evaluate public laws, policies, and program initiatives affecting the housing opportunities available to Americans with disabilities and others who have accessible housing needs for whatever reason, whether due to aging or a temporary disability; 2) to analyze what housing, supports, and other benefits are available through the public, nonprofit, and/or private sectors; and 3) to provide recommendations that can improve housing opportunities for people with disabilities in the United States.

According to NCD Chairperson Linda Wetters, "Affordable, accessible, and appropriate housing is critical and integral to making a community more livable for people with disabilities. In this report, NCD finds that there are unmet housing needs based solely on standard measures of housing affordability. This analysis also reveals a gap between current policy goals and outcomes — even with laws in place requiring a portion of units to be accessible, some developers and property owners do not comply. Whether it is due to ignorance or intent, the evidence suggests we have missed opportunities to increase the supply of accessible, affordable housing."

The findings and recommendations contained in this document are grounded in data and research gathered from federal agencies, either directly or via published reports, and from research completed by academics and disability advocates. This report also provides evidence of what can be effective in meeting the range of housing needs among a diverse group of consumers with disabilities. This includes best and promising practices drawn from real examples, and lessons learned from experts working on housing issues and policy. In reviewing best and promising practices, data was triangulated from different sources — interviews, published reports, and Internet research — to assure a comprehensive assessment. To this end, the research has been reviewed and commented on by a diverse panel of experts and consumer groups that have all provided valuable insights and guidance.

Some of the recommendations include:
  • Increase affordable, accessible, and integrated housing for people with disabilities to meet needs and demand.
  • Increase access to existing units.
  • Prevent further loss of affordable, accessible housing.
  • Expand and focus usage of vouchers.
  • Improve fair housing enforcement of disability rights.
The purpose of NCD, an independent federal agency, is to promote programs, practices, policies and procedures that ensure full inclusion of people with disabilities into all aspects of society. NCD accomplishes this mission by providing advice and making recommendations to the President, Congress, governmental agencies, and other stakeholders.

SOURCE National Council on Disability
Dealing With the Financial Burden of Autism

January 23, 2010

Patient Money

Dealing With the Financial Burden of Autism
By WALECIA KONRAD, The New York Times

When Jeff Sell’s twin sons were determined to have autism 13 years ago, he, like so many other parents in the same situation, found himself with a million questions: Will my children be able to function? What are the best treatments and where do I find them? How will this affect the rest of my family?

And besides those monumental worries, Mr. Sell kept asking himself another fundamental question as he began the long string of doctor and therapist visits with his sons: “How in the world am I going to pay for all this?”

Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.

Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.

That figure includes medical costs like as doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.

“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said.

More families are grappling with the disorder than ever before. One of every 110 8-year-old children in the United States has been diagnosed with autism — and one of every 70 boys, according to the latest survey from the Centers for Disease Control and Prevention, released last fall. That is up from one in 150 children in a comparable report released in 2007.

“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”

Certainly families feel the financial strain. Many health insurance policies do not cover autism treatments, while those that do often have severe limits. And there is very little government or private financial assistance available.

In many cases these children will need assistance all their lives, Mr. Ganz points out. Making sure there is money for the future is something else parents worry about.

When his sons received their diagnosis, Mr. Sell was practicing personal-injury law in Texas, and he began paying for many of their treatments from his own income and savings. In 2005, as he became more involved in autism issues, he joined the staff of the Autism Society of America in Bethesda, Md., where he is now a vice president.

His sons are now 15. One, Joe, is talkative and considered “high functioning.” The other, Ben, is nonverbal with profound autism.

“What works for one child doesn’t necessarily work for the other,” Mr. Sell said. “So we’re talking about finding and paying for twice as many treatments.”

In the early years, the Sell family had some autism coverage under Mr. Sell’s health insurance. But claims for certain therapies, tests and treatments were often denied. “I was very aggressive about appealing those denials, and I often won,” Mr. Sell said.

But even with coverage, Mr. Sell found he needed to pay enormous amounts out of pocket to come close to giving his sons the 20 to 40 hours of behavioral therapies each week that were often recommended. (Eventually, as discussed below, Mr. Sell was also able to obtain financial assistance through a special part of the Medicaid program.)

Although direct financial support may be scarce and hard to obtain, there are several autism information and advocacy groups that routinely help parents navigate financial hurdles. Here is a road map parents can use to get started.

CHECK YOUR INSURANCE Coverage for autism treatments is still far from common, but it is improving. Some large employers offer policies that cover treatment, and 15 states have passed laws mandating at least some autism-related coverage. The Autism Society’s Web site lists the relevant states. (That section of the site is still under construction, but you can scroll down to see the states.)

In addition, Maine and New Hampshire both have legislation pending that could pass soon, Mr. Kemp said.

If you do have coverage, watch for limitations. Because treatment for autism is so individualized, there are few uniform standards or protocols for insurance companies to follow. That means parents often have to argue that a certain therapy or treatment is necessary. Also, be sure to check any caps on treatment, Mr. Sell warns. What may look generous — say $36,000 a year — can be spent quickly. Or there may be limits on how many sessions of a particular type of therapy will be paid for each year.

And you will want to coordinate your insurance coverage with the services you may be receiving from your child’s school. If an occupational therapist sees your child regularly in school, for example, you may want to save your insurance dollars for social interaction therapies.

In addition, you may need to be especially aggressive about coverage for some medical conditions. Gastrointestinal problems, for instance, are extremely common in autistic children.

Mr. Sell found himself fighting for such coverage for Ben, his nonverbal son. The insurance company had denied the claim for gastrointestinal testing, saying that because Ben’s behavior problems were related to autism, the testing was not covered.

Mr. Sell, convinced Ben was in pain and could not tell anyone what was wrong, appealed and won. The tests showed that Ben had ulcers and lower-intestine problems that still occasionally flare up and require treatment.

MEDICAID WAIVERS Some states offer Medicaid coverage for children with autism without taking the family’s income into account — only the child’s diagnosis. This is usually reserved for fairly serious cases but is worth exploring, Mr. Sell said.

“This was a godsend for us,” he said. The waiver, he said, allows families access to services that private insurance won’t cover and that they wouldn’t be able to afford otherwise.

With the waiver, Mr. Sell was able to get more home-based speech and occupational therapies for his sons to supplement the sessions they receive at the public school they both attend. Medicaid also covers recreational therapy during which a specialist takes Ben and Joe on hikes and other outings, giving the parents some much-needed downtime.

To see if your child is eligible for a Medicaid waiver, go to the Centers for Medicare and Medicaid Services Web site and click on your state.
Because Medicaid is one of the few government lifelines available, waiting lists for waivers can be extremely long. Mr. Sell, for example, waited nine years to get waivers for his sons.

“Just go ahead and get on the list and try not to be too discouraged,” advised Mr. Sell. “Many states are moving faster now.”

GO LOCAL Many autism advocacy organizations, including Autism Speaks and the Autism Society of America, are affiliated with local chapters throughout the country. In addition, most states, counties, towns and cities provide lists of local autism resources and support groups.

It is people in the local groups who will know all the resources available. They can also help you keep up with the latest research, so you don’t spend time and money chasing the many unsubstantiated “cures” out there. They will also have lots of practical advice, like which dentists, optometrists and even barbers are good with autistic children.

“You think going to the barber is no big deal?” Mr. Sell asked. “Just try it with an autistic child.”

OTHER RESOURCES A handful of organizations like Easter Seals and the National Autism Association offer financial help to struggling families. Autism Family Resources and United Healthcare Children’s Foundation also offer grants to pay for autism treatments.
State Ends Adult Mental Health Services at Milledgeville Hospital

State Ends Adult Mental Health Services at Milledgeville Hospital
By Craig Schneider
The Atlanta Journal-Constitution,
8:33 p.m. Wednesday, January 20, 2010

State officials said Wednesday they are shutting down adult mental health services at Central State Hospital in Milledgeville, the age-old hospital that symbolized the darkest days of psychiatric care in Georgia.

Yet even as Georgia discontinues this care at the 168-year-old facility, the state remains under fire from federal officials attacking the safety and treatment at the state's seven mental hospitals and demanding improvements.

Georgia faced a Jan. 15 deadline to be in substantial compliance with improvements laid out by the U.S. Justice Department, and state officials say they are awaiting the federal assessment on meeting that goal.

The sprawling ancient hospital had problems long ago and in recent times. The facility in the Macon area repeatedly has been the target of investigations by The Atlanta Journal-Constitution.

In November, federal officials found so many shortcomings at Central State, with patients attacking one another and receiving poor treatment, that state officials announced the facility would no longer accept new patients.

By Wednesday, the adult mental health population had dwindled from 95 in November to just 30 due to discharges. Officials, needing significant funding to renovate the aging facility, decided to simply move these 30 patients to other state hospitals. The goal is to shut down adult mental health services by March 1.

Some of Central State will survive. That includes about 150 patients in the forensic unit, which is comprised of patients assigned by the criminal courts who are considered mentally ill. A few hundred patients will remain in the units that serve a nursing home, as well as patients with mental retardation and other developmental disabilities. Two hundred employees will be transferred or laid off, said Tom Wilson, spokesman for the state Department of Behavioral Health and Developmental Disabilities.

The hospital stopped treating children last summer, Wilson said.

"If they can't keep patients safe at Milledgeville, then they have to find somewhere else," said Ellyn Jeager of Mental Health America of Georgia.

Advocates were worried the transfer of patients might cause overcrowding in other facilities, and that patients from the Milledgeville area might be moved away from their families and loved ones, which could hamper their recovery. State officials said the change will not create any overcrowding elsewhere.

For many Georgians, the hospital that opened in 1842 still strikes a fearful image, representing a time when society sent its unwanted or problematic people to an isolated location. The place many know only as "Milledgeville" has had its own fire department, ZIP code and huge cemetery. As it grew to a population of some 12,000 patients, it boasted the largest kitchen in the world.

In 1869, Berry Hall, an inexperienced attendant, became the first staff member killed by a patient, according to an Oct. 5, 1997, story in the AJC.

The hospital's creation was part of the 19th century's social reform movement. Mentally ill people often were hidden away in the homes of families or sent out to live in the street. Care at the hospital thrived in the mid-1800s as its leaders abolished such physical restraints as chains or ropes, according to the New Georgia Encyclopedia.

However, its population growth overwhelmed the staff, and such brute-force interventions as insulin shock and electroconvulsive therapy occurred in massive numbers, the encyclopedia said.

Thousands of patients were buried there with only numbered stakes as grave markers. In the 1960s, groundskeepers pulled up many stakes and tossed them aside to mow the lawn. In recent years, volunteers have conducted a cemetary restoration project.

In 1959, the hospital was the nation's largest mental institution, housing 12,500 patients. Jack Nelson's series in the AJC exposed the following facts: Only 48 doctors were on staff, and a dozen of them had alcohol or drug problems (several had been hired off the hospital's wards); doctors took money from pharmaceutical companies to try experimental drugs on patients, and other abuses.

Nelson's stories led to numerous reforms.

More recently, the AJC in 2007 pointed a harsh spotlight on the hospital in a series of stories that revealedsince 2002 that more than 100 patients had died under suspicious circumstances in the seven state mental hospitals.

The Justice Department has stayed focused on the inadequacies at Central State over the past year, sending state officials a series of letters detailing conditions that continue to endanger patients' safety.

Federal authorities said a recent visit to Central State confirmed that "grave harm continues to occur at the state psychiatric hospitals."

Josh Norris of the Georgia Advocacy Office said the state needs to move away from placing people in these hospitals and provide more community-based services. State mental health officials say they are heading in that direction.

But Jeager, the advocate, said the difficulty with that strategy is the same as it was 150 years ago: many people don't want facilities for mentally ill people in their neighborhood.

Big Differences Remain on Mo. Autism Coverage Bill

Big Differences Remain on Mo. Autism Coverage Bill

Advocates, insurance companies are many dollars apart on Missouri autism insurance proposals

Despite nearly a year of negotiations, big differences remain between insurers and advocates for autistic children who are urging Missouri to mandate coverage of a costly but promising behavioral therapy.

House and Senate committees each heard testimony Tuesday on proposals that would require insurers for small and mid-sized employers to offer policies covering the diagnosis and treatment of autistic children.

At issue is how much coverage should be offered — and how long it should last — for those seeking "applied behavioral analysis," an intensive therapy that some parents say produces dramatic improvements in their autistic children.

Advocates prefer a proposal that would require insurers to pay up to $72,000 annually for the treatment of people up to age 21. Insurance company lobbyists say that is too costly and lasts too long.

Blake Williamson, vice president and senior medical director for care management at Blue Cross and Blue Shield of Kansas City, suggested an alternative on Tuesday of providing up to $32,000 annually of coverage for children ages 3 through 7, with lesser coverage for older children.

Legislative committees took no immediate action on the proposals, though Gov. Jay Nixon and legislative leaders alike have declared that autism insurance legislation will be a priority for the 2010 session.

"This is not going to be rushed through," said Rep. Kevin Wilson, R-Neosho, chairman of the special House Committee on Health Insurance that is considering the bills. But he later added: "I think we can get to a bill that's fair to everyone and can get through the House and Senate."

Last year, the Senate passed legislation that would have required coverage of up to $55,000 annually for applied behavioral analysis for children younger than 15. But the bill never received a vote in the House, where Speaker Ron Richard appointed a special committee to study the issue further before the 2010 session.

Autism is a broad term used to describe a spectrum of neurological disorders that affect about 1 out of 110 children in the United States, according to the federal Centers for Disease Control and Prevention. The St. Louis region is near the forefront nationally, with an autism prevalence of about 1 in 83 children, said John Mantovani, the founder and medical director of St. John's Mercy Child Development Center in St. Louis.

The advocacy group Autism Speaks said 15 states already have laws requiring coverage of medically necessary autism services such as behavioral therapies. It funded an actuarial analysis last year by the consulting firm Oliver Wyman estimating an autism insurance requirement would result in a less than 1 percent increase in the cost of premiums in Missouri.

But insurers insist costs will be higher. Policies offered by Anthem BlueCross BlueShield of Missouri could have to rise by about 3 percent under the legislation favored by advocates, said lobbyist David Smith.

The proposed autism insurance mandate would apply to about 40 percent of the private insurance market in Missouri, primarily those covered through policies for small-to-medium-sized groups. Individual policies would have the option of including autism coverage. Larger group insurance plans often are self-funded and thus federally exempt from state insurance regulations.

Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

People with disabilities need more housing
Press of Atlantic City
By Thomas Barlas, Staff Writer

Between 4,000 and 5,000 developmentally disabled people in New Jersey are on waiting lists to get into noninstitutional housing units, but there is not enough space to meet the demand, according to the state Department of Human Services and the chief executive officer of The Arc of Atlantic County.

Arc CEO Deborah Davies said about half of those people have been identified as "ready to go" to either a group home or individual residence, but there are too few available housing units and too little funding for the program.

Davies said New Jersey provides more institutional housing for the disabled than many other states, but that the state has not shifted as many resources to getting people out of institutions and functioning in the community compared with other states.

The Arc is pushing to get more clients into the mainstream community. Davies said that benefits the organization's clients but also helps the general population better understand - and help - the developmentally disabled.

"Say hello," Davies said. "Be willing to be open to understanding people."

Officials with the state Department of Human Services said there is a priority waiting list totaling almost 5,000 people. The priority list includes parents who take care of their developmentally disabled children and who are at least 55 years old, and the developmentally disabled in critical need of services because of some special circumstance, they said.

They also said the department is increasingly moving to place the developmentally disabled in group homes, apartments and condominiums.

Department spokeswoman Pam Ronan said state developmental centers hold about 2,700 people. The number of developmentally disabled people living in community housing exceeds 7,700, she said.

She admitted the process seems slow but said the state must proceed with caution in many cases.

"You don't just want to move someone who may have very complicated medical or physical needs from a development center and move them into a community," Ronan said. "It takes a lot of support around the person, in addition to the home."

Ronan also said about 80 percent of the families who are notified that community housing is available opt instead for an in-home support service.

Department statistics also show that, at least from 2005 to 2008, the state has spent an increasing amount of money on community residential services. The figure increased from $458 million in 2005 to $574 million in 2008.

Meanwhile, funds spent on developmental center residential services decreased from $419 million in 2005 to $371 million in 2008, statistics show.

Davies shared her concerns with the editorial board of The Press of Atlantic City on Wednesday as part of a new Press initiative to have community, business and political leaders talk with the newspaper about their work and their plans.

The Arc, which will celebrate its 50th anniversary next year, has between 200 and 250 employees, most of whom are full time. The agency gets 90 percent of its funding from the state and serves about 700 individuals and families each year.

The organization provides its clients with employment services, recreational and arts programs and family support. It also runs a thrift shop at 6409 Ventnor Ave. in Ventnor, and operates nine group homes and 26 condominiums and apartments for about 140 developmentally disabled people.

When asked what the agency would do if its approximately $9 million annual budget were doubled, Davies was quick to say The Arc would invest in more housing.

"People who live in our residential services tend to live in them most of their lives," Davies said. "We see them grow up. We see them age."

Davies said The Arc is planning two supervised group homes in Galloway Township, financed by the U.S. Department of Housing and Urban Development, or HUD. Each home will have four, one-bedroom apartments and a common area, she said.

Davies said this is the first time her association will try this kind of setup. The goal is for each home to be flexible enough to provide for a wide range of client needs, she said.

"There's a big need for privacy," she said, and at the same time, "There's a big need not to be lonely."

Since the demand for space in group homes far exceeds the supply, the group hardest hit is parents who have cared for their disabled children at home, Davies said. The state has to comply with legal requirements to transfer people who do not need to be institutionalized into the homes first.

"Parents who have taken care of their children all along do not have the necessary support system," she said.

The Arc provides some help so those parents can take a break from the rigors of raising developmentally disabled children, she said.

Davies said she also believes in creating "social capital," getting clients and staff involved in the community.

"Having people be part of the community is essential," Davies said.

For instance, Davies said about 15 of The Arc's clients belong to their local Kiwanis club. The members work with other Kiwanis organizations on a variety of programs, she said.

The Arc also partners with organizations such as Margate's Jewish Community Center - which includes some of the agency's clients in a summer camp - and the Ocean City Fine Arts League, she said.

Arc staff become involved in community events to further build that social capital, she said. Staff members participate in activities such as preparing meals for the elderly, she said.

The local chapter changed its name several times as it evolved from the Association for Retarded Children to the Association for Retarded Citizens to The Arc.

She said its clients pushed for that last name change about 15 years ago, as they found the word "retarded" a hurtful label.
A Future Without Down Syndrome?

A Future Without Down Syndrome?
by Dana Goldstein, The Daily Beast – Blogs & Stories

With improved testing just a few years away, the number of secular, educated families affected by Down syndrome could plummet. Dana Goldstein talks to parents who hope that doesn’t happen.

“There was a time when I thought about Down syndrome nearly all the time,” blogger Maya Kukes wrote five years ago. “There wasn’t a day that I didn’t wake up, roll over and think, ‘My baby has Down syndrome.’ And yes, I was sad about it. I’ll go ahead and say that I was full-on depressed about it.”

Today, Kukes is more likely to brag about her son’s triumphs than fret about his limitations. Leo’s speech therapist reports that he’s developing “a sophisticated sense of humor.” He can sight-read half a dozen words. He’s protective of his 2-year old sister, Ellie, and loves to run. But when I call the 36-year-old editor at work to discuss the latest research on the genetic disorder that affects her son, she asks me to hold on for a second while she shuts her office door. A few minutes later, Kukes is choking back tears after I ask her if she ever gets the sense that other parents in her cohort—upper middle class, urban, highly educated—are wondering how, with all the genetic technology now available during pregnancy, she ended up with a child with Down syndrome?

“I would have wondered that, before, if I met someone like me,” she says. “I was never close to anyone who had any sort of handicap.” Kukes did get genetic screening, a blood test and ultrasound that showed her fetus was at a slightly heightened risk of Down syndrome. But doctors told her the more conclusive amniocentesis test carried a risk of miscarriage higher than the risk that her baby would be born disabled, so she opted out.

As emerging technology is expected within several years to allow pregnant women, for the first time, to test safely and conclusively for the disorder as early as the first trimester, a sense of responsibility—of having to provide a model of special-needs parenting—is growing among some college-educated parents dealing with Down syndrome.

Considering that several studies suggest as many as 90 percent of couples who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy, it’s possible—even probable—that this particular moment represents a demographic crossroads for Down syndrome, and that the number of secular, college-educated families affected by the condition is about to drop off steeply. Many parents raising children with the condition fervently hope that does not happen.

“I worry there won’t be a lot of kids with Down syndrome, and Leo will not have a large peer group,” Kukes says.

The new genetic technology—a blood test that will isolate fetal from maternal DNA, checking for the telltale 47th chromosome that marks the condition—could reverse an upward trend in the incidence of Down syndrome across the population. About 400,000 Americans now live with Down syndrome. According to a study published last month in the journal Pediatrics, between 1979 and 2003, the number of babies born with the condition increased from nine to about 12 per 10,000 births. The biggest reason for the shift was women waiting longer to have children; increased maternal age is the biggest known risk factor for the disorder.

In part because older parents tend to be well-educated and affluent, a vocal community of Down syndrome advocates arose. The result was increased visibility of people with Down syndrome in popular culture—think of movies like The Other Sister and TV shows like Life Goes On—as well as more funding for Down syndrome research and educational mainstreaming of disabled children. Medical advances also helped people with Down syndrome live longer, more productive lives, in large part through treating the heart problems that plague so many babies born with the condition.

Now advocates worry that more aggressive genetic testing could halt that progress, in part by relegating Down syndrome to groups already more likely to have children with the disorder, either because they are opposed to abortion or because they cannot afford the full range of prenatal care: Hispanics, the very religious, and the poor. Harold Pollack, a public-health expert at the University of Chicago, stresses that this hasn’t happened—at least not yet—in the United States. But a 2006 study in France found that Down syndrome was becoming more prevalent among certain disadvantaged socioeconomic groups that were less likely, for cultural reasons, to access prenatal testing.

“There’s a strong correlation between disability and poverty to begin with,” says Andrew Imparato, president of the American Association of People with Disabilities. “The concern we have is that once the children are born, will they have the supports they need for education and health and a positive life outcome? In low-income communities, the supports are not the same.”

Rachel Adams, a professor of English and American studies at Columbia University, is one of the special-needs parents whose ranks may dwindle in coming decades. She was studying the history of disability in popular culture for years before she gave birth to her son Henry, now 2. Still, learning her newborn had Down syndrome was “the biggest shock of my life,” she says. “A tremendous shock.”

Adams describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Adams sees a contradiction in our society’s increasingly friendly bearing toward disabled people and its obsession with developing ever more revealing genetic tests. “Now that I have Henry, I go from such optimism to such extreme worry,” she says. “There are ethicists who ask, ‘At what cost to humanity is the elimination of whole categories of people?’ You’re living with these contradictions—wanting women to have complete reproductive freedom but wishing the choices they had were conveyed to them in a different way.”

Kukes says she doesn’t want other parents to pity her.

“I feel like a lot of times when I’m out with Leo, it’s my responsibility not to put a happy face on Down syndrome, but to show people that he’s not the end of the world,” she says. “When he was born, I did think it was the end of the world. But now I think he’s the best thing that ever happened to me. And I know it sounds cliché.”

Dana Goldstein is an associate editor and writer at The Daily Beast. Her work on politics, women’s issues, and education has appeared in The American Prospect, Slate, BusinessWeek, The New Republic, and The Nation.

Maine DHS cuts freeze programs for people with disabilities
Staff Writer

BIDDEFORD — Lack of money in state coffers is forcing nearly all state agencies to cut back on services. In the Maine Department of Health and Human Services, the cuts are affecting services provided to those with cognitive and other developmental disabilities.

Take 32-year-old Michael Doggett: A series of operations shortly after his birth left him with developmental disabilities and a diagnosis of mental retardation.

“He could never live by himself,” said his mother, Sue Ellen Doggett.

She and her husband Ed care for their son in their Waterboro home. However, both parents are getting older. Doggett said she fears what will happen to Michael once she and her husband are no longer able to care for him.

“Parents are afraid to die because there’s no place for their children to go,” said Cullen Ryan, executive director of the Maine Coalition for Housing and Quality Services.

In the past, someone in Michael’s position would be eligible for services through one of Maine’s waiver programs, which pays for a number of support solutions for people diagnosed with mental retardation, autism or another developmental disability. These programs have traditionally allowed disabled people to live in a community setting such as a group home.

In October 2008, the comprehensive waiver program that provided a host of services, including around the clock support, closed. The support waiver day program also closed in October 2009.

Now the only time a person can move into a waiver program is if another moves off, usually due to death, said Charlene Kinnelly, a lobbyist with Maine Association for Community Service Providers.

As a result, there is a waiting list for new people who need these services but cannot access help because of lack of funding, said Brenda Mitchell, director of operations for Community Partners in Biddeford.

According to the Office of Developmental Services in the Department of Health and Human Services, 230 people are on the waiting list for the comprehensive waiver. Half of those people are classified as adult protective status, meaning that they are in immediate need of services to protect their health and welfare.

And that list is growing every day.

The same is true with the 50+ person waiting list for the support waiver.

Most of the new clients who move onto the support waiver are those just graduating from high school. While in school, young people with developmental disabilities can receive services through their school.

For instance, Michael Ryan’s 13-year-old son, Camden, who has been diagnosed with a number of developmental disabilities, including mental retardation, receives services through Portland’s public school system.

Camden Ryan attends seventh grade and takes special education classes. He also receives 20 hours of in-home support designed to help him learn to navigate society and get ready for adulthood.

Once he graduates from high school, however, those support services will end.

A person who leaves the school system has nothing, said Kinnelly, and the whole family can suffer.

Because the support waiver is no longer accepting new people, said Cullen Ryan, it’s likely that either he or his wife, who both currently work in professional positions, will have to quit their job to care for their son.

In addition, their son – who could potentially hold down a job of his own and contribute to society – won’t have that opportunity if support services are not restored.

Stacie Smart ,who is 37 and lives in Berwick, receives services through the support waiver and lives on her own and volunteers. She said without this service she would probably just stay home with nothing to do.

According to the Maine Department of Education, the number of students who are diagnosed with either mental retardation and/or autism and who will potentially need some level of support services after they graduate is 35 this year. By 2019, the number could increase to 113.

The waiver program was started in 1983, said Kinnelly. It began after Maine started removing people from Pineland, a state institution for people with developmental disabilities, in the 1950s, and accelerated that process in the 1970s.

Clients on waivers give up their right to state institutional care and opt instead for community services. Community placement in group homes was deemed more humane, and less costly to the state, she said.

For years, Maine was considered a leader in providing services to people with intellectual disabilities, said Kinnelly, but “the safety net is starting to have some significant holes.”

Since new people can’t receive services through the waiver, those in the most urgent need are being moved into crisis shelters.

The majority of waiver services are paid for through MaineCare, for which each dollar of state funding is match by two dollars of federal funds.

But placement in crisis shelters is paid for entirely with state money.

In addition, organizations that provide housing and services for people with intellectual disabilities are in trouble, which in turn is hurting the clients for whom they acre.

For the first time in her 28 years with Community Partners, she has had to ask clients to pick up and move from their homes in order to consolidate, said Mitchell.

She added that the per person cost is going up, which puts the organization in financial jeopardy.

“We certainly understand these are very difficult times,” said Kinnelly.

However, she said, “These are people who cannot support themselves.”

“I don’t think we’re being as creative as we might be,” said Kinnelly.

She advocates for cutting some state requirements for training, licensing and documentation as one way to cut costs.

“It’s almost like a time bomb that hasn’t gone off,” said Kinnelly.
Housing Advocates Settle Suit for Renters with Disabilities

Housing Advocates Settle Suit for Disabled Renters

GOP donor Alex Spanos' sons to pay millions in settling federal lawsuit for accessible housing

By GARANCE BURKE Associated Press Writer
FRESNO, Calif. January 13, 2010 (AP)

Thousands of renters with disabilities are poised to get extreme home makeovers thanks to a major settlement ending a federal lawsuit against a development company run by the sons of GOP donor and San Diego Chargers owner Alex Spanos.

The settlement announced Wednesday by the National Fair Housing Alliance will require the A.G. Spanos Companies to retrofit 82 apartment buildings in 14 states with wheelchair-friendly doorways, graded walkways and other improvements to ease access for the disabled.

The companies will pay about $7.4 million to rehab up to 12,300 rental apartments, and will set up a $4.2 million fund for disabled renters and homeowners across the country who want to redo their own homes, bringing the total cost to about $14 million, the housing advocacy group said.

"The A.G. Spanos Companies are proud to reach this agreement," Spanos' son Michael Spanos said in a statement. "(We) share the same goal: ensuring that people with disabilities enjoy equal access to housing."

The federal Fair Housing Act requires construction companies to build dwellings that are accessible to people with disabilities, and the lawsuit, filed in 2007 by five advocacy groups, accused the Spanos firms of failing to live up to the law.

Housing activists came across the problem after sending out a team of undercover agents to Spanos complexes in Georgia, Florida and California to masquerade as potential homebuyers. The team found dozens of doorways too narrow to accomodate wheelchairs and other design flaws that blocked access to the disabled.

"Sometimes you would find the kitchens were too narrow, in others you would find it was the bathroom, or sometimes accessibility issues in the parking lot," said Shanna Smith, president of the Washington, D.C.-based group. "We were pretty stunned that this was still such an issue in the United States.

During the negotiations, Smith said Michael Spanos met personally with civil rights groups and housing advocates. His father, Alex, one of the largest contributors to the 2004 campaign of George W. Bush, has retired from that aspect of the family business, attorney Michael Gurev said.

The total number of units that need rehabbing will likely be lower than 12,300, as will the retrofit cost, in part because the Stockton-based Spanos companies will try to recuperate some of the money from architects and designers, Gurev said.

The settlement was approved late last year by a U.S. District Court judge in Oakland, and the first payments to cover attorneys' fees and damages arrived a few weeks ago.

It is likely one of the largest of its kind, Smith said.

In comparison, the largest housing accessibility settlement brought by the Department of Justice applied to 5,400 units, said spokesman Alejandro Miyar.

Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

The Arc Mourns the Loss of Tim Quinn

The Arc Mourns the Loss of Tim Quinn
January 12, 2010

It is with profound sadness that we learned of the passing of Timothy James Quinn, a much beloved member of The Arc family and Executive Director of The Arc Northern Chesapeake Region in Maryland. Tim lost his courageous battle against cancer on Sunday evening.

Tim was widely respected and fiercely admired for what everyone who knew him termed his visionary leadership and solid stewardship. Since 1990, he was at the helm of The Arc Northern Chesapeake, an organization he transformed from facility based services to support services. Among the many bold decisions he made was to be one of the first chapter executives to close their sheltered workshops by moving employees into integrated settings. Tim traveled throughout the country providing training on how this was accomplished and giving others the opportunity to build on his success.

As an activist, Tim was an authentic agent of change and his involvement in disability issues was evident on every level: national, state and local. He was a member of the Maryland Developmental Disabilities Council and served on the boards of several organizations including The Harford Leadership Academy, Family Partnership, and the Maryland Association of Resources for Families and Youth.

He was a past president of The Maryland Association of Community Services, and represented The Arc on the ADA Accessibility Guidelines Federal Advisory Committee. In 2009, Tim was the recipient of the Executive Excellence Award from The National Council of Executives of The Arc (NCE). Tim was considered a major force within NCE particularly on its training activities; his mentorship and leadership skills served the organization well.

All who knew and worked with Tim observed his deeply humanistic approach to his work, especially when working directly with people with intellectual disabilities and their families. The understanding, respect and integrity revealed in those relationships embodied the values he lived out in providing leadership to his chapter in Maryland and to his commitment to people with intellectual disabilities leading full and inclusive lives.

Tim’s colleagues at The Arc Northern Chesapeake Region noted that “Integrity, respect, community building, responsiveness, team, inclusion and self-determination are not just the core values of The Arc, but principles by which Tim lived his life.”

Memorial Details: 

Viewing on Wednesday, January 13 from 2:00 p.m. – 4:00 p.m. and from 7:00 p.m. – 9:00 p.m. at:

Ruck Towson Funeral Home
1050 York Road
Towson, Maryland   21204
Phone: 410-823-1700
Directions are available here:  http://www.ruckfuneralhomes.com/index.cfm

The funeral will be Thursday, January 14 at 10:00 a.m. at:

St. Joseph Parish, Cockeysville
100 Church Lane
Cockeysville, Maryland  21030                          
(410) 683-0600    

OPM Official Griffin Emphasizes Workplace Diversity
OPM Official Griffin Emphasizes Workplace Diversity
By Joe Davidson
Tuesday, January 12, 2010; A15/The Washington Post

As a woman who uses a wheelchair, Christine Griffin knows a thing or two about discrimination in the workplace.

But now, more than ever, she's in a position to do something about it.

Griffin is in her second week as deputy director of the Office of Personnel Management. Her boss, John Berry, has made her the point person to improve Uncle Sam's record on diversity in hiring and promotions.

"I've done a lot of things in my life where women weren't particularly accepted at the time," she said during an interview in an office with pictures still unpacked. "I've certainly experienced discrimination and know what that feels like."

She has also been a "twofer," someone who fills two demographics, acknowledging opportunities she was offered because someone "particularly wanted a woman with a disability in their workplace."

Griffin brings more than gender and her wheels to the discussion. Her experience extends from the personal to the professional. A labor and employment lawyer by trade, until recently she was a member of the Equal Employment Opportunity Commission, where she wasn't shy about criticizing the OPM. Before that she was executive director of the Disability Law Center in Boston. She is also an Army veteran.

At the EEOC, Griffin launched Project LEAD (Leadership for the Employment of Americans With Disabilities), which was designed to increase federal hiring of disabled people.

Despite that project and other efforts, Uncle Sam's hiring of people with disabilities has been in a steady and disturbing decline. Every year since fiscal 1994, with one exception, the percentage of people with disabilities in the federal workforce has dropped, from a measly 1.24 percent to an all but invisible 0.97 percent in 2006, according to EEOC data. The next year saw a small increase, to 1.03 percent, but the percentage fell to 0.98 percent in 2008.

Latinos are also significantly underrepresented in the federal workplace. They account for 8 percent of Uncle Sam's employees. In other cases, demographic groups may be well represented in the total workforce, but are too few in the upper levels of government. African Americans, for example, are 18 percent of the total workforce, more than their percentage in the general population, but hold just 6.7 percent of the jobs at senior pay levels. Women, representing 44 percent of the workforce, are 27.7 percent of those who make the big bucks.

Griffin joins the agency as it prepares an overhaul of the government's defective hiring process. At "every avenue into the federal government," she said, "I want to make sure that we're also talking about how to increase diversity."

Griffin said agencies should do some introspection and look at their unintended barriers to hiring and advancement. "What is your particular area where you are lacking in advancement for people, and opportunity for people to come in the door, and why is that?" she wants them to ask themselves. "Start doing some barrier analysis."

Too many agency officials regard that kind of activity as time-consuming work that doesn't rise to the top of their priority lists. Instead, it needs to be part of their strategic plan "to be the agency of choice for people who have the skills that I need," Griffin said. It's "getting off your butt and going out there and making people know that you really do want to cast that wide net and get people in the door."

Griffin is praised by people who have worked with her on improving diversity.

"I would give her high marks," said Jorge E. Ponce, co-chair of the Council of Federal EEO and Civil Rights Executives. Her new position provides "a wonderful opportunity," he said, for the EEOC and the OPM to better coordinate their activities.

In 2006, the Government Accountability Office "found little evidence of coordination at the operating level between EEOC and OPM in developing policy, providing guidance, and exercising oversight, despite overlapping responsibilities in federal workplace EEO. . . . Good management practice as well as federal statute and executive order call for coordination, and not doing so results in lost opportunity to realize consistency, efficiency, and public value in EEO policy making and oversight."

Ponce said it is unrealistic to think that the government "cannot find Hispanics with the citizenship and educational requirements to be better represented" in the federal workforce.

To make diversity a greater priority in the government, Berry created an office within the OPM to focus on it. A diversity professional "is going to look at government-wide diversity strategy . . . to create a more diverse workforce," Griffin said. "That's a concrete thing that has been done."
People with Disabilities Recover Benefits

People with Disabilities Recover Benefits
By Catherine Whittenburg, Tampa Tribune

Thousands of Floridians with developmental disabilities will get another chance to fight state cuts to the services they rely on - even if the state denied their appeals last year.

That includes people like Peter Ciccarello, a 32-year-old Tampa resident who has spina bifida. Ciccarello, who lives with his mother and uses a wheelchair, lost dental care when the spending cuts took effect last year. The state denied his appeal of the cuts, and he now needs almost $7,000 worth of fillings and bridge work.

"This should be based upon the person's needs," he said.

It also includes Sean Mason, a 39-year-old Seffner resident diagnosed with autism, schizophrenia and intellectual disabilities. Yvonne Mason, his mother, has appealed a 42 percent cut in funding for services for her son, which she fears could cause him to wind up in an institution.

Ciccarello and Mason are among the 5,800 patients and families who protested their assignments last year to spending levels, or "tiers," which restrict how much the state will pay for services ranging from therapies to transportation.

In response to an order from the 1st District Court of Appeal, the state Agency for Persons with Disabilities is now tweaking its rules for assigning people to those tiers and re-evaluating the cases of everyone who appealed in 2009. If they wish, they will be able to appeal again when the state reassigns them to a spending tier later this year.

Unlike last year, everyone also will get to make their case - first in an informal hearing with APD staff, and if necessary, before an administrative law judge, APD director Jim DeBeaugrine said.

The agency denied hearings last year to the majority of people who appealed, finding their complaints "legally insufficient." That sparked protests from families, as well as a legal challenge from the Advocacy Center for Persons with Disabilities.

"We don't anticipate denying them this time," DeBeaugrine said.

Those may not be the only changes ahead.

Even as the Agency for Persons with Disabilities struggles to bring its current system into compliance with the court's order, it is also working on a new plan to change the way Florida serves people with developmental disabilities in the future.

"We're committed to getting this right," DeBeaugrine said.


The state Legislature designed the tier program in 2007, when APD had a budget deficit of about $155 million. Lawmakers responded by demanding that the agency cut spending on services and divide the 30,000 beneficiaries of the agency's Home and Community Based Services program into spending tiers.

That sent waves of fear and anger through families of the developmentally disabled, as well as the providers paid to care for them. From a purely cost-cutting perspective, the changes largely succeeded. As of last week, the agency had whittled its projected deficit for 2010 down to $26 million.

"I think it was the right decision at the time; there wasn't really any other decision to be made," said state Sen. Durell Peaden, who oversees health and human services spending in the Senate.

Because of the way the cuts were structured, their impacts varied widely. Many people experienced little or no change in services, but others lost as much as half when they were assigned to a tier.

That's one of the problems that DeBeaugrine said he hopes to solve, by moving to a system of "individualized budgeting."

The "iBudget" idea, he said, is to create a computerized algorithm to evaluate the needs of each person, based on a wide variety of factors ranging from their age to their ability to clean themselves.

The computer program would use the information to calculate a customized budget for each person. Families would have significantly more control over how they spend the dollars allotted to them for services than they have under the current system.

If lawmakers approve iBudget this spring, it could take effect statewide as early as 2011.

That sounds better, said Yvonne Mason, Sean's 70-year-old mother and caregiver, but only if the state gets its calculations right. She is concerned that the state will not take into account enough variables - for example, the age of parents who are caregivers for people with developmental disabilities. "That makes a big difference in the care of a person."

It will be up to lawmakers this spring to approve or reject the proposal, just as they will decide how much to spend on services for the disabled in a year when the state faces a budget deficit of more than $2.5 billion.

Peaden, of Crestview, said he hopes to minimize the budget cuts to APD, given the reductions it has already weathered. As for iBudget, "I'm willing to look at anything that maximizes the services they need and cap what they don't," Peaden said. "This is one of the toughest issues we face up here."

Paul Marchand's Remarks at Lorraine Sheehan's Memorial Service

Remarks at Lorraine Sheehan’s Memorial Service – 1/6/2010
PAUL MARCHAND, Staff Director, Disability Policy Collaboration of
The Arc and UCP

Today I bring a heartfelt sense of loss and sorrow and deep sympathy from the hundreds of thousands of members and staff of The Arc from throughout our land.

For any of you who may not be acquainted with The Arc, it’s the premier national organization advocating for the rights, benefits and supports for persons with intellectual disabilities.

This New Year marks The Arc of the United States 60th Anniversary.

I’ve been very fortunate to have been a part of this organization for 44 of those 60 years.

Thirty National Presidents have led this organization.

Ten of these are women and they all served with distinction.

Three were particularly distinguished for different reasons in different decades – all were parents of a child with intellectual disabilities.

Dr. Elizabeth Boggs from New Jersey presided over the organization in the early 1960’s. She was an original founder of The Arc; she conceptualized developmental disabilities, she was the foremost expert on Social Security programs related to disability and served for many years as the long time volunteer chair of the national governmental affairs initiative without the benefit of staff.

Dee Everitt from Nebraska was National President in the early 1980’s. Dee was a vigorous advocate for Home and Community Based Services and the elimination of institutions. She fought these battles despite receiving direct threats to her personal well being.

Lorraine Sheehan from Maryland served as National President in the early 2000’s. She was the facilitator of several cross disability collaborations, including the Disability Policy Collaboration at the national level for which I work. She assumed the role of The Arc Governmental Affairs Committee Chair before and after her presidency. Lorraine was a tireless mentor to hundred of advocates, be they self advocates, family members, professionals or policy makers.

To advocate at all levels of our government, often simultaneously, required an amazing commitment of time and energy on Lorraine’s part.

Given her health status throughout her adult life, how she maintained her focus, enthusiasm and vigor mystified all who knew her well.

She possessed the resolve of a lioness so well camouflaged as a peaceful dove.

Her advocacy also required, particularly during her national service which extended for almost 2 decades, substantial time away from her family.

So as we praise Lorraine’s many accomplishments and those accolades she receives are so clearly richly deserved, we should also reflect on the many sacrifices made by her children, her extended family and her housemate Joan.

They supported and inspired her as I’m sure she inspired them.

So thank you, Lorraine, for your many courageous endeavors on behalf of the million of The Arc’s constituents and thank you to all of Lorraine’s family, close friends and colleagues for sharing her with us.

Although the vast majority of families and self advocates that she helped will never know Lorraine, her legacy lives on and we are all the better for it.
The Arc of Northern VA Rallies Against Budget Cuts



Friday, January 8, 2010, 10:00 a.m., Northern Virginia Community College- Annandale Campus, Ernst Center, 8333 Little River Turnpike Annandale, VA 22003-3796

The Arc of Northern Virginia and over 300 advocates for people with disabilities plan to testify in response proposed cuts to services in Governor Kaine’s 2010-2012 Budget Proposal. The outgoing Governor’s budget proposal is being called An Assault on Home and Community Based Services in Virginia” according to individuals, family members and providers for people with developmental disabilities.

On Friday, December 18, 2009, Governor Kaine released his budget proposal for the 2010-2012 Biennium, as well as his amendments to the budget for FY09. These budget proposals contain drastic cuts to services for people with intellectual and developmental disabilities. The proposal cuts more than $100 million worth of ID/DD services and more than $270 across all of the Home and Community Based Waivers (Elderly and Disabled, ID, DD, HIV/AIDS, Technology Assisted). The proposed budget essentially guts an already under-funded system that currently ranks 46th nationally in its use of Medicaid dollars in the community.

At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to build a NEW, 75-bed, state-operated institution in Chesapeake, VA. The proposed rebuilding of this institution represents a major retreat from forty years of state public policy supporting the move to home and community-based supports; and caring for these 75 residents will cost, on average, three times what it would cost to serve a person who meets the same level of need for services in the community.

Advocates will join together to let decision makers know that investing dollars in building community supports for people with disabilities is the fiscally and morally responsible decision to make in this difficult budget climate. Nancy Mercer, Executive Director for The Arc of Northern Virginia states: “We can not go backwards and spend our limited resources in re-building institutions to care for people with disabilities…to be honest Virginia can not afford to build an institution big enough to hold everyone who is in need of services at an average annual cost of $194,000 per person.”

Speakers at the Virginia Budget Hearing will include:

  • Individuals with disabilities
  • Family Members
  • Community Leaders

    NEWS MEDIA CONTACT: For The Arc of Northern Virginia: Nancy Mercer,
    Tel: 703-532-3214 ext. 106 or cell 703-304-8537, nmercer@thearcofnova.org 
Controversial Advocate Nominated to National Council on Disability

East Brunswick man with autism, controversial advocate nominated to federal council
By Karen Keller/The Newark Star-Ledger
January 05, 2010, 6:17AM

Ari Ne’eman keeps a copy of the U.S. Constitution folded in his wallet. It’s a constant reminder that his "war" — his advocacy and activism on behalf of people with autism — is worth fighting, even if it engenders controversy and the occasional death threat.

Eight years ago, the 22-year-old East Brunswick native was an unhappy, bullied child with few friends. At the private special-education school he attended, staff members prepared students for the future by teaching them to wash dishes, he said.

Ari Ne'eman, seen here in East Brunswick, [photo] is the first person with autism nominated to the National Council on Disability.

Today, after a swift and sometimes bumpy ascent in the realm of national autism politics, he is the first person with autism to be nominated for a seat on the National Council on Disability. If confirmed by the U.S. Senate, he also will be the youngest person to serve on the board in at least 20 years, council spokesman Mark Quigley said.

President Obama submitted Ne’eman’s name last month, sparking a decidedly mixed reaction on autism blogs and message boards.

Ne’eman, who sometimes uses aggressive language and who has attacked the views of some of the best-known autism-advocacy groups, is untroubled by his critics.

"The real war is against prejudice, discrimination, lack of support and abuse," he said. "That’s a war I’m proud to say we don’t believe we should be taking any prisoners."

Some find fault with Ne’eman because, in their view, he’s not quite autistic enough. Ne’eman has Asperger’s syndrome, a relatively mild form of autism. Those with Asperger’s typically have difficulty with social interaction, a hallmark of autism. They’re often physically clumsy and intensely focused on a few subjects, almost to the point of obsession.

But they’re also typically of average or above-average intelligence, with good communication skills. Many people with more profound autism can’t speak at all, leading families to suggest Ne’eman isn’t the most appropriate advocate.

Ne’eman’s views and tactics are another matter.

He’s tossed verbal firebombs at Autism Speaks, one of the nation’s best-funded autism groups, accusing the organization of insulting people with autism by directing most of the money it raises to researching autism’s cause rather than helping those who already have the condition.

The exclusive focus on a cure, Ne’eman contends, amounts to medically engineering people like him out of existence.

"We should be spending at least as much money on improving our quality of life instead of trying to get rid of us," he said.

He occasionally complements his comments with guerilla tactics. Last month, he organized a protest outside of Carnegie Hall in New York City, where an Autism Speaks fundraiser was being held, he said. Ne’eman knows he’s a lightning rod, saying he’s received death threats. After one threat last summer, he said, he had to be escorted by police to speak at an event in New Hampshire.

But there’s little debate about his growing voice in the national autism debate.
As founder and president of the Autistic Self Advocacy Network, he’s watched his group spawn sister chapters in 12 other states.

He’s also served on state boards in New Jersey, fighting for the rights of people with disabilities.

The young activist’s efforts come at a time of growing awareness and worry about autism across the country. According to the latest data from the U.S. Centers for Disease Control and Prevention, one in 71 boys and one in 110 children meet the criteria for autism, making it one of the leading childhood developmental diagnoses.

Ne’eman has risen to prominence while still in college. He attends the University of Maryland-Baltimore County on a full scholarship.

Supporters say his voice, however unwelcome to some, is needed now more than ever.

"He’s our future," said Monique Dujue Wilson, the mother of a 23-year-old son who is severely autistic. "Within uncomfortable is honesty."

Staff writer Mark Mueller contributed to this report.
Valley man realizes dream of working in salon

Source: Lebanon Daily News

Matt Waller, 24, sets a hair dryer for a client. (Lebanon Daily News - Earl Brightbill)

Matt Waller has dreamed about working in a barbershop or a beauty salon since he was in second grade. His dream finally became a reality last summer, when he landed a job at the U-Turn Salon in Palmyra.

Waller, who has Down Syndrome, said he enjoys cutting clients' hair.

"All different types of clients want their hair cut. I like to have satisfied customers," 24-year-old Waller said.

Randy Taylor, owner of the Palmyra salon, said it's great to work with Waller.

"Matt is the happiest and most honest guy I know," Taylor said. "His friendly interactions with clients make their time at U-Turn Salon more enjoyable and fun. I could see Matt's passion for beauty care, and I was eager to mentor him in the industry."

Waller learned how to cut and style hair by attending the Barber Styling Institute in Camp Hill. In January 2006, he earned his license.

His mother, Lisa Waller, helped him with the schooling.

"I drove him back and forth to the barber school and then tutored him through the barber school," she said.

Waller then applied to salons and barbershops throughout central Pennsylvania. Waller said a friend who gets her hair done at the Palmyra salon recommended him to the owner of U-Turn.

At the Palmyra shop, Waller shampoos hair, helps customers with various products and sweeps floors, among other tasks. He works three hours at the shop on Thursdays.

His mother is proud of her son's achievements.

"I think it's great. His cousin is a hairstylist, and one of his sister's good friends got her (hairstyling) license and they both had helped him when he was going to school," Lisa Waller said.

The teacher at the school also helped him, his mother said.

"In life, there are a lot of people who look at people with disabilities and think they won't be able to do that. The teacher worked with him," she said.

To get his license, Waller had to complete a written test as well as do a haircut, curl hair, and do a face shave.

Waller is now working on his manager's license, which would allow him to operate a beauty shop. Ultimately, Waller said, he would like to someday own his own shop.

In addition to working at U-Turn, Waller also has a couple of other part-time jobs; he works at Hoss's restaurant in Hummelstown, where he wraps silverware, and at Paxton Street Home, where he cuts hair. The home provides housing for disadvantaged adults in the Harrisburg area.

Waller's passion has earned him the opportunity to be featured in a statewide campaign called Works for me. He can be seen in TV commercials, billboards, direct-mail pieces, and on the Web. The Works for me program is focused on education people with disabilities about the opportunities for employment, helping them to find training and a job, as well as technology assistance.

Celebration of the Life of Lorraine Sheehan to be Held Jan. 6

Lorraine Sheehan: Honoring an Extraordinary Life

On Wednesday, January 6, a “Celebration of an Extraordinary Life!” honoring Lorraine Sheehan will be held at the Annapolis Loews Hotel Ballroom at 1:30 p.m. Lorraine passed away on December 19 and was an indefatigable disability rights advocate and a treasured member of The Arc family. 

Paul Marchand, Staff Director of the Disability Policy Collaboration is among those who will pay tribute to Lorraine. Other speakers include former Maryland Governor Harry Hughes, elected officials and dignitaries, friends and neighbors and advocates.

Lorraine was an active member of The Arc for many years—serving as President of The Arc of the United States, The Arc of Maryland, and The Arc of the Central Chesapeake Region. As President of The Arc at the time the Disability Policy Collaboration was established, she personally signed the agreement with UCP. 

In her leadership role as President and previously as the Chair of The Arc’s Governmental Affairs Committee, she provided the strongest pro collaboration push from The Arc’s volunteer leadership. In addition, she had been currently serving as the Co-Chair of the DPC Steering Committee.

Please RSVP to sharris@thearcmd.org or to The Arc of Maryland at 410-974-6139 if you plan to attend the “Celebration of an Extraordinary Life!” You are also invited to share your recollections, pictures and stories on Lorraine’s Facebook at: facebook.com/lorrainemsheehan

In lieu of flowers, donations may be made to:

The Arc of the Central Chesapeake Region
931 Spa Road
Annapolis, MD 21401
Lorraine Sheehan - Wash Post & Baltimore Sun Obits

Lorraine M. Sheehan, 72; fought for rights of disabled
By T. Rees Shapiro – Washington Post
Thursday, December 24, 2009; B06

Lorraine M. Sheehan, 72, a former Maryland secretary of state who championed the rights of people with disabilities, died Dec. 19 at Johns Hopkins University Hospital in Baltimore.

She died of complications from cystic fibrosis. She had been an Edgewater resident for 26 years.

Mrs. Sheehan, a Democrat, served as a Prince George's County state delegate from 1974 to 1983, when Gov. Harry R. Hughes chose her to be secretary of state. At the time she was the third woman to serve in that capacity since the position's creation in 1838.

"Women who have for so long been the backbone of political campaigns are now deciding that they want a piece of the action," Mrs. Sheehan told The Washington Post in 1980. "It takes a tremendous ego to run for public office. . . . A person has to stand up before a group with the attitude: 'I'm the best person for this job.' A lot of women don't perceive themselves as being that kind of person. They don't want to get up on the platform and say: 'Look, I'm smart. I know where we ought to be going, and I can help to get us there.'

Mrs. Sheehan's biggest focus while in the House of Delegates was the creation and funding of programs for people with disabilities. Her son John was born with mental disabilities and was later found to have autism. She introduced the first bill addressing the state Developmental Disabilities Administration's waiting list for residents eligible for service, which Mrs. Sheehan said was too long and underfunded.

A bespectacled, spunky woman who was known to wear ponchos and colored stockings, Mrs. Sheehan was recognized for her public service in 2002 when she was inducted into the Maryland Women's Hall of Fame.

Lorraine Marie Cantin, a native of Manchester, N.H., moved to the Washington area in the mid-1960s. As a delegate, Mrs. Sheehan served on the House Judiciary Committee and the House Ways and Means Committee. She resigned as secretary of state in 1987. Shortly after, she joined Melwood, a nonprofit organization in Upper Marlboro that provides housing, job training and employment opportunities for people with intellectual and developmental disabilities.

In the mid-1990s, Mrs. Sheehan became the public policy director for the Baltimore-based Maryland Disability Law Center and also had a private business as a lobbyist in Annapolis for organizations and issues involving disability rights. For many years, she served as the president of what is now known as The ARC of the United States, a community-based organization for the developmentally disabled.

Her marriage to Peter Sheehan ended in divorce. Besides her son John, of Edgewater, survivors include three children, Peter Sheehan of Hedgesville, W.Va., Niall Sheehan of Laurel and Laura Carr of Edgewater; and seven grandchildren.

When John, now 43, was found to have autism, Mrs. Sheehan refused to institutionalize him as his doctors and educators had suggested. Instead, she crafted legislation in the House of Delegates that would help those with disabilities live on their own in decent housing. Many years ago, Mrs. Sheehan set up a trust to pay for her son's expenses so he could remain in the house where he grew up, in the neighborhood where everyone knows his name.

"Nobody wants to think they are going to die," Mrs. Sheehan told the Baltimore Sun last year. "But it certainly is a relief and comfort to know you . . . have a fighting chance to keep John happy as he is now."

Click here to read obituary in the Baltimore Sun http://www.baltimoresun.com/news/obituaries/bal-md.ob.sheehan24dec24,0,3659931.story

The Arc Mourns the Loss of Lorraine Sheehan

The Arc Mourns the Loss of Lorraine Sheehan

It is with great sadness that The Arc of the United States announces the passing of Lorraine Sheehan. Lorraine died on Saturday, December 19 after a long struggle against pneumonia, compromised by cystic fibrosis. Lorraine was an indefatigable disability rights advocate and a treasured member of The Arc family. She has been an active member of The Arc for many years—serving as a member of The Arc of Prince George's County, and as Past President of The Arc of the United States. As President of The Arc at the time the Disability Policy Collaboration was established, she personally signed the agreement with UCP. 

In her leadership role as President and previously as the Chair of The Arc’s Governmental Affairs Committee, she provided the strongest pro collaboration push from The Arc’s volunteer leadership. In addition, Lorraine was President of The Arc of Anne Arundel County, and Government Affairs Chair and President for The Arc of Maryland.  She had been currently serving as the Co-Chair of the DPC Steering Committee.

Lorraine Sheehan grew up in New Hampshire and moved to Maryland with her husband and family in 1965.  She has four children and six grandchildren.  At an early age, her third child, John, was diagnosed as deaf and “mentally retarded.”  Later, he was diagnosed with autism and determined not to be deaf.  John has significant disabilities and lived at home with Lorraine in Edgewater, MD.

Because of John and his special needs – especially related to his schooling – Lorraine became involved in the disability movement.  She focused her attention on independent living opportunities for individuals with disabilities and later on advocacy on behalf of individuals with disabilities and their families.  It was her passion for advocacy that led to her emerging as one of Maryland’s leading advocates for individuals with disabilities.

Indeed, she became one of the nation’s most powerful voices for our constituency, due in no small part to her profound commitment, keen intelligence and charismatic presence.

In 1974, Lorraine was elected to the MD House of Delegates, where she served for nine years. In the General Assembly, she introduced bills on transportation for students with disabilities and the first bill ever addressing the Developmental Disabilities Administration's waiting list.  In 1983, Governor Harry Hughes appointed her Secretary of State of Maryland for one four-year term.

Because of her expertise in the area of disabilities, Lorraine was appointed a Commissioner to the Anne Arundel County Housing Authority.  She continued to focus much of her work on independent housing for people with disabilities, ensuring that even individuals with the most significant disabilities have an opportunity to choose where they live.

As a public official, she educated other policymakers and the public at large while helping to transform communities into places of inclusion. As a parent, she waged a tireless fight for the rights of people with disabilities and their families. Lorraine mentored many family members and professionals.

Professionally, Lorraine went on to be named the Public Policy Director for the Maryland Disability Law Center; she also worked with the Public Sector Consulting Group. She continued to volunteer her time and expertise, by serving on boards and committees charged with improving the lives of individuals with disabilities. Lorraine will be greatly missed – she was a true force in advancing the rights of people with intellectual and developmental disabilities.

Peter V. Berns
Chief Executive Officer


If you would like to send condolences:


Joan Scott (Lorraine’s housemate and dear friend)

108 Park Avenue

Edgewater, MD 21037


John Sheehan (Lorraine’s son)

108 Park Avenue

Edgewater, MD 21037


(It would not be inappropriate to send one card addressed to both Joan and John)


Laura Carr (Lorraine’s daughter)

2923 Edgewater Drive

Edgewater, MD 21037


The family has requested donations in lieu of flowers be made to:

The Arc of the Central Chesapeake Region

931 Spa Road

Annapolis, MD.  21401
Loving the job earns a client of The Arc a month of her own
Source: The News Sentinel - Fort Wayne

The excitement on Ieasha Thomas’s face showed when she was looking at the Easter Seals Arc calendar that featured her as Miss June. Arc Client Thomas said it was fun taking pictures for the calendar, especially on the job at O’Charley’s, a restaurant in Jefferson Pointe.

The Arc of Indiana 2010 calendar features people with intellectual and other disabilities in their places of employment throughout Indiana. According to Public Relations Director Tony Belton, Thomas was chosen for her story and because she has been employed at O’Charley’s for seven years.

“How could we not select her?” said Belton.

Thomas almost lost her job because of the downturn in the economy, but with help from her Arc job coach Sandy Frank and O’Charley’s kitchen manager Paul Cole, Thomas was able to learn new skills to keep working at O’Charley’s.

Thomas now prepares foods, doing such tasks as weighing and packaging. She likes her job, but still misses her first job of rolling silverware.

Thomas also works in the Arc workshop. There she rolls binders straps for milk cartons.

“I’ve got lots of friends,” said Thomas about why she likes working at both O’Charley’s and the workshop.

According to Franks, who is also Arc’s lead employment specialist, there are about 30 clients who work at businesses ranging from McDonald’s to Dupont Animal Care. There are about 200 clients in the workshop.

This employment benefits both the clients and the community. According to Benton, people with disabilities are generally more loyal to their employers – they show up on time, won’t change jobs and do their jobs diligently. According to Franks, “They want to be perceived as normal. They want to do anything anybody else does.” Working in the community is an opportunity for people with disabilities to do that.

For Thomas, Frank has seen the affects of Arc. “I’m sure it has made a big improvement to her quality of life, and it has definitely changed her life,” said Frank.

Arc’s slogan is “Creating Solutions and Changing Lives.” This certainly is the case for Thomas, who said she looks forward to working and making money.

Any companies interested in working with Arc can call Franks at 469-2824.
The Arc's Board Member Appointed by President Obama for Member, National Council on Disability

President Obama announced individuals to participate in key administration posts.  One of those individuals was Chester Alonzo Finn, a board member for The Arc of the United States.

From the announcement:

Chester Alonzo Finn, Nominee for Member, National Council on Disability
Chester Alonzo Finn is a Special Assistant with the New York State Office of Mental Retardation and Developmental Disabilities, providing services, supports, and advocacy to individuals with development disabilities and their families; in October of 2009 he was recently appointed to the OMRDD’s Leadership Team.  He is also President of the national board of Self-Advocates Becoming Empowered, Board Advisor to the Self Advocacy Association of New York State (SANYS) and a member of the Justice for All Action Networking Streaming Committee.  Mr. Finn is also an active member of the Board of Directors for The Arc of the United States, the world’s largest community based organization of and for people with intellectual and developmental disabilities. Mr. Finn is blind and has a developmental disability and is committed to fighting for the civil rights of people with disabilities.

Students learn from students
By Autumn Grooms

Ryan Barta stood alongside his peers, waiting to see who this year’s Tomah High School homecoming king would be.

The crown was teasingly held above the heads of several seniors on homecoming court before coming to rest on his.

The 19-year-old’s arms shot into the air and the message he signed to the crowd — friends, thank you — was unrehearsed and heartfelt.

He couldn’t say it enough times.

He couldn’t say it fast enough.

“When he was born with Down syndrome, we didn’t have a clue of what to expect,” his mother Linda Barta said.

“We never dreamed something like this would be possible for Ryan.”

Like many special education students, Ryan was included in the classroom at a young age and took the fear out of what it means to have a disability.

He made friends with his classmates and, as he transitioned into high school, became the football team’s water boy and a drummer in the band.

Tomah High School students always welcomed and included Ryan and “have made such a difference in his life,” Linda Barta said.

“What they have given him, I hope he has given back,” she said.

There are many lessons — acceptance, tolerance, appreciation — students learn from interacting with all kids who attend their school, Principal Marlon Mee said, “but it also teaches that anything can be accomplished if they try.”

These important lessons can’t be fully taught in the classroom, Mee said. They need to be applied in the hallways as well as at athletic events and home.

“When I was in high school, the Ryan Bartas of the world were relegated to some obscure section of the school, never to be seen or heard from,” Mee said in a letter to parents.

“An education is more than academics. Some kids may be having difficulty learning geometric equations, diagramming sentences, or locating Wisconsin on a map. However, they are learning about life. They are learning tolerance, compassion and understanding.”

This past year, I was fortunate to meet Ryan Barta and Allysha Morabito, a Melrose-Mindoro High School student with Down syndrome who was crowned prom queen last spring.

Neither lobbied for the title but both cherished the hugs and goodwill that followed once the crown was placed upon their head.

There is so much good that happens every day in our schools from special education students being included in the classroom and other activities.

They learn from their peers and, yes, their peers learn from them.

Let’s all remember this holiday season to think of the good that can happen when we take the time to get to know our neighbors as friends and offer them the respect they deserve.

“I can’t think of a prouder moment or a more emotional moment than at that pep (assembly) when (Ryan Barta) was announced king,” Mee said.

“The kids were standing up and cheering. I can’t describe it.”

I can.

It was inspiring.

No Way to Refer to the Vulnerable


No way to refer to the vulnerable
By Randolph Siegel
December 18, 2009

Imagine a prominent magazine, winner of a National Magazine Award for "general excellence," publishing a column that makes fun of developmentally delayed children. Or an Emmy Award-winning comedy show in which a leading character has sex with a mentally disabled woman and then mocks her disability. Or a popular Web site, with 3 million monthly visitors, that has more than 600 cruel references to "retard" on its site. No need to use your imagination, because these are just three examples of how the media elite too often ridicule the millions of Americans who are cognitively impaired due to debilitating brain disease or injury.

As a member of the media who has a developmentally disabled child, I cringe when I see snark like this from New York magazine savaging an interview with the actor Alec Baldwin in Parade magazine: "The whole thing reads like it was As Told To a slow third-grader with vocabulary issues. ... This thing sounds like the dumb-Charly (sic) parts of 'Flowers for Algernon.' "

Or this season's episode of HBO's "Curb Your Enthusiasm" in which Larry David's sidekick, Jeff, seduces a mentally disabled character and then belittles his victim after she speaks out.

Or headlines on the popular Gawker site such as "Retard Homo Newspapers Scared of Awesome Commenters!" or "Retard Nude Harvard Porn Kid: Worth Your Vomit?" surrounded by ads from some of America's largest advertisers.

Call me overly sensitive. Accuse me of being humorless. Say whatever you want. But if the true measure of a society is how it treats its most vulnerable citizens, then these mean-spirited attacks are not only indefensible, they reinforce the intolerance and discrimination that these children and adults often face in their schools, communities or workplaces. I had never met a "retard" until my daughter was labeled one after untreatable epilepsy ravaged her cognitive development. It's been a painful, frustrating journey for us. Millions of other American families have experienced similar shattered dreams, with a neurologically damaged child, parent or friend -- or someone they love who has returned home from Iraq or Afghanistan with a traumatic brain injury. Over the years, I've bit my tongue whenever I hear "retard jokes" at business functions -- or see a movie like DreamWorks' "Tropic Thunder" in which "retards" are vulgarly disparaged in a lame effort to generate laughs -- or hear a song like the Black Eyed Peas hit single "Let's Get Retarded." Even when President Barack Obama described his subpar bowling skills by making an insensitive joke about the Special Olympics on "The Tonight Show with Jay Leno", I tried to internalize the pain. But that's a losing strategy and no longer justifiable.

As Americans with intellectual disabilities are increasingly stigmatized and dehumanized in our media and popular culture, it's time -- now more than ever -- for their families and friends to help them fight back.

Randy Siegel is president of Parade Publications.
Copyright © 2009, Chicago Tribune

A CLASS Act Deserves Support

December 16th, 2009 – United Feature Syndicate

A CLASS Act Deserves Support

By Cokie Roberts and Steven V. Roberts

We are the lucky ones. Not only are we blessed with two mothers in their nineties—we are doubly blessed with mothers whose resources cover their care. That’s not the norm in America, where the aging population’s need for long term care imposes harsh economic as well as emotional stress on many families. A provision of the health care bill aims to offer some relief to those families and we’re all for it.

The Community Living Assistance Services and Supports Act, called CLASS, was one of Teddy Kennedy’s pet proposals in recent years. It’s a pretty simple idea. Workers would voluntarily pay into a fund for at least five years and then be able to draw out from it if they become disabled by age or illness. A daily stipend tied to the degree of disability, to be set by the Secretary of HHS but probably starting at about $75, would go for whatever was needed—someone helping out at home, transportation to senior day care, installation of handicap friendly devices—allowing many individuals to remain in their communities and out of costly nursing homes.

For people who aren’t as lucky as we are, that’s often the only choice. Their parents, or a disabled brother, might need assistance in eating, bathing, dressing or moving from a chair to the bathroom. A small stipend can make all of the difference. It can mean an elderly person can stay at home with some assistance getting dressed and fed. It can mean family caretakers can keep their jobs if someone can cover for them at home in the hours they are away from a live-in parent.

As it is now, in order to receive care many disabled and elderly people are forced to divest themselves of all their assets so they can qualify for government assistance through the Medicaid program. And in many places that means moving to a nursing home. We taxpayers are footing the bill for those nursing homes, which usually run about $200 a day.

Under the long term care plan now before the Congress, the people who receive the care pay for it. Premiums would be automatically deducted from paychecks unless a worker makes a positive determination to opt out of the program. And the law as drafted by the Senate specifically states “No taxpayer funds shall be used for payment of benefits.”   The program is designed to pay for itself through premiums and interest on the trust fund generated by those premiums, which can’t be touched for five years.

In the first ten years of the program the Congressional Budget Office expects the CLASS provisions to add about $72 billion to the federal coffers--a huge chunk of change tempting to lawmakers who would use it to draw down the deficit. That’s a legitimate fear, given the Congressional track record on other trust funds. And a “Sense of the Senate” amendment insisting that the CLASS fund should not be used for anything other than long term care doesn’t do much to quell the skeptics who believe the program will eventually grow into a massive budget buster.

And those skeptics abound, some of them spurred on by the insurance companies that sell long term care policies. Despite language passed by the Senate that requires CLASS to stay sound over a 75 year period, critics insist that the program is bound to go broke when the number of people who need long term care, now about ten million, more than doubles with the retirement of the Baby Boom. Premiums will go so high in order to keep up with benefits, they argue, that no one will buy them so taxpayers will have to subsidize them.

There are lots of reasons to believe that won’t happen. But even if it did, it would be no worse for taxpayers than what’s happening right now. We are paying about $100 billion a year for long term care through Medicaid and that number is going to go geometrically higher if no other provision is made for people who need help. How can forcing people into poverty so the government can pay for them be better than setting up a program where workers pay for themselves? How can pushing people into nursing homes be better than letting them stay in their houses? As a caller to a public radio program on the CLASS plan asked, “Why not try something where I can exercise my own responsibility for my future?”

Funding Cuts May Close Group Homes In NC

The Huffington Post – 12/17/09
Funding Cuts May Close Group Homes In NC

Group homes for people with developmental disabilities in North Carolina are in danger of closing after the state reduced funding, reports Dwight Otwell for the Cherokee County Scout. Funding was cut to help fix a statewide budget crisis. "[The homes] are having to rethink every sheet of paper they use," said Yvonne Trent, a social worker in Cherokee County.

In Unaka, N.C., 12 men and women with learning and developmental disabilities live in Autumn Halls, a group home owned and operated by Will Hayes and his daughter, Shelly Debty. "If we can't take care of [the residents] and feed them I would rather shut the doors," said Hayes, who often works 18-hour days to make up for staff whose hours have been cut back. "We have had to scale back on everything a little bit at a time," Debty told the Scout. "If we closed I don't know where [the residents] would go."

A second death reported at the New Lisbon Developmental Center in NJ
Tuesday, December 15, 2009
Trish G. Graber

A male resident at a Burlington County state facility for people with developmental disabilities died Friday, the second "unexpected" resident death there in two months.

Pam Ronan, spokeswoman for the state Department of Human Services, said the man, who was in his mid-50s, was found unresponsive early Friday at the New Lisbon Developmental Center.
"He was helped out of bed in the morning, dressed and helped into a chair in the lounge. When staff came to take him to breakfast, he was unresponsive to the staff and 911 was immediately called," Ronan said.

The man was taken to Virtua Memorial Hospital in Mount Holly Township and died six hours later, according to state officials.

The cause of death has not been released, and officials would not disclose the man's disability.

An investigation into the "unexpected" death is under way, Ronan said. To date, no employee disciplinary action has been taken and the state is awaiting results of an autopsy.

The man had been in state developmental centers since 1965. He had lived at New Lisbon, a facility with 417 residents, since the 1980s, Ronan said.

New Lisbon Developmental Center is one of seven state-run facilities serving people with developmental disabilities, such as cerebral palsy and autism.

Ten people have died there this year. On Oct. 12, a man living at the center died after choking on a sandwich. An unidentified employee was placed on leave without pay pending a Department of Human Services hearing scheduled for January. Ronan said it was the only case this year resulting in follow-up disciplinary action.

The Burlington County center has had a history of problems. In 2002, the Centers for Medicare and Medicaid Services found residents had been deprived of adequate medical and psychological care and were left unprotected from abuse.

The Department of Justice opened its own investigation that year. In 2004, the state agreed to four years of independent monitoring of practices at the New Lisbon center. That monitorship, which was extended one year, ended in August.
Long-Term Care Stirs Health Care Debate
The New York Times - December 14, 2009
Long-Term Care Stirs Health Care Debate
By Robert Pear 

WASHINGTON — Embedded in sweeping health legislation passed by the House and being debated on the Senate floor is a major new federal insurance program for long-term care intended to help people like Anne M. Rader.

Ms. Rader, 45, works at Booz Allen Hamilton as a consultant to federal agencies on emergency preparedness. Even though she has cerebral palsy and multiple sclerosis, she leads a full, active life. But she worries that she will lose her independence if her conditions grow worse.

“Having two disabilities, two disabling conditions, I can’t predict what will happen in the future,” said Ms. Rader, who lives alone in a condominium in Arlington, Va.

Advocates for older Americans and people with disabilities see the program as a long-overdue effort to address needs that will explode as baby boomers age. It is meant for people with severe disabilities who want to live in the community, though the benefits could also be used to help pay for nursing home care or assisted living.

But critics say that the program is unsustainable and that it could ultimately create serious fiscal problems for the government.

Senator Edward M. Kennedy, Democrat of Massachusetts, drafted the proposal several years before he died. Barack Obama, as a senator from Illinois, was a co-sponsor. Now, as president, Mr. Obama wants Congress to include it in the health care bill.

Senator Tom Harkin, Democrat of Iowa and chairman of the health committee, said: “This is the next logical step after the Americans With Disabilities Act. It will provide people with security and peace of mind. They won’t have to go to a nursing home or an institution if they become disabled through an accident or an illness.”

The bill would provide cash benefits if a person had a substantial cognitive impairment or was unable to perform two or three “activities of daily living,” like eating, bathing or dressing. The program would be financed with premiums paid by participants, through voluntary payroll deductions, with no federal subsidy. People could qualify for lifetime benefits if they became disabled after paying premiums for at least five years and working for three of those years.

The Congressional Budget Office assumes that premiums would be $123 a month for benefits expected to average $75 a day, or about $27,000 a year. The amount of benefits would vary, depending on the degree of a person’s disability. The secretary of health and human services could increase premiums to ensure “the financial solvency” of the program over 75 years.

The Senate bill says, “No taxpayer funds shall be used for payment of benefits.”

Senator Christopher J. Dodd, Democrat of Connecticut, said the benefits would allow people with disabilities to “live out their lives with decency and dignity.”

“What’s the alternative?” Mr. Dodd asked. “Getting rid of all your assets, impoverishing yourself, relying on your family or friends to take care of you in order to try to survive.”

But Republicans and some fiscally conservative Democrats said they feared that the government would eventually have to bail out the program because it would prove unsustainable.

“It would create a huge new liability down the road,” said Senator John Thune, Republican of South Dakota.

Paradoxically, the proposed new program accounts for more than half of the bills’ deficit reduction in the first 10 years — because the government would pay out far less in benefits than it would collect in premiums. But costs would grow later.

The Congressional Budget Office estimates that the long-term-care insurance program in the Senate bill would reduce federal budget deficits by $72 billion from 2010 to 2019. For the House bill, the comparable figure is $102 billion.

On Dec. 4, the Senate voted 51 to 47 to strip the program from the bill. The Senate had previously agreed to set a 60-vote threshold, so the effort failed, and the program remains in the bill. But it could become a bargaining chip in negotiations over the measure.

The effort to eliminate the program won support from 11 Democrats, including the chairman of the Finance Committee, Max Baucus of Montana, and the chairman of the Budget Committee, Kent Conrad of North Dakota.

Six of those Democrats said the program “would not be fiscally responsible.” The bill would “create a new federal entitlement program with large, long-term spending increases that far exceed revenues,” they said in a letter to the Senate majority leader, Harry Reid, Democrat of Nevada.

Richard S. Foster, chief actuary at the federal Centers for Medicare and Medicaid Services, has expressed a similar concern.

“There is a very serious risk that the program would become unsustainable,” Mr. Foster said, because people who have or anticipate health problems would be more likely to sign up than people in better-than-average health.

Some companies that sell long-term-care insurance are lobbying against the proposal, known as the Community Living Assistance Services and Supports Act, or Class Act.

One big insurer, Genworth Financial, said the program “would give individuals a false sense of security” and could discourage them from buying private insurance to cover the costs of long-term care.

“A government-run program that covers only a small fraction of Americans’ total long-term-care needs will mislead the general public and make it even harder for agents and advisers to encourage their clients to plan for this important retirement protection,” Genworth says on a Web site for its employees and agents.

Supporters of the program say it will help not only people with disabilities, but also those who care for them as well.

Carolyn A. Martin, 85, has a touch of dementia, kidney problems and severe arthritis. She cannot prepare meals, wash her clothes or bathe herself, and she often has trouble getting out of bed.

She lives in Columbia, Md., with her daughter, Alma M. Gill, who cares for her while holding a full-time job at a nonprofit organization.

“If I had someone to care for my mother four hours a day, it would change her life, and mine,” Ms. Gill said. “I feel guilty about leaving her alone when I go to work. If something were to happen to her, it would be my fault.”
Tight Job Market for People with Disabilities in DE
Tight Job Market for People with Disabilities in DE
Employment efforts strained by long recession
By EDWARD L. KENNEY - The News Journal

Anand Alexander, who has autism, has been selected employee of the year the past two years at the Wilmington law firm where he works as a clerk.

"No one can take that [title] from him so far," said Rochelle Burks, a legal assistant at the law firm of Ciconte and Wasserman on King Street. "He's the most reliable employee here. He does everything we do. He basically runs our file room."

Alexander, who is 25 and lives with his mom in Wilmington, is fortunate to have found a job. For people with a disability, the recession is the latest obstacle in a marketplace that historically has not accepted, in many cases, all but the able-bodied.

In November, 21.5 percent of people with disabilities who can work were employed compared with 70.4 percent of people with no disability, according to the U.S. Department of Labor. The data cover people with disabilities over age 16 who do not live in institutions.

The labor department, which began tracking employment for people with disabilities in October 2008, reported the unemployment rate for people with disabilities was 14.1 percent in November, compared with 9.2 percent for people with no disability. The overall national unemployment rate in November was 10 percent.

When it comes to people with disabilities, those numbers are likely to be much higher than the labor department's statistics show, said Danielle Smith-Blankenship, an employment specialist at Delaware Elwyn, which trains people with disabilities to find jobs, including Alexander. Many people do not apply for unemployment insurance or do not understand how to go about doing it, she said.

When a person is unemployed for more than 11 months, he or she is dropped from the employment count, and people with disabilities make up a large portion of those people, said John Kemp, executive director and general counsel of the U.S. Business Leadership Network, one of several entities spearheading the national Campaign for Disability Employment.

It's devastating," he said. "They are often last in and first out. Employers are looking for employees to do more tasks as they downsize. So it is a very difficult environment to be talking about the hiring of people with disabilities."

Smith-Blankenship, who helped Alexander find a job at the law firm almost three years ago after he had completed three months of job training at Delaware Elwyn, said she often takes to the streets in commercial districts to talk with potential employers, but also to look for help wanted signs in the windows. With the bad economy, many employers had stopped advertising for employees, but recently she is beginning to see more help-wanted signs.

Elwyn trains people like Alexander, teaching basic concepts such as how to read a bus schedule, the importance of punctuality and how to get along with peers. On any given day, about 150 people with disabilities work at Delaware Elwyn on 11th Street in Wilmington. The site receives both commercial and government contracts, including ones to assemble military medals, repackage goods for stores and sort X-rays for recycling.

On a recent day at the facility, workers lined tables in large rooms, forming assembly lines to fold and package military bandages. Companies contract with Elwyn for the work, and the clients are paid by the piece.

Ellen Thomas, director of work services programs at Elwyn's Delaware, Pennsylvania and New Jersey sites, has seen how the job market has constricted around those with disabilities.

"Many times, some of our people are able to do a piece of a job but not the whole breadth of a job," she said. "In this economy, I think a lot of the employers are less amenable to doing that, because they want more bang for their buck and they're more crunched money-wise. They're less flexible than they've been in the past."

People with disabilities make up a substantial portion of the state population, according to the Center for Personal Assistance Services. Using data from a survey conducted several years ago, it estimates that about 115,000 Delawareans have a disability, or 15 percent of the population age 5 or older.

Nationally, about 54 million Americans are living with a disability, or almost 20 percent of the overall population, Kemp said.

The way some potential employers view people with disabilities factors into the effort to find more jobs for them, Kemp said.

"I think attitude remains the biggest barrier," he said.

In Alexander's case, his colleagues worked around potential issues.

"We've had to reconstruct the file room a little bit," said Tina Russell-Presnell, paralegal supervisor at Ciconte and Wasserman, who helped Alexander land the job there.

Russell-Presnell agrees that those misconceptions often stand in the way of employment.

"[Employers] think of them as being so handicapped that there's just no way" they can do the work, she said. "They have that mindset. I know my bosses were skeptical in the beginning. But when they see how much [Alexander has] learned, they are just amazed. And they all love him. They all appreciate what he does."

Alexander, who works five hours a day and is paid minimum wage, proudly showed off his third-floor work station recently on his way back from taking out the trash.

"I do things like scanning and faxing and putting away files," he said. "And sometimes I do copying."

In the beginning, Alexander was very shy. And he took everything very literally, Russell-Presnell said. "If you told him to go down to the basement to get something, and you didn't tell him to come back, he wouldn't come back."

Russell-Presnell said the law firm has hired other employees from Delaware Elwyn, and they have turned out to be good workers.

"They're appreciative," she said. "They want to keep learning. They don't have the mindset that they already know that. When you're talking to Anand, he still listens before he says, 'I know that.' A lot of people think they know it all. He always wants to learn, he wants to absorb. And he's on time every morning. I don't hear the excuses that 'I missed the bus' or 'the car broke down.' He's always here, and he's always on time."

Vicki Haschak, the work center program manager at Delaware Elwyn, said about 15 to 20 new people come there to work and train each year.

"I have a person I worked with 25 years ago, and he still calls me every few weeks telling me how he's doing on his job," she said. "It's just rewarding. It's why we're here."

Additional Facts: DELAWARE ELWYN

Elwyn, formerly known as Elwyn Institute, was founded in 1852 as a school for children with cognitive disabilities. It has since evolved into an organization that provides residential programs, rehabilitation, vocational training and employment services for people with disabilities. Employers can call Delaware Elwyn at 658-8860 to be part of its employment network or to get more information.
Lawmakers Introduce Bipartisan Legislation to Protect Children from Abuse in Schools

Legislation will, for the first time, address seclusion and restraint in schools; Embodies principles set by Obama administration

From the Committee on Education and Labor

WASHINGTON, D.C. – U.S. Reps. George Miller (D-CA) and Cathy McMorris Rodgers (R-WA) today introduced legislation that would, for the first time, protect all children in schools from harmful uses of restraint and seclusion. The legislation embodies principles outlined in a letter U.S. Education Secretary Arne Duncan sent to Miller today. U.S. Sen. Chris Dodd (D-CT) is also expected to introduce companion legislation today in the Senate. The lawmakers unveiled the bill at a press conference this morning; click here to watch (67.4 MB file).

A U.S. Government Accountability Office report released last spring exposed hundreds of cases of schoolchildren being abused as a result of inappropriate uses of restraint and seclusion, often involving untrained staff. In some cases, children died. A disproportionate number of these victims were students with disabilities.

“Something is very wrong when our children are at risk in their own classrooms,” said Miller, the chairman of the House Education and Labor Committee who requested the GAO’s investigation. “In some cases, the abuses these kids are suffering are nothing short of torture inflicted at the hands of the very staff we entrust with their safety. Today is a critical first step toward finally ending this nightmare of abuse and ensuring that all classrooms are safe for students, their teachers, and the entire school communities.”

“As a parent, when I send my son Cole to school, my husband Brian and I send him with the expectation that he is safe from danger. We entrust him to teachers, principals, and aides. And we know those school personnel have done an outstanding job to help him and keep him safe. Yet, we know this has not been the case for other children, particularly children with disabilities who are the most vulnerable and need the most protection,” said McMorris Rodgers, a member of the House Education and Labor Committee and vice chair of the House Republican Conference. “I’ve looked into this and have come to the conclusion that there is a lack of training. As difficult situations arise, teachers or principals just don’t know what to do. The legislation that we are introducing today gives states the needed guidance and resources to enable teachers and school personnel to handle difficult situations in the most positive manner possible.”

“The tragedies associated with the inappropriate use of seclusion and restraint are not only unacceptable, they are unconscionable,” said Dodd.  “There is no place in our schools for what amounts to torture, and we need clear standards for the use of tactics that lead to the physical and psychological abuse of children.  This legislation will set clear guidelines so that children and educators alike can be sure of a safe learning environment.”

Restraint is used to restrict an individual’s freedom of movement. Seclusion is used to involuntarily confine a student in an area alone. Both practices are meant to be used only in situations of imminent danger. Among other things, the GAO found that restraint can become fatal when it restricts breathing, that many of the school staff who used these interventions in abusive ways had not been properly trained, and that these practices are often being used as a routine disciplinary tactic, rather than in response to an emergency.

In some of the cases GAO investigated, ropes, duct tape, chairs with straps and bungee cords were used to restrain or isolate young children.

Unlike in hospitals and other medical and community-based facilities that receive federal health funding, there are currently no federal laws addressing restraint and seclusion in schools. While the Children’s Health Act of 2000 regulates how and when restraint and seclusion can be used on children in these other settings, schools are not covered. State regulation and oversight varies greatly; many states provide no guidance or assistance regarding these behavioral interventions.

The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) would establish the first federal standards to protect students from misuse of restraint and seclusion and ensure the safety of everyone in the classroom. It would apply to public schools, private schools and preschools receiving federal education support. Specifically the legislation would:

    * Establish important minimum federal safety standards in schools, similar to the protections already in place in hospitals and other non-medical community based facilities
    * Limit physical restraint and locked seclusion, allowing these interventions only when there is imminent danger of injury, and only when imposed by trained staff;
    * Outlaw mechanical restraints, such as strapping kids to chairs, and prohibit restraints that restrict breathing;
    * Require schools to notify parents after incidents when restraint or seclusion was used;
    * Call on states, within two years of enactment, to establish their own policies, procedures, monitoring and enforcement systems to meet these minimum standards;
    * Encourage states to provide support and training to better protect students and prevent the need for emergency behavioral interventions; and
    * Increase transparency, oversight and enforcement tools to prevent future abuse.

The Education and Labor Committee plans to mark up the bill early next year.

Miller first requested the GAO investigation in January 2009, after the National Disability Rights Network released a report highlighting these abuses. The GAO unveiled its findings at an Education and Labor Committee hearing in May.

MD Loses $3 Million in Federal Aid & Impacts Waiting List

Friday, Dec. 4, 2009
Maryland loses $3 million in federal aid
Advocates worry about waiting list for disabled; hearing set for Tuesday

by Sean R. Sedam | Staff Writer – Gazette.net

An ongoing makeover to a list of developmentally disabled individuals waiting for state services has advocates fearing that people in need, some of whom have waited two decades, will be removed from the roll.

The Developmental Disabilities Administration is conducting a review to determine which individuals on the list are in most urgent need of services.

"It's our understanding that a large number of people will be taken off the list," said Laura Howell, executive director of the Maryland Association of Community Services.

That worries service providers, said Cristine Marchand, executive director of The Arc of Maryland.

When individuals come off the list "they disappear," she said. "And they're the silent majority."

The agency's review of the list, which had grown by May to include 18,928 names, was described in a 45-page audit report released Tuesday.

State auditors found that the agency did not claim $3 million in federal reimbursements that Maryland was eligible to receive and failed to recoup $3.6 million that it overpaid to service providers.

The audit also found that the disabilities administration paid contractors for services for people who had died, did not properly track Medicaid eligibility and had inadequate data systems in place that compromised security.

The legislature's Joint Audit Committee will hold a hearing on the audit at 1 p.m. Tuesday in Annapolis.

DDA Executive Director Michael S. Chapman declined to comment on details of the audit report until after the hearing, but said that the agency welcomed the scrutiny, even if it did not agree with all 14 findings.

The agency, in a response to the audit findings, said it could not recoup $911,000 of the federal reimbursement because of a two-year statute of limitations for claims. DDA was able to recover more than $546,000, according to the response.

Despite the millions that auditors claim DDA left on the table at a time when services for the disabled have been slashed by $29 million this year alone, advocates said that their worry lies more with the future of the waiting list.

The agency began sending letters to families on the waiting list in October 2008 in order to assess their needs, Chapman said. The agency plans to complete its review by April.

Caroline Munro, 15, has been on the waiting list since October 1999. With cerebral palsy and mental disabilities she is nonverbal and wheelchair-bound.

Her mother, Beth Munro, would like DDA funding for a roll-in shower in their Rockville home. But it cannot be installed unless square footage is added to the bathroom, something DDA will not pay for and Munro cannot afford.

Other services, such as access to an after-school program, could have made it possible for Munro to work full time. As a single mother, she needs to be home when Caroline returns from Richard Montgomery High School.

"I think about what our lives could've been like had we had supports, particularly, just respite," she said. "Perhaps I would've been able to afford to do some of the home modifications myself."


CLASS ACT clears hurdle in Senate healthcare bill debate

From McKnight's Long Term Care News:

An attempt to kill off the Community Living Assistance Supports and Services (CLASS) Act was thwarted Friday.

The long-term care and disability insurance program remained in the Senate healthcare bill Friday afternoon as the Senate voted 51-47 to defeat an amendment proposed by Sen. John Thune (R-SD). According to the Senate's Web site, the Thune amendment would “eliminate new entitlement programs and limit the government control over the health care of American families.” The amendment considered the CLASS Act, which would pay out a benefit to enrollees in the event of a disability, an entitlement program. The CLASS Act would reduce the deficit by $72 billion from 2010 to 2019, according to the Senate bill. The total bill is projected to reduce the deficit by $130 billion during that time.

As of press time, Sen. Ben Nelson (D-NE) had not yet introduced an amendment similar to Thune's that would remove the CLASS Act from the Senate bill.

The Arc's Car Donation Program in The NonProfitTimes

The NonProfitTimes - December 1, 2009
Car Donation Programs Rev-up, Some Are Clunkers
By Tom Pope

The Arc of the United States (ARC) is defying the trend of slacking activity in car donation programs. The 60-year-old civil rights organization just started a car program about a year ago while other programs face 30-percent declines from the economy.

“We’re beginning to see some growth with 90 chapters that are bringing in 30 cars a month totally,” said Trudy Jacobson, chief development and marketing officer for The Arc.

Not all chapters have that much success, and only 10 are fully active. “The Twin Cites had 22 cars in 15 days and that shows us the potential,” she said.

ARC represents people with intellectual and development disabilities through 730 local grassroots chapters.

Jacobson said the economy was partly responsible for donors in general slowing down their car contributions. “If you follow all the IRS guidelines, you have to have a donor in a certain tax bracket with a car at a certain level to gain a deduction,” she said.

ARC is “winning no matter what,” she said. It works with another nonprofit that manages the operation and handles the IRS paperwork.

The nonprofit manager has the staff for a plug and play program with an 800 number so anyone across the county can call and immediately be placed in a call center that feeds the information to the local level.

The Internal Revenue Service (IRS) became an obstacle to donors in 2004 when the American Jobs Creation Act changed the rules for contributions of vehicles. Before January 1, 2005, donors could claim a deduction equal to the fair market value. With the law, donors can only deduct the amount of the sold vehicle. Car donations got on the government’s hit list because it found examples of large discrepancies between a market value and actual sales price. According to the IRS, amounts donors claimed for these gifts dropped by more than 80 percent between 2004 and 2005. According to the IRS’s Statistics of Income Bulletin of Summer 2009 and the Spring 2008 car donations were 297,000 in 2006, down from 900,891 in 2005.

“We know we’re following the cleanest way to deal with the IRS,” Jacobson said.

ARC uses the Melwood Training Center, in Upper Marlboro, Md., to operate the functions. Melwood, a job training nonprofit, operates a donation program in the Washington, D.C. area. 

“Melwood makes sure the donor gets the IRS paper work Schedule 1040 and the Form 8283, which has to be attached,” she said. “We’d prefer to make less money as long as we make sure all the forms are correct.”

Other vendors might not provide the paperwork. “Many programs might not be aware of the IRS paperwork,” she said. “When a bill of sale goes through, the manager sends back the paperwork so donors know exactly what is needed to be sent.”

ARC has set rates through Melwood of a flat fee of $75 per car to pick up and manage the operation. This differs from most vending contracts that allow outside vendors to manage the operation. “We get approached from other vendors and those costs are so much higher that the chapters couldn’t afford it,” she said. “Anything in a percentage basis wouldn’t be in the donor’s interest.”

The current law allows donors to continue with a deduction of the fair market value if the charity uses the vehicle before selling it, fixes it before the sale, or gives it to a needy individual.

Such restrictions resulted in a 38-percent drop in cars for 2005 for Volunteers of America (VoA), based in Alexandria, Va. The program that handled about 80,000 cars in 2004 now gets 25,000 cars a year.

“We haven’t had a rebound from that time,” said Jim Hartman, vice president of Enterprise Programs for VoA. “From ‘07 we’re down about 12 percent.”

The federal Cash for Clunkers Program took approximately 677,000 cars off the road, according to The IRS. “Those were our typical donations,” he said. “We think there will be a six- to 12-month impact because those people who would have bought a new car were the ideal donors.”

Car donation programs depend on a high quality car that makes up for those fit only for the scrap heap. Those cars were donated because of the tax deduction.

“Now sometimes the quality isn’t there so that the towing and the cost of selling the vehicle becomes an obstacle,” he said. Add to that the problem that the price for salvage has plummeted for the past three years. “We were getting $600 for salvage and salvage guys were coming to the auction bidding against each other,” he said. “Now that has softened a bit and the same cars are bringing in only $100 to $200.”

VoA runs auctions and other times goes through auction houses. Those places are suffering too, according to Hartman. The shortage of cars going to the auction because of the clunker program means that 677,000 used car trades will not filter down to the auctions.

“We continue to advertise aggressively,” he said. “We want to counter balance the bad economy, although it’s a complicated balance between spending and keeping the program running.”

The Society of St. Vincent de Paul in New York City is evolving into a national program. “We’re trying to advertise more instead of being an independent program,” said Munaa Shariff, transportation program manager for the Atlanta Council. “Next year we hope to have more television ads because the small independent organizations can’t afford to do much.”

The Atlanta Council handles about 120 cars a year, down about 40 percent from when the changes went into effect.

“We don’t have an online program,” she said. “With the national effort, we will have more online ability and third party help.”

Presently, the outreach happens through small newspapers. Targeting the demographic to find the higher quality car doesn’t work well. “We have tried to use demographics to get better cars with our database,” she said. “We do not see any pattern outside of people in the suburbs.”

While many programs are shuffling to survive, Kars-4-Kids in Lakewood, N.J., has seen a sharp increase in donation during the past four years.

“That could be because we have grown now to 49 states,” said Clifford Meth, vice president of communications for the nonprofit. “We’re stronger in states with more affluent areas.”

Places with a higher unemployment usually means that people are holding on to their cars.

Kars anticipated a negative impact from Cash for Clunkers. “We didn’t see a drop off,” he said. “There has been almost a zero impact although it could hit in some months.”

The guarantee of a $500 deduction for donors means something to many people, according to Meth. “This comes down to a donor who has a vehicle in the driveway who is thinking about giving it away or has a rust bucket taking up space,” he said. “Instead, they could have a vacation voucher and feel good by donating.”

Kars’ increase has been steady during the past 10 years with more than a 10 percent rise a year for the past four years.

“Car donation is still a viable way for a charity,” he said. “We’re giving people the opportunity to be part of the giving of America -- that old car that is a pain in the neck could help a charity.

The Arc of the United States Moves to the Nation's Capital!
FOR IMMEDIATE RELEASE                               Contact:  Laura Hart
December 2, 2009                                                   Director of Media Relations

The Arc of the United States Moves to the Nation’s Capital

The Arc of the United States (The Arc) is proud to announce the relocation of its national headquarters to Washington, D.C. in December, 2009.  The national staff of The Arc is joining the policy staff of The Arc in its new offices at 1660 L Street, NW after a decade in Silver Spring, MD.  The Arc is the nation’s leading advocacy organization for people with intellectual and developmental disabilities and their families.

“Our relocation to Washington represents another exciting moment for this organization which is literally and figuratively on the move,” commented Peter V. Berns, Chief Executive Officer of The Arc.

“This past year has seen forward movement within The Arc – from developing a strategic plan, receiving a $3 million grant from Walmart, our rebranding initiative and more – so our move to Washington continues that momentum,” Berns said.

The offices at 1660 L Street are in the heart of the nation’s capital and located just blocks away from the White House.  The building also houses United Cerebral Palsy and other disability rights organizations.

“The governmental affairs arm of The Arc has been separated from the national offices of The Arc for more than 40 years.  The public policy team looks forward to having both offices separated by only a few floors versus several miles, which will lead to a richer and more coordinated approach,” said Paul Marchand, Staff Director for the Disability Policy Collaboration (DPC), a partnership between The Arc and United Cerebral Palsy said.

New Address:  1660 L Street, NW, Suite 301, Washington, D.C.  20036.  The Arc’s new main switchboard phone number will be:  202.534.3700. Our toll free number remains the same:  800.433.5255.  Please check our website for additional staff information.

The Arc of the United States (The Arc) is the largest community based nonprofit advocating on behalf of and serving people with intellectual and related developmental disabilities, including autism, and their families.  Together with our current network of 756 state and local chapters and members, we improve systems of supports and services; connect families; inspire communities and influence public policy.  For more information, please visit www.thearc.org
The Arc of NJ Fights Budget Cuts

A plea for the most vulnerable

Tuesday, December 01, 2009

TRENTON -- With his twin daughters running around his feet, pulling on his pant-legs to gesture up at him in sign language, Robert Hage, of Pennington, made a personal appeal to State Treasurer David Rousseau at the Statehouse yesterday: his girls would be just two of the more than 160,000 who would be affected if the state cuts funding for developmental disability services.

With the state facing an unexpected budget gap of $1 billion this year, Gov. Jon Corzine is expecting department heads to come up with $400 million in spending cuts.

Officials from the Arc of New Jersey, an organization committed to enhancing the quality of life of children and adults with intellectual and developmental disabilities, fear the cuts may come in the form of slashing funding for the state's Division of Developmental Disabilities, which operates under the auspices of the Department of Human Services.

Hage's 6-year-old daughters, Maya and Anika Adrian-Hage, who attend the Marie Katzenbach School for the Deaf in Ewing, live with an "unknown genetic syndrome" that has left them with myriad developmental disabilities.

Along with representatives from the Arc of New Jersey, Hage and his daughters presented Rousseau with a "basket of hope" containing pictures and stories from families, like the Hages, who rely on the state for help in dealing with developmental disabilities.

"They're 6, but they function at more of a 3-year-old type of (intellectual) level," Hage said of his daughters.

Just one of the ways the disability presents itself is through a condition known as hypotonia, a muscle deficiency that leaves them weaker than many of their peers.

"In the beginning, they couldn't sit up, they couldn't turn the page of a book, they couldn't do anything," he added.

Hage, who runs a financial services company out of his home, said it was only through the aid of services provided and largely funded by the state that his daughters' conditions improved over the years.

Through the state, Maya and Anika receive occupational, physical, speech and feeding therapies, plus nursing care.

"They've only done better because of the services they've received," he said. "It was all the hard work of the therapists that was able to help them to develop muscle tone and coordination that lets them walk around."

Even with the help from the state, Hage's wife has had to quit her job to help care for the girls.

According to Tom Baffuto, the executive director of the Arc of New Jersey, people living with developmental disabilities in the state are the beneficiaries of about $800 million worth of services annually.

Baffuto said that the state had threatened cuts to developmental disability services last year, but they were eventually avoided.

"We put out a major outcry and got away with no cuts," Baffuto said. "Any new cuts would have a dramatic impact on all the thousands of families that rely on the Division of Developmental Disabilities for services."

"The most vulnerable populations are always the ones we want to protect," Rousseau said. "This will always be at the top of the list."

But even with Rousseau's assurances, Baffuto said his organization would maintain a full-court press to make sure this vulnerable population remained under the state's wing.

"He understands the needs that these families have. The governor understands the problem," Baffuto said, "but he didn't make any guarantees."

"We depend and rely on these services so dramatically," Hage added. "We desperately need to make sure there's no cuts."

Contact Matt Fair at (609) 989-5707 or at mfair@njtimes.com.
©2009 Times of Trenton
© 2009 NJ.com All Rights Reserved.
Op Ed by Peter Berns: U.S. Gov't Should Stop Using the Word 'Retarded'

U.S. government should stop using the word 'retarded'
By Peter V. Berns
November 29, 2009

Does terminology matter? Turns out it matters quite a lot, especially if it's about a person's intellectual disability.

This is why the U.S. Senate is considering a bill to replace the term "mental retardation" and "mentally retarded" with "intellectual disability" and "individual with an intellectual disability" in federal health, education and labor policy statutes. Sen. Barbara Mikulski, Democrat of Maryland, introduced "Rosa's Law" on Nov. 17. Senator Mikulski's bipartisan bill would have far-reaching effects because the term is used to establish eligibility for many federal benefits and services.

The bill is very important for people with intellectual disabilities, who understand that language plays a crucial role in how they are perceived and treated in society.

Unfortunately, there is a lengthy history of oppression, mistreatment and abuse of our citizens with limited intellectual functioning. People with intellectual disabilities have been imprisoned in institutions, suffered forced sterilization and have often been - and continue to be - excluded from schools, the workplace and society at large. The medical terms that have, historically, been used to describe them (imbecile, moron, idiot, and currently, mentally retarded) have become common terms of derision and ridicule.

Sadly, the same general enlightenment that now mostly spares racial and ethnic minorities from the cruelty of pejorative words has not yet been attained as it relates to people with intellectual disabilities. It is no longer socially acceptable to mock people of African-American, Latino or Asian descent, for example. But the words "retard" and "retarded" are still widely used and accepted as an insult in our homes and schoolyards and on our movie and TV screens.

Maybe people are simply unaware that intellectual disabilities result from genetics, prenatal alcohol exposure, poor nutrition, injury, illness and other unknown causes. Or could the public at large be so callous that they don't care that people with intellectual disabilities are hurt and shamed by demeaning references? Is there fundamental disregard for the well being of people with intellectual disabilities worldwide?

Perhaps people are not aware of how children with Down syndrome in some countries are tied to their beds for years in filthy institutions (also true in the U.S. for decades until the 1970s); that an estimated 80 percent of girls and women in this country with intellectual disabilities are sexually assaulted; and that the testimony of crime victims - in rare instances of reporting and prosecution - often is dismissed because of intellectual disability.
We must stand up for our citizens with intellectual disabilities. Senator Mikulski's bill is a necessary step to help stop the use of degrading terminology. By introducing the word "disability" into the parlance, perhaps the global society will begin to understand the legitimacy of the condition and treat those living with it in a just and humane manner.

Peter V. Berns, a Baltimore resident, is executive director of The Arc of the United States.Copyright © 2009, The Baltimore Sun

The Arc of MA Opposes Budget Cuts
Cuts stun disability advocates
Sat Nov 21, 2009, 12:04 PM EST- The Reading Advocate

BOSTON — Just weeks after meeting with disability advocates and promising to protect their essential services, Governor Patrick announced recently that he will cut critical long-term disability services to fill a $300 million MassHealth budget gap.

 “We are extremely disappointed at this turn of events,” said Leo Sarkissian, executive director of The Arc of Massachusetts, the largest disability advocacy group in the state. “If they follow through on these cuts, it will compromise the safety net for many thousands of the state’s most disabled individuals and their families.

“Governor Patrick is a good friend to us, and we remain hopeful that he will intervene to stop these cuts from being followed through on,” Sarkissian added.

Cuts to long-term services that affect people with disabilities include: day habilitation, adult dental restorative services, personal care attendant services, podiatry services and adult foster care.

For two weeks last month, hundreds of people with disabilities, their families and caretakers, camped out in the Governor’s lobby to hold a “Vigil to save our Safety Net.” The Governor met with vigilers almost daily. On Oct. 29, when he made his budget announcement, he spared major cuts to disability services, stating that his decisions “reflect the values of the citizens of the Commonwealth by protecting the most vulnerable in our state.” He was roundly lauded in the disability community.

“There is no doubt that the governor’s actions last month took courage, so it is doubly upsetting that he has decided to put people with disabilities in harm’s way now,” said Arc president Frederick Misilo. “We believe these cuts will hurt more than the Governor realizes, and hope that once he does understand, he will reconsider.”

The Arc and our partner agencies are considering public actions to again remind the Governor of the impacts and of his pledge.

The Arc, the largest advocacy organization working on behalf of individuals with intellectual and developmental disabilities, represents 180,000 individuals and families in Massachusetts. It has 21 chapters across the state and works with 60 other organizations to advance services for individuals with disabilities.
What's In a Name? Legislation Would End Use of the Term "Mental Retardation"

Los Angeles Times - Health

November 19, 2009 | 11:19 am

What’s In a Name? Legislation Would End Use of the Term “Mental Retardation”

We health bloggers and reporters think about words a lot and care about using the right ones. So we were interested when we heard that a legislative proposal offered in the U.S. Senate recently would outlaw further use of the terms "mentally retarded" or "mental retardation" from federal statutes and policy papers in the area of health, education and labor.

The proposed measure would replace those terms with "intellectual disability" and "individual with an intellectual disability."

The Arc of the United States — the nation's largest and most active advocacy group for those with intellectual and related developmental disabilities — calls the terms "mental retardation" and "mentally retarded" "outdated" and "stigmatizing." The group applauds the measure, which was proposed by Sen. Barbara A. Mikulski (D-Md.), and says it's high time that federal language was updated.

" 'Retard,' 'retarded' and 'retardation,' once accepted medical terms, are now used only to insult and demean people," said Peter V. Berns, chief executive of the Arc, in a statement supporting Mikulski's proposal. He added, "Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil rights."

The Centers for Disease Control and Prevention already use the updated term, as does the Office of the President — to which the Committee for People With Intellectual Disabilities reports. But some landmark laws — including the Individuals With Disabilities Education Act (IDEA), the Higher Education Act and the law known as No Child Left Behind — still use the terms.

The measure replicates a law recently passed by the Maryland State Assembly. As they deliberated, state lawmakers heard from 13-year-old Nick Marcellino, whose sister, Rosa, has an intellectual disability. "Some say we shouldn't worry about the words, just the way we treat people. But when you think about it, what you call people is how we treat them. If we change the words, maybe it'll be the start of a new attitude toward people with intellectual disabilities."

Mikulski has dubbed her measure Rosa's Law, in honor of Nick's sister.

There are 7 million people living with intellectual and/or developmental disabilities in the United States, and the origins of their disabilities are legion, ranging from birth injury, illness, genetic defect (a term that some may also challenge) and environmental factors. A recent post here at Booster Shots talked about a raft of medications now under study in the treatment of Down syndrome and about a survey that found that 60% of parents of offspring with the disorder would likely take a pass on such a treatment if it became available.

So, is it political correctness run amok, or is it a group's right of self-determination to stipulate (by law, no less) how they should be referred to? There are plenty of precedents to point to. But some will resist being dictated to when it comes to language.

— Melissa Healy

The Arc Supports Federal Bill to Fight Use of the Term 'Mental Retardation'

Contact: Laura Hart, Director of Media Relations
Phone: (301) 565-5462
Email: hart@thearc.org

The Arc of the United States Supports the U.S. Senate’s Introduction of Federal Legislation to Use the Term “Intellectual Disability”

Silver Spring, Maryland – The Arc of the United States (The Arc) supports and applauds today’s introduction of “Rosa’s Law,” a bipartisan bill introduced by U.S. Senators Barbara Mikulski (D-MD) and Michael Enzi (R-WY). Modeled after a recently enacted law in the state of Maryland, this legislation would substitute the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes.

The term “intellectual disability” covers the same population of individuals who were previously diagnosed with the term “mental retardation,” and “mentally retarded.” Therefore, the change in terminology would in no way alter the eligibility requirements for services and supports.  

“This bill is very important for people with intellectual disabilities who understand that language plays a crucial role in how they are perceived and treated in society and are actively advocating for terminology changes in federal and state laws.  ‘Retard,’ ‘retarded’ and ‘retardation,’ once accepted medical terms, are now only used to demean and insult people,” stated Peter V. Berns, Chief Executive Officer, The Arc of the United States (The Arc). “The Arc, believes that changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.”

Read Senator Mikulski’s statement to the U.S. Senate upon introduction of the bill at: http://mikulski.senate.gov/record.cfm?id=319975&.

While The Arc applauds the U.S. Senate’s introduction of “Rosa’s Law,” it is only the first step in a lengthy process towards enactment.  The Arc will continue to work to ensure the bill’s introduction in the U.S. House of Representatives and its progression through the entire legislative process.

The Arc is the largest community-based nonprofit working through a network of 732 state and local chapters and their members to advocate on behalf of and serve people with intellectual and related developmental disabilities and their families.  The Arc works to improve systems of supports and services, connect families, inspire communities, and influence public policy.  It is the only organization that supports persons from pre-natal care through end-of-life issues and over 100 diagnoses that may include the effects of intellectual and developmental disabilities including Autism.  For more information, please visit www.thearc.org.

# # #
The Short Life of a Diagnosis

The Short Life of a Diagnosis
Published: November 9, 2009, The New York Times

THE Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is the bible of diagnosis in psychiatry, and is used not just by doctors around the world but also by health insurers.

Changing any such central document is complicated. It should therefore come as no surprise that a committee of experts charged with revising the manual has caused consternation by considering removing Asperger syndrome from the next edition, scheduled to appear in 2012. The committee argues that the syndrome should be deleted because there is no clear separation between it and its close neighbor, autism.

The experts propose that both conditions should be subsumed under the term “autism spectrum disorder,” with individuals differentiated by levels of severity. It may be true that there is no hard and fast separation between Asperger syndrome and classic autism, since they are currently differentiated only by intelligence and onset of language. Both classic autism and Asperger syndrome involve difficulties with social interaction and communication, alongside unusually narrow interests and a strong desire for repetition, but in Asperger syndrome, the person has good intelligence and language acquisition.

The question of whether Asperger syndrome should be included or excluded is the latest example of dramatic changes in history of the diagnostic manual. The first manual, published in 1952, listed 106 “mental disorders.” The second (1968), listed 182, and famously removed homosexuality as a disorder in a later printing. The third (1980) listed 265 disorders, taking out “neurosis.” The revised third version (1987) listed 292 disorders, while the current fourth version cut the list of disorders back to 283.

This history reminds us that psychiatric diagnoses are not set in stone. They are “manmade,” and different generations of doctors sit around the committee table and change how we think about “mental disorders.”

This in turn reminds us to set aside any assumption that the diagnostic manual is a taxonomic system. Maybe one day it will achieve this scientific value, but a classification system that can be changed so freely and so frequently can’t be close to following Plato’s recommendation of “carving nature at its joints.”

Part of the reason the diagnostic manual can move the boundaries and add or remove “mental disorders” so easily is that it focuses on surface appearances or behavior (symptoms) and is silent about causes. Symptoms can be arranged into groups in many ways, and there is no single right way to cluster them. Psychiatry is not at the stage of other branches of medicine, where a diagnostic category depends on a known biological mechanism. An example of where this does occur is Down syndrome, where surface appearances are irrelevant. Instead the cause — an extra copy of Chromosome 21 — is the sole determinant to obtain a diagnosis. Psychiatry, in contrast, does not yet have any diagnostic blood tests with which to reveal a biological mechanism.

So what should we do about Asperger syndrome? Although originally described in German in 1944, the first article about it in English was published in 1981, and Asperger syndrome made it only into the fourth version of the manual, in 1994. That is, the international medical community took 50 years to acknowledge it. In the last decade thousands of people have been given the diagnosis. Seen through this historical lens, it seems a very short time frame to be considering removing Asperger syndrome from the manual.

We also need to be aware of the consequences of removing it. First, what happens to those people and their families who waited so long for a diagnostic label that does a good job of describing their profile? Will they have to go back to the clinics to get their diagnoses changed? The likelihood of causing them confusion and upset seems high.

Second, science hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition.

We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily.

Simon Baron-Cohen, the director of the Autism Research Center at Cambridge University, is the author of “The Essential Difference.”

Op-ed: The Arc of Greater Tarrant County
Poverty and Disability Greatly Correlated, New Study Shows

Poverty and disability greatly correlated, new study shows

MCT News Service, November 4, 2009

Hard economic times are even harder when you have a disability. But poverty and disability don't have to be synonymous if we design our policies well.

A new report from the Center for Economic and Policy Research (a Washington-based think tank) titled "Half in Ten" states that almost 50 percent of working-age adults who experience poverty for at least a 12-month period have one or more disabilities.

People with disabilities, the report says, account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents.

The extra costs associated with living with a disability such as purchasing expensive equipment like wheelchairs and catheters or obtaining specialized medical attention keep many disabled people and their families in poverty, the report notes.

The report also astutely observes that direct care workers who assist people with disabilities in their homes and communities are often themselves in poverty. The median income for the 3 million direct care workers in the United States is only $17,000 a year, the report says.

Fortunately, there are several steps we can take to ensure that disability doesn't spell poverty.

The first step is universal health care. The report stresses "the fundamental importance of health care reform, especially the provision of universal coverage, to anti-poverty efforts." The lack of good health insurance, the report says, "is one of the most significant drivers of income poverty and severe disadvantage." Another important step is for the United States to adopt "the kinds of paid-sick-day and paid-sick-leave policies that are already in place in all other similarly wealthy nations."

At least 40 percent of private sector workers in the United States have no paid sick days or leave, the report says.

Third, we should ease the ridiculously harsh restrictions on assets and earnings imposed on those receiving Social Security Disability Income. The current Social Security policy basically requires you to impoverish yourself before you can get disability aid from the government.

And, fourth, we should pay a decent wage to the health care providers who do such a superb job in tending to the needs of the disabled.

It's clear that the current economic hardship is being made much worse for many people than it needs to be due to the disregard politicians and policymakers have for the well-being of Americans with disabilities and those who work in providing them with assistance.

It's time for that to change.


Mike Ervin is a Chicago-based writer and a disability-rights activist with ADAPT (www.adapt.org). He wrote this for Progressive Media Project, a source of liberal commentary on domestic and international issues; it is affiliated with The Progressive magazine. Readers may write to the author at: Progressive Media Project, 409 East Main Street, Madison, Wis. 53703; e-mail: pmproj@progressive.org; Web site: www.progressive.org. For information on PMP's funding, please visit http://www.progressive.org/pmpabout.html#anchorsupport.

This article was prepared for The Progressive Media Project and is available to MCT subscribers. McClatchy-Tribune did not subsidize the writing of this column; the opinions are those of the writer and do not necessarily represent the views of McClatchy-Tribune or its editors.

(c) 2009, Mike Ervin

Distributed by McClatchy-Tribune Information Services

Copyright © 2009, Tribune Media Services

Clinical Tests Begin On Medication To Correct Fragile X Defect

Clinical Tests Begin On Medication To Correct Fragile X Defect

ScienceDaily (Nov. 4, 2009) — NIH-supported scientists at Seaside Therapeutics in Cambridge, Mass., are beginning a clinical trial of a potential medication designed to correct a central neurochemical defect underlying Fragile X syndrome, the most common inherited cause of intellectual disability. There has to date been no medication that could alter the disorder's neurologic abnormalities. The study will evaluate safety, tolerability, and optimal dosage in healthy volunteers.

The work is the outcome of basic research that traced how an error in the fragile X mental retardation gene (FMR1) leads to changes in brain connections, called synapses. The changes in turn appear to be the mechanism for learning deficits in Fragile X syndrome. The new trial tests Seaside Therapeutics' novel compound, STX107, that selectively and potently targets the synaptic defect.

Thomas R. Insel, M.D., director of the National Institute of Mental Health, said, "This project is the culmination of years of fundamental research, first identifying the genetic mutation and later deciphering the biochemical consequences of this mutation. Now, with the initiation of this first clinical study, we move one step closer to understanding how this novel candidate may play a critical role in improving the lives of individuals with Fragile X Syndrome."

Randall Carpenter, M.D., president and chief executive officer of Seaside Therapeutics, and Mark Bear, Ph.D., Seaside's scientific founder, are leading the research. Dr. Bear is a Howard Hughes Medical Institute investigator and a professor of neuroscience at the Massachusetts Institute of Technology, Cambridge, Mass.

The National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institute of Neurological Disorders and Stroke (NINDS) have provided grant support. Private foundations providing funding include the advocacy groups Autism Speaks and FRAXA Research Foundation.

Fragile X syndrome is the most common inherited cause of intellectual disability, affecting an estimated 1 in 4,000 males and 1 in 6,000 females. The syndrome causes a range of developmental problems, including learning disabilities and cognitive impairment. People with Fragile X syndrome may have anxiety and attention deficit hyperactivity disorder. About one-third of males with Fragile X syndrome also have autism or autistic-like behavior that affects communication and social interaction. Usually, males, who have only a single X chromosome, are more severely affected than females.

People with Fragile X have DNA mutations in the FMR1 gene that, in effect, turn off the gene. Research in recent years by Dr. Bear and colleagues has identified the molecular consequences of this silencing of FMR1. Normally, the protein product of the FMR1 gene acts to dampen the synthesis of proteins at synapses that are stimulated via a specific class of receptors on brain cells--metabotropic glutamate receptors (mGluRs). Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections do not develop normally.

This basic research provided the basis on which to develop medications that could correct the defect.

The current study will focus on a compound, designated STX107, that selectively inhibits one type of mGluR receptor, mGluR5. Evidence in mice with Fragile X-like symptoms suggests that reducing levels of mGluR5 can restore normal synaptic protein synthesis and improve function.

The initial phase 1 study of STX107 will involve healthy volunteers. If results suggest that the medication is safe and tolerable, the study will progress to a phase 2 test of dosage and efficacy in adults with Fragile X syndrome. If STX107 shows promise in adults, the compound will be assessed for pediatric safety (with funding from the Best Pharmaceuticals for Children Act [http://bpca.nichd.nih.gov/about/index.cfm] through NICHD) prior to initiating clinical trials in children.

Adapted from materials provided by NIH/National Institute of Mental Health, via EurekAlert!, a service of AAAS.

A Powerful Identity, a Vanishing Diagnosis

A Powerful Identity, a Vanishing Diagnosis

The New York Times - November 3, 2009

It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.

In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.

Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.

Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”

The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.

Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.

Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.

Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.

The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.

Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.

The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.

And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.

A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”

Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.

In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.

Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.

Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.

The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”

The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”

Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.

In interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.

“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”

But some younger people involved in the growing autism self-advocacy movement see things differently.

“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”

All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.

Correction: An earlier version of this article incorrectly said Temple Grandin was a professor at the University of Colorado.
The Arc of MA Applauds Smaller State Budget Cuts

Patrick aide: State to cut at least 1,000 jobs

October 29, 2009 02:39 PM
By Matt Viser, Boston Globe Staff

WORCESTER -- At least 1,000 state jobs will be eliminated and another 1,000 are in jeopardy unless unions agree to concessions as the state moves to close a $600 million budget gap, Governor Deval Patrick's top fiscal aide said today.

Administration and Finance Secretary Jay Gonzalez said the jobs in jeopardy could be saved if state employee unions agree to $35 million in concessions. The savings would be achieved through nine unpaid furlough days and officials are hoping to get agreement from the unions by Dec. 1, he said.

Gonzalez's remarks came after a speech and news conference today in which Patrick announced that up to 2,000 jobs could be cut as part of a plan to address the budget gap.

Earlier this month, Patrick had warned that jobs could be eliminated unless unions agreed to concessions. "So far they have not agreed. While we will keep talking, we cannot talk indefinitely," he said.

Patrick emphasized today that, while making cuts in other areas, he would fully protect the funding sent by the state to cities and towns for schools and other services.

"We will not cut our record investment in our students and our schools. We will not shortchange our children's future. … We will not cut local aid. Local communities are the front line of both our economy and our social life and they are struggling as it is," he said.

Patrick said he would move to make $352 million in cuts across state government, implementing $277 million in cuts across the executive branch and seeking authority to make $75 million in additional cuts in other branches of government, including the Legislature, the judiciary, and county sheriffs.

Patrick also said he would fill part of the budget gap with $60 million in federal stimulus money. Other money-saving measures included: a $5 million cut in the Quinn Bill education program for police and asking state managers to take nine unpaid furlough days.

“The Quinn bill... is a program we must begin to phase out," Patrick said. He has asked the Massachusetts Coalition of Police and his secretary of public safety, Kevin Burke, to co-chair a commission to recommend a different program to encourage police to earn higher education degrees.

Patrick is also today filing legislation to eliminate Bunker Hill and Evacuation days as paid state holidays in Suffolk County, which he called “traditions whose time has passed" as the crowd applauded at the New England Business Expo at the DCU Center in Worcester.

It is the fourth time within a year that Patrick has been forced to make emergency cuts because tax revenues came in lower than expected. According to the governor, tax revenues for the first quarter of the fiscal year came in $212 million lower than expected.

City and town officials were concerned that the budget cuts could result in slashes to the state's aid to them, which has already resulted in a $724 million drop, or 12 percent drop in funding they receive, compared with the previous fiscal year.

With people and businesses earning and spending less in a faltering economy, the state government ends up collecting less taxes, which are vital to providing services. Patrick said the state and the nation were "in the midst of the worst economic recession since the Great Depression."

Advocates for the disabled applauded the governor's decisions to make a smaller cut than they feared in human services, and came to Worcester to show their support.

“We’re psyched,” said Leo Sarkissian, executive director of The Arc, which advocates for 180,000 individuals and families with intellectual and developmental disabilities. “No one likes a cut, but this is good. Families and advocates are thrilled.”

Cuts to human services ended up being $82 million, although advocates had expected those cuts to be as high as $300 million.

“It’s kind of like you thought you would get capital punishment, and you only got 20 years,” said Frederick Misilo, president of The Arc.

Patrick’s cuts to human services included $7.7 million from developmental disability support. As recently as last week, officials feared disability services would lose as much as $60 million in services.

“Our governor showed us he has a compassionate heart and makes his decisions based on the values of all of the people of the Commonwealth,” Gary Blumenthal, executive director of the Association of Developmental Disabilities Providers, said in a statement. “We know Governor Patrick was faced with impossible choices, but he looked us in the eyes, listened to our pleas, and responded accordingly. This was a courageous decision.”

Advocates for the disabled have held a two-week vigil outside the governor’s office in an effort to make their cause fresh in his mind as he made the cuts.
Matt Viser can be reached at maviser@globe.com.

Axelrod Remains Mindful of Daughter with Epilepsy

Axelrod remains mindful of daughter with epilepsy

(AP) – 1 day ago

WASHINGTON — White House presidential adviser David Axelrod says the demands of his job can sometimes be hard since he can't spend quality time with his daughter, who suffers from epilepsy.

In a broadc