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intellectual and related developmental disabilities — calls the terms "mental retardation" and "mentally retarded" "outdated" and "stigmatizing."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 Short Life of a Diagnosis
By SIMON BARON-COHEN
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.”

Garnett: Needs council will help those with intellectual, developmental disabilities
By RICHARD GARNETT
Special to the Star-Telegram Posted Saturday, Nov. 07, 2009

More than 100,000 children and adults in Tarrant County have intellectual or developmental disabilities (IDD). In fact, a child is born with autism, mental retardation, cerebral palsy or other intellectual and developmental disabilities every 12 hours in Tarrant County.

They are invisible to much of our community.

Families feel isolated and alone as they grapple with their loved one’s needs. Far too often we leave the families and caregivers of these 100,000 Tarrant County residents to figure things out for themselves with little or no meaningful support, not just from agencies but also from their friends and neighbors.

The parent of a child with disabilities struggles with lost dreams and fears of the future. As the child grows older, the challenges of adulthood and a confusing maze of rules, laws and poorly understood services take their toll.

In Tarrant County, as in many communities across Texas, a person with intellectual or developmental disabilities and their family members often are faced with the dual dilemmas of not knowing what services and supports are available and not knowing what questions to ask to learn about their options.

However, there is hope on the horizon. With the leadership, support and endorsement of Tarrant County Judge B. Glen Whitley and Fort Worth Mayor Mike Moncrief, the Intellectual and Developmental Disabilities Needs Council of Tarrant County was formed by The Arc of Greater Tarrant County and Mental Health Mental Retardation of Tarrant County. A Monday kickoff luncheon will bring together more than 100 agencies, groups, officials and professionals to mark this historic initiative.

Last Tuesday, Whitley and the Tarrant County Commissioners Court issued a proclamation stating their support and endorsement for the establishment of the IDD Needs Council. The court noted "the community is seeking to establish a vehicle to coordinate supports and services, establish anti-stigma initiatives and fulfill the need for public education and advocacy so as to meet the critical needs of inclusion and involvement for people with intellectual and developmental disabilities."

The proclamation concluded by urging "the citizens of Tarrant County to give their full support to the Council and its efforts toward enabling people with intellectual and developmental disabilities to live productive lives and achieve their potential, free of stigma and discrimination in the community."

The establishment of this partnership of individuals, family members, service providers, educators, advocates and policy makers will provide an opportunity for improving efficiency in service delivery and will be a forum for comprehensive community planning. What supports and services do we have and what do we need? How can a coordinated network of providers work smarter, not harder?

Many existing community services (child care, healthcare, leisure activities, etc.) could, with appropriate training and design, be available to children and adults with IDD. Most people with disabilities are looking for opportunities to participate in regular community life.

Solutions are not always dependent on more money. Sometimes creativity, innovation, collaboration and the determination to find solutions is the answer.

This groundbreaking initiative will work to ensure that all persons with IDD have access to services and support. The overarching goal of the IDD Needs Council is to assist in the development of a flexible, dependable, accessible and coordinated network of services and support that will:

Bring stakeholders together so that their efforts will be unified, coordinated, focused and more effective.

Identify community problems and recommend solutions that encompass the council’s vision.

Increase public understanding and acceptance of children and adults with IDD.

Promote opportunities for people with IDD to participate fully in the community

Is this a big challenge? Of course. However, we want to strive for a future when every parent knows that their children can be included in community life. We want to see that people with intellectual or developmental disabilities can access transportation, healthcare and employment as their fellow residents can.

Through getting to know people with intellectual disabilities, our community can discover that all people share similar hopes, dreams and goals.

Richard Garnett is the executive director of The Arc of Greater Tarrant County. richard.garnett@arcgtc.org

Poverty and disability greatly correlated, new study shows
baltimoresun.com

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.


ABOUT THE WRITER


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

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

The New York Times - November 3, 2009
By CLAUDIA WALLIS

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.

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

(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 broadcast interview Sunday, Axelrod said he's grateful that newly approved medication seems to be finally controlling the seizures of Lauren, 28, after many years of trial and error with other therapies. But he acknowledges it is still difficult to be away from Lauren, who lives at a home for the developmentally disabled in Chicago.


"It's been hard to explain to her. She doesn't understand why. She asks all the time, 'Why does Barack Obama need so much help?'" Axelrod said.


"There was a time when we have given our right arm for just a — a week of good days. And now, she has them consistently. So, you know, that's a big victory," he said.


Axelrod spoke in an interview with "60 Minutes" along with Lauren and his wife, Susan, who is president of the Chicago-based advocacy group CURE, or Citizens United for Research in Epilepsy.


The couple described the initial shock they felt when their 7-month-old daughter suddenly became limp and blue in her crib. When Susan Axelrod picked up Lauren, she immediately went into a seizure. The medical treatments at the time were limited, and so the Axelrods were forced to try 23 different medications and an unsuccessful brain surgery for their daughter by the time she was 18.


Their turmoil prompted Susan Axelrod to help start CURE to promote medical research.


Copyright © 2009 The Associated Press. All rights reserved.

Stedman Graham brings his nine steps to focus Arc activists
Breaking Down Barriers
Wednesday, October 21, 2009

By Tina Calabro/Pittsburgh Post-Gazette

As a parent raising a child who has cerebral palsy, I've become a believer in the value of attending conferences about disability issues.

Conferences are opportunities to get focused and energized, to not only find answers to questions, but to learn what questions to ask -- how systems operate, how to effect change, who are the leaders who will light the path.

Two national conferences are coming to Pittsburgh next month -- The Arc of the United States on Nov. 11 to 14 and TASH on Nov. 18 to 21. Both conferences are concerned with quality of life across the age span with an emphasis on people who have significant disabilities.

Both organizations had their start in the civil rights era, a tipping point for many Americans struggling with issues of equality and opportunity. Indeed, the names behind the acronyms for both groups are a remnant from that period -- ARC stood for the Association for Retarded Citizens; TASH was The Association for People with Severe Handicaps. TASH now uses only its acronym. The Arc substituted words for its acronym.

Both groups remain powerhouses of advocacy. In the early 1970s, the Pennsylvania ARC sued the commonwealth over the exclusion of children with disabilities from public schools. The successful outcome led directly to the federal Individuals with Disabilities Education Act.

Around the same time, TASH's founders called attention to deplorable conditions in institutions and campaigned for their closing. Today, TASH is a leading voice for the rights and inclusion of people with significant disabilities.

 Meetings information

• The Arc of the United States Convention, Nov. 11-14, David L. Lawrence Convention Center; www.thearc.org; 888-272-7229. ext. 460

• TASH Conference, Nov. 18-21, Westin Convention Center; www.tash.org; 202-540-9020

• Scholarships: Arc, 412-995-5000 ext. 515 or cdowns@achieva.info; TASH, 202-540-9015 or hkimmet@tash.org.

The Arc has tapped Stedman Graham as its keynote speaker. Mr. Graham is an author and motivational speaker, who is also well known as the "significant other" of Oprah Winfrey.

In a phone interview, Mr. Graham expressed his admiration for Arc's work and noted that his mother founded a chapter of the organization in the southern New Jersey town where he grew up.

Q: You have two siblings who have disabilities -- what will you share at the conference about your growing-up years?

Graham: Well, I'll talk about some of my experiences in terms of the issues that are similar to those that others deal with. It's part of my life, part of what got me here and part of my ability to have the determination and perseverance to keep going.

It certainly makes you work harder, and I'm more empathetic as a human being because of it. I have no tolerance for people who have all their faculties [but do not] take advantage of and appreciate what they have.

But [at the conference] I will speak more about how to develop an identity for yourself. It doesn't make a difference who you are, everyone has an identity that they can develop. If you don't know who you are, you're not going anywhere, I don't care if you're disabled, working in a job or in college.

And I want to stress the importance of caregivers taking care of themselves and making sure they do not neglect their development. I'll be talking about how you do that through [my] nine-step process.

Q: What is that process?

Graham: You first have to understand who you are, you have to develop an identity for yourself. That can be a family identity, a personal identity, a professional identity. Then you have to look at your life holistically so you can create as much balance as you can. You create work-life balance and build a life.

Then you create a vision for yourself and what you want your future to look like. Then, a plan. That's a daily plan, a weekly plan, a monthly plan, a yearly plan.

Then we talk about your guiding principles, your value system, your attitude and your ability to build relationships. Then, overcoming your fears, what obstacles you face, and how to get through those obstacles.

Step six is gaining the power to change not so much what happens to you but how you respond to it, how you get through it, how you keep a positive attitude.

Step seven is building your dream team. Step eight is getting the right information about what's important in your life. The last step is to commit to your vision and to improve your life every single day.

Q: You mention caretakers, but will you also be directing your message to people with disabilities?

Graham: Doesn't make any difference. The process is the same whether you are disabled, a caregiver, or whoever. People who are disabled need to understand what is possible for them, that we all have strengths and weaknesses.

Q: Your most recent book is "Diversity: Leaders not Labels." Disability rights advocates have been telling employers that disability, like race and ethnicity, is a component of diversity. Many people with disabilities prepare for jobs, then encounter a barrier when they can't get hired.

Graham: I think it's bigger than that. I don't think it's just that the marketplace doesn't want to hire people who are disabled. I think you have to focus on your strengths, get any additional training you need, and understand how the system works. ... You can't overcome the fact that someone is prejudiced, but you can figure out how to adjust to the circumstances and get the best out of it.

Tina Calabro writes on disability issues. Her e-mail address is tina.calabro@verizon.net.
Read more: http://www.post-gazette.com/pg/09294/1006994-114.stm#ixzz0UbFMD6OX

After eight years of the Bush administration using the power of the Justice Department to undermine civil rights laws, it is good to see the department applying one of those laws, the Americans With Disabilities Act of 1990. It has started a timely new initiative aimed at full enforcement of that law, which forbids unjustified isolation of the mentally disabled and requires that they be integrated into the wider community where appropriate.

The initiative is having its coming-out party in New York, where Justice Department lawyers are seeking to intervene in a closely watched federal lawsuit involving thousands of mentally ill people being held in privately run adult homes. A federal judge recently described them as “even more restrictive or ‘institutional’ than psychiatric hospitals” that they were intended to replace.

In a ruling last month, the federal judge, Nicholas Garaufis, painted a dismaying picture of adult “homes” that in no way complied with federal law and that were more like jails than houses. In these places, mentally ill people who did not present a danger to themselves or to others had little of the privacy, freedom or enriching activities that would help them develop full, independent lives.

That thousands of New Yorkers were still confined in this way is striking since the state already knows the right way to do it. New York is known nationally for vibrant, innovative housing developments where mentally ill people live successfully and independently while receiving mental health and other services from community-based groups.

The judge has already required the state to produce a plan for correcting this egregious situation with the warehousing of the mentally disabled. But in the letter announcing its intent to intervene, the Justice Department said this matter was “a great concern” to the federal government. It said it wanted a role in the process because the remedy designed in New York might serve as a national model for dealing with this problem. The onus is now on the state to come up with that remedy.

Geralyn Spiesz: Doors opening for all with Down syndrome

The Buffalo News - Updated: October 15, 2009, 12:33 PM /

A spectacular movement has been taking place over the past few decades. This movement has pushed boundaries, changed minds and opened doors. The people who have benefited from these efforts have reached the bar of expectation and in many cases shattered it on their way up.

October is National Down Syndrome Awareness Month and it is the perfect time for a new awareness of the astounding achievements of people who have Down syndrome. Today, 50 years after the extra chromosome responsible for Down syndrome was identified, our children’s potential is unlimited.

I am a mother of three boys. It was a shock when my husband and I learned our third son Lucas had Down syndrome. But we soon realized that our expectations for Lucas were the same as those for our other boys. I would never entertain the notion that any of my children’s potential was limited.

My first job as an occupational therapist was in developmental disabilities. Today, many more years later than I care to admit, I am amazed at the progress and change that has occurred. After Lucas was born I began learning all about Trisomy 21 and kept coming back to the same question: How could the presence of an extra chromosome mean severe disability and delay a few decades ago, yet children with Down syndrome today are successfully completing regular academics in school and becoming an integral part of society? Better yet, how much further can we go?

This journey began with parents who fought against a system that sent their children to institutions and taught them at home things the specialists of the day didn’t think they could learn. These parents stood strong against a school system that didn’t believe their children could learn alongside others. These parents hearts burst with pride as they won the right to put their children on a school bus to the neighborhood school and their hearts broke from outrage when society would limit their children’s opportunities because of outdated ideas.

Today universities are putting programs in place to attract and graduate people with intellectual disabilities, making a college education a reality for many.

The medical profession put together comprehensive health care plans so the often deadly complications that can come with Down syndrome can be aggressively and successfully treated. Early intervention services were made available to babies so that not a precious minute of their unlimited potential was wasted.

I thank all of these people and I eagerly accept the torch from them. In a few decades people with Down syndrome have gone from needing maximal help with basic tasks to completing degrees, having relationships and fulfilling their dreams.

Karen Gaffney, who has Down syndrome, received a regular high school diploma with a 3.4 grade point average, earned a college degree and swam Lake Tahoe competitively, more than once. She is the president of her own self-named foundation and travels the country educating society on the true realities of Down syndrome. She is but a representative of thousands of people who are achieving things few thought possible.

RITCHIE BLASTED FOR 'RETARDED' SLUR

Oct 14, 2009, Contactmusic.com - GUY RITCHIE has been attacked by campaigners for a disabilities group after dubbing his ex-wife MADONNA"retarded".

Richie made the comment in an Esquire magazine interview, during which he reflected on his divorce from the pop superstar.

He said, "I still love her. But she's retarded, too."

The quip appeared to reference Madonna's outburst during a gig on her Sticky & Sweet tour shortly after their 2008 split, when she gave a shout-out to the "emotionally retarded", before adding, "You may know a few people like that. God knows I do."

But the director's use of the term has upset representatives from disabilities advocate The Arc.

A spokesperson tells Us Weekly magazine, "Use of the R-word demeans people with intellectual disabilities."

_________________________________________________________________

Ritchie blasted for "retarded" Madonna slur

Wednesday, October 14 2009, 4:07pm EDT, Digital Spy - By Oli Simpson

Guy Ritchie has been criticised by campaigners for a disability group after he branded ex-wife Madonna "retarded".


Ritchie made the remark during an interview with Esquire magazine, while reflecting on his divorce from the popstar.


He said in the piece: "I still love her. But she's retarded, too."


According to Contactmusic, the comment was a reference to Madonna's outburst during a gig on her 'Sticky & Sweet' tour, when she gave a shout-out to the "emotionally retarded", before adding: "You may know a few people like that. God knows I do."


However, the director's use of the term has upset representatives from disability rights group The Arc.


A spokesperson for the organisation said: "Use of the R-word demeans people with intellectual disabilities."


Ritchie has yet to respond.

Health Care Reform Action Alert

We Need our Washington DC area Advocates on Capitol Hill This Thursday, October 8. Please join your fellow disability advocates to make sure the Community First Choice (CFC) Option and the CLASS Act make it into the final health care reform bill. Attend the Community NOW Advocacy Day on Thursday, October 8 at 1:00 pm in the Dirksen Senate Office Building, Room 430.


Opponents of long term services and supports reforms are working hard against us! Unfortunately, several governors are expressing their concerns about any expansion of Medicaid and the long term care insurance industry has recently launched a full scale attack on the CLASS plan (despite the fact that it will reduce the federal deficit by $58 billion). Click here to read a document that was just leaked to us on what one large long term care insurance company is doing to oppose the CLASS Act.


Whether the CFC option and the CLASS Act make it into the final Senate health care reform bill is up to us. Important work to merge the two Senate bills (Finance and HELP Committee versions) is taking place right now. We urgently need a strong and visible presence on Capitol Hill of disability and aging community advocates to make sure Congress does not strip these important provisions from the bill. Please encourage your staff, volunteers, and any other advocates for improved home and community based services to attend this critical event.


Please RSVP for the event. (If you have never set up a Google account, you may be asked to do so before viewing the RSVP form. It only takes about 15 seconds to set it up.) It is very important for us to know how many people to expect for this event so we strongly encourage you to RSVP. But if you can't RSVP, please come anyway!


If you have any questions or are having trouble with the RSVP form, please contact me at acosta@thedpc.org. A sincere thank you in advance for your support!

The Arc is pleased to announce that a strategic alliance has been formed with Parlerai Inc (Parlerai), the nation's first Augmentative Collaboration service.  A press release on the initiative was released today.

No law to protect vulnerable adults - Abusers can simply move on

By WILLIAM BENDER

Philadelphia Daily News, September 24, 2009

THE PHOTOGRAPHS of Michael Ferrara's face tell much of the story.

Blood pooling under his swollen eyes showed that the 25-year-old had been punched - hard. The marks around his neck were a clear sign of strangulation, his doctor said.

But Michael, who was living in a Delaware County group home for mentally handicapped adults at the time of the February 2008 assault, couldn't tell police what happened.

Born with a genetic mutation that caused severe brain damage and left him unable to speak or communicate normally, Michael can't identify his assailant.

"He can't even tell you who hurt him and what they did and how they did it," said his mother, Judi. "He's 25 years old, but he's like a child."

As a result, no charges were filed. And without a criminal conviction, whoever attacked Michael - police say most of the evidence pointed to his overnight caregiver - is free to work with similarly disabled adults.

"These people can continually work in the field," Ferrara said. "They can leave one agency and go to another agency."

That's because Pennsylvania is one of only five states in the nation without an adult-protection law that gives county or regional agencies the authority to investigate and record incidents of alleged abuse or neglect of adults with intellectual and developmental disabilities.

Children and the elderly are already covered.

In Delaware County, for example, Children and Youth Services (CYS) is the state-mandated agency that investigates child abuse. For senior citizens, there is the County Office of Services for the Aging (COSA).

But people like Michael Ferrara, as well as thousands of mentally handicapped adults between the ages of 18 and 59 who live in private residences, have no such protection in Pennsylvania.

"There are situations going on right now where advocates know there's someone in an abusive situation, and there's nothing you can do about it," said Stephen Suroviec, executive director of the Arc of Pennsylvania, an advocacy group for people with cognitive, intellectual and developmental disabilities.

Suspicions of child abuse or elder abuse can be reported to CYS or COSA, or similar agencies in other parts of the state, but mentally handicapped adults are often left to fend for themselves.

"We're concerned that someone with an intellectual disability, such as autism, or a dramatic brain injury is more vulnerable," said Doug Trout, executive director of the Arc of Delaware County.

If a neighbor calls the police on the suspicion that an adult is being abused inside the adult's home, cops cannot enter that house without probable cause, a warrant or permission from the homeowner. Agencies that provide assisted-living services to adults typically investigate their own cases of abuse, which Trout said creates a potential conflict of interest.

"It just doesn't make a whole lot of sense," he said.

Michael Ferrara, who has tuberous sclerosis, was living in a group home run by the Swarthmore-based Children and Adult Disability and Education Services (CADES) last year when he was assaulted.

The staff member who was suspected of hitting Michael said that he had a seizure and fell out of bed, but Michael's doctor said the injuries show that he had been subjected to choking and trauma to the head, face and neck.

Aston police investigated the incident and turned over the evidence to the Delaware County District Attorney's Office, but prosecutors said they could not rule out other potential culprits.

"We were not able to present enough evidence," Senior Deputy District Attorney James Mattera said this week. "There were suspicions, and the suspicion was probably accurate. It's just a matter of developing evidence."

Suspected abusers without a criminal record, therefore, can pass a background check to work in another group home or private residence.

"We find that people go from agency to agency," said Kathy Perry, an adult advocate with the Arc of Delaware County who helped Judi and Michael Ferrara after his injuries.

If a statewide Adult Protective Services system were created, cases of alleged abuse or neglect would be recorded and future employers would have access to that information, even if criminal charges weren't filed, Perry said.

"We preserve the right to privacy for the accused, yet it's the consumers every day that are being abused," she said. "Something in that doesn't seem right to me."

Adult-protective-services bills have been introduced in the state House and Senate, but both are stuck in committee. While there appears to be broad support for the legislation, the state has been unable to round up the estimated $6 million a year that it would cost to run the new system.

"Sadly enough, some of this exploitation and abuse sometimes is being done by family members," said state Sen. Patricia Vance, R-Cumberland, who chairs the Senate Aging and Youth Committee and sponsored one of the bills.

"When we talked with the administration, they have said there is absolutely no money there," Vance said.

Stacey Witalec, a spokeswoman for the state Department of Public Welfare, said her department is "100 percent supportive of the concept," but the money is unavailable.

Vance, who worked as a nurse before being elected, also introduced her bill last session with no success. "I'm going to keep going after this," Vance said.

The holdup is frustrating to Suroviec and others who say Pennsylvania's priorities are out of whack, considering that animal-cruelty laws seem to get passed "at the snap of a finger," he said.

Last month, Gov. Rendell signed a bill that set new penalties for people who steal dogs for fighting and for dog owners or breeders who crop ears and perform other types of illegal surgical procedures.

"If you have all of these laws to protect dogs, why don't you have laws to protect human beings?" Ferrara asked.

Lawmakers have known about this issue for years.

In 2003, the Legislative Budget and Finance Committee, a bipartisan agency that makes recommendations to the General Assembly, determined that there was a need for legislation to cover adults with physical or cognitive impairments.

The committee's report estimated that the new system would receive about 4,000 abuse reports a year involving people between the ages of 18 and 59, and that about 1,200 of them would be substantiated.

William Benson, executive director of CADES, which ran the group home where Michael Ferrara was assaulted, declined to comment on the employment status of the workers who were assigned to Ferrara.

But Benson said he supports the proposed legislation because it would give agencies such as CADES a clearer picture of who they are hiring - beyond a criminal-background check.

Currently, the only way to determine if someone has been suspected of abuse or neglect that did not result in criminal charges is if the prospective employee provides the information, Benson said.

Judi Ferrara said she was told that both CADES staffers who were assigned to her son the night he was beaten have been fired.

Today, Michael is living in a group home run by the Devereux Foundation. On a recent visit there, he was clearly happy with the new arrangement, smiling as he sat on his bed, with a Bullwinkle stuffed animal on his pillow.

But Ferrara, who has traveled to Harrisburg to share her son's story, doesn't know where his former caregivers are today. The one who allegedly abused him, she said, could be watching over others who, like Michael, are unable to speak up or protect themselves.

"He could be right now working at another agency because I don't have that conviction against him - and I can't get it," Ferrara said. "This population needs to be protected, and they're not being protected right now."

Disability services help students with everyday needs

By Hannah Loftus, Kansas State Collegian

Published: Monday, September 21, 2009

During early morning hours on campus, a K-State student zooms down a sidewalk in his powerchair playing Christian rap music as he zips along. His name is John Deterding and he has Cerebral Palsy.

But that is where CP and Deterding part ways. Apart from being in a power chair to get around campus, he does not really let his illness affect him.

“I have Cerebral Palsy, a neurological condition making it harder for me to do certain physical activities, especially those requiring balance,” said Deterding, junior in engineering. “I can walk, and always did in high school, but decided it would be much more efficient to use a power wheelchair to get around campus. The main thing with my CP is that it takes me longer to do things.”

The adjustment of going from high school to a teeming college campus is a major change for anyone, but someone with any type of disability has an added challenge. The demands of new workloads, such as academic, social and extracurricular activities all put strain on students, but for a person with a disability, it might take a longer to familiarize with the new experience.

“I go to Disability Support Services every week for help with time-management, and they also help me get the needed test accommodations when it comes to things like writing,” Deterding said.

Jason Maseberg-Tomlinson, a graduate who has a doctorate in counseling, said that the office of Disability Support Services at K-State is ready to help anyone with a disability. It serves students all across campus in every college and nearly all majors.

“We often set up academic accommodations, on a case by case basis,” said Maseberg-Tomlinson. “For example, we might make sure that a testing room is distraction free or make audio learning aids. We work closely with the department heads and the division of student life to gauge what is appropriate.”

Maseberg-Tomlinson said the students are not given any extra help when it comes to test taking, but the office sets up an alternate format. He said that all students at K-State are subject to the same academic standards of enrollment and class expectations.

According to an article by Kathleen Masterson for National Public Radio news, the secret to the success of a student with a disability has a lot to do with time management, but that it is very easy to fall behind fast. The creation of effective study routines and organization of study space is a good way to break down tough assignments.

“We help make K-State accessible, but when it comes to success, that is up to the student,” Maseberg-Tomlinson said.

However when the word disability is heard, most people associate the phrase with an actual physical or mobility impairment. But many of the students have learning disabilities.

“People associate the word disability with the visual aspect, but they don’t necessarily think about the cognitive disabilities. Here in the Office of Disability Support Services, we cater and service all students with any type of disability,” Maseberg-Tomlinson said.

According to Disability Support Services, the office has about 500 students currently registered, although the level of activity with the office varies. Some students use the accommodations each semester, while others choose to use them periodically or only when needed.

“There are many more students with disabilities than are actually registered with our office,” Maseberg-Tomlinson said. “It is by choice and many choose not to if they feel they do not need our services.”

Some challenges do face students with disabilities, depending on the student. Parts of campus are inaccessible because of the age of some of the older buildings.

“Universal design is a term for architecture, content and social participation that is accessible by all people,” Maseberg-Tomlinson said. “As we move into an environment of universal design, fewer students will need to register.”

However students with disabilities are also faced with the unexpected challenge of negative labels and standards.

“We like to avoid words like ‘handicapped’ and ‘retard;’ the history of these terms creates negative stereotypes,” Maseberg-Tomlinson said.

Deterding does not let his disability does slow him down and participates in Union Program Council, while having a passion for music and new and local bands. He also writes and records his own Christian rap under the name “Whyte Lyte.” Deterding said he will perform for anyone who will listen. His music can be heard on www.facebook.com/whytelyte.

“I love to stand out from the crowd and I like doing things people don’t necessarily expect me to be able to do,” Deterding said. “I was born this way, I have no ‘wish-I-could’s’ or ‘I-remember-back-when’s.’ This is the only life I’ve known, and I wouldn’t change anything about it.”

Job training program a victory for students at Hialeah High School

Project Victory, an employability skills training program for students with developmental disabilities, comes to Hialeah High.

BY JENNA FARMER

jfarmer@MiamiHerald.com

After listening to growing requests from the city's residents to annex additional special education programs into the school system, Hialeah Mayor Julio Robaina took action and requested Project Victory be brought to City Hall.


Project Victory is a training program that helps high school juniors and seniors with learning disabilities acquire basic employability skills. Created by Miami-Dade Public Schools in 1986, the program works with students in all public high schools.


The training program helps students with intellectual disabilities, autism spectrum disorders, learning and emotional/behavioral disabilities, orthopedic, language, and visual impairments, and hearing disorders, said Jill Brookner, supervisor of Project Victory and the school district's special education division.


Robaina knew it was crucial to bring the program to Hialeah, based on requests by residents who wanted more education programs for students with disabilities. The city was first municipality to seek out the program.


``In this program, the students develop skills they will use in the future, and it helps create habits that are crucial in finding a job,'' Robaina said.


The program launched in Hialeah in August, and currently serves students enrolled at Hialeah High School during the morning session, held at City Hall. After classes, students go to work sites at offices, local restaurants or department stores.


``It's just like a job,'' said Hialeah Project Victory teacher Janet Marrero. ``The students apply to participate in the program, and we check their grades and previous records and then go through the interview process.''


Osney Rodriguez, a junior at Hialeah High, said he applied for the program so he could learn new things.

``It's fun, it teaches me to get along with co-workers, and we have the best teachers in the world,'' Rodriguez said.


``We have a variety of things we do here such as scanning, shredding and basic clerical work, but academically, the students have to be up to par because they also do filing and sequencing of numbers,'' Marrero said.


Students involved in the program in 2008 were employed at sites such as Publix, Winn-Dixie, McDonald's, Big Lots, Land Shark Stadium, Taco Bell, KFC, Cold Stone Creamery, hospitals, car washes and gas stations, Brookner said.


The program does not just keep the students busy during their school hours, however. At the end of 2008, out of the 33 students who were employed through Project Victory, 25 were employed after high school, Brookner said.


Although it will be hard to estimate the success rate of employment for the current students because of the current economy, the teachers and participants remain optimistic.


‘Although employment is our ultimate goal, we also measure the students' success in terms of growth and attainment of skills,'' Brookner said.

Robaina expressed his high hopes for the program as well.


``I hope this acts as a model for other cities to open their doors so these young men and women can be productive members of their community, in the public and private sector,'' he said.

Wish Peter Berns a Happy Birthday & Support The Arc on Facebook


Scott Batchelar came up with the innovative idea of benefiting The Arc through Facebook. In celebration of his birthday Scott posted a message on Facebook asking that in lieu of gifts, folks make a contribution to The Arc.


Peter Berns, The Arc’s Executive Director was inspired by Scott’s example and in celebration of Peter’s birthday on September 22, he’s asking for donations to The Arc.

Check out Peter’s Facebook page and wish him a Happy Birthday while supporting The Arc.

Rethinking ‘Retarded’: Should It Leave the Lexicon?
NPR – Neda Ulaby
September 8, 2009


"Retarded" used to be a garden-variety insult, but it may be the next candidate for prime-time bleeping.


E. Duff Wrobbel never gave the word much thought — until his daughter was born with Down syndrome. When she was just a baby, Wrobbel was driving with her when another car cut them off.


"And I actually said that word," says Wrobbel, who is a professor of speech communications. "And then I stopped my car and got teary. And I thought, 'Oh my gosh, I can't believe I just said that."


Now, Wrobbel has joined other activists who campaign against the word "retard." To them, it's not a hilarious put-down; it's hate speech. (The word has been retired by medical and social service organizations, which prefer the term "intellectual disabilities" instead.) They petition TV networks and comedians, and organize against movies like last summer's hit film Tropic Thunder, which coined the term "full retard" to describe a certain kind of unsuccessful Oscar-baiting role.


While the Tropic Thunder protests did little but provide publicity, there are signs that the word's status may be changing. Earlier this summer, film critic Eric D. Snider was reviewing a DVD called Miss March. It's a stinker of an insult comedy uniformly hated by critics when it came out in theaters last spring. Snider noticed that in the DVD version, actors' lips were clearly saying "retard" repeatedly, but the word was dubbed out and replaced with "stupid" or "crackhead." (He wrote about it here.)


It's not just movies rethinking "retard" as an easy laugh. The Black Eyed Peas recorded a "clean" version of their song "Let's Get Retarded" that changed that line to "Let's Get It Started." And a few months ago, popular sex advice columnist Dan Savage renounced his use of the word.


"You know, I just sat down to write the column, and I'd used the word 'retard' in a column recently," he explained. "And there was a handful of letters taking me to task and I thought, 'OK, I won't use it anymore. I'll use a new word. I hope you like this one better.' "The new word was "leotard." As in, "You're being totally leotarded."

"Frankly, I've heard people using the 'r-word,' " Savage says, "and it just seems so pansy-assed, if I may use that phrase."


Savage is gay and brings a specific knowledge to that phrase. According to Oxford English Dictionary editor Jesse Sheidlower, "gay" and "retard"occupy parallel linguistic positions when it comes to schoolyard trash talk. They mean the same thing — "stupid" or "bad."


Sheidlower can trace the use of "retard" as an insult back to the late 1950s. The first reference he could find was in a book about jazz. In a reference to Playboy magazine, a character says, "that Hefner jazz is for retarded jockstraps."


"Retarded," like "gay," functions as an all-purpose put-down, says Sheidlower. If you say, "Stop being so gay," or "That movie was retarded,"it's not meant to be taken literally — as in "Stop being so homosexual,"or "That movie was intellectually disabled." That differentiates those words from racist slurs.

A poster created by The R-Word Campaign, a grass-roots organization run by Rick and Wanda Felty, whose daughter has disabilities. "It's not about freedom of speech," the Feltys write on their Web site. "Its simply about respect."


Coates says that in order for hateful language to become socially unacceptable, it needs to be linked with the kind of bigoted behavior no one wants to be associated with. And he suggests that there needs to be a fundamental cultural shift in empathy.


"As a young man, I used the word 'chink' all the time," he says. "We referred to the corner store as 'the chink store' and thought nothing of it. What happens is, if you're lucky, you come to understand those words describe actual human beings."


Until then, "retard" will continue as a commonplace zinger.

http://www.npr.org/templates/story/story.php?storyId=112479383

By AMY HAMILTON/The Grand Junction Daily Sentinel
Monday, September 07, 2009

Matthew Duffy smiles broadly in appreciation each time Josie Mullally and Hannah Piper hand him an M&M. The longtime client of Mesa Developmental Services doesn’t speak much but has learned recently to say “more” when the small chocolate candies are up for the taking. It’s that kind of progress that can make the day for direct support professionals like Mullally and Piper.

Behind the scenes work of direct support professionals, those who work directly with the developmentally disabled, often goes unnoticed.

The work can be physically and emotionally draining, not to mention that it’s often for low pay, said Marilee Langfitt, director of public relations at Mesa Developmental Services.

“There’s something to be said about feeling good about what you do,” she said. “You have to have a lot of energy. The ones who stay have their hearts into it.”

About 300 employees at Mesa Developmental Services serve about 600 clients. Direct support professionals do the work for developmentally disabled people that normal functioning people do for themselves. That includes all the grooming, dressing, feeding, and every other action normally functioning people generally take for granted. Direct service professionals encourage clients’ development with therapy, taking them on outings, delivering medications, preparing meals, and in general, providing nonstop care and attention.

The workers are honored this week, through Sunday, during National Direct Service Professionals Week.

A nationwide shortage of direct service professionals is expected to increase. About 874,000 direct service professionals were estimated to be working in the nation in 2003, according to the U.S. Department of Health and Human Services.

By 2020 the agency estimates the demand for direct support professionals will grow to about 1.2 million to care for an estimated 1.4 million people with developmental or intellectual disabilities who receive some form of government-funded support. Increase in need is expected to stem from population booms, increases in life expectancies and aging of family caregivers.

Langfitt said that the work of direct service professionals is something that people either have an affinity for and stick with for years, or quickly move on.

Direct service professional Sherry Sparn works at a group home where Duffy spends the second half of his days. Sparn said she considered the work after she had a grandchild with developmental disabilities who died.

“Everyone has their own reason for working, mine’s a little personal,” she said. “I guess that most people don’t know that these people have amazing personalities.”

‘Mental retardation’ officially removed from MRDD name

By Jim Sullivan | The Tribune/Published Thursday, September 3, 2009

IRONTON — It is not what is in their name, but what actually has been removed.

Starting on Aug. 20, the Lawrence County Board of Developmental Disabilities removed the term “mental retardation” from its official title following passage of Senate Bill 79, which subsequently changed the name of the Ohio Department of Mental Retardation and Development Disabilities (MRDD).


The bill was signed by Gov. Ted Strickland on July 7 and becomes law 90 days after that. The bill was introduced by State Sen. Jimmy Stewart, (R-Albany).

Ohio now joins 43 other states that have dropped the medical condition phrase “mental retardation” from their official names. Officials throughout the state were initially committed to keeping the term “mental retardation” around as not to confuse voters by having an understandable name on the ballot when renewal and replacement levies appeared.

Ohio is one of only a few states in which individual county developmental disability boards raise money through property taxes to pay for and provide services for their clients.

With the new name, workers at the county agency say the change has been a smooth one so far.

“It has not been a big transition for us,” explained Ashleigh Williams, Public Relations/Personnel Director for the Lawrence County Board of Developmental Disabilities. “We have had to change our letterhead, email addresses and our signs.”

“So far we have positive feedback,” Williams added. “From the people we’ve talked to the name change has been very receptive.”

The change follows a cycle in how to properly address those with developmental disabilities. Forty years ago, mental retardation was substituted for words like “feeble-minded” and “imbeciles.” Now that has been replaced.

“There was always a stigma attached to having mental retardation in the name. Hopefully changing the name will remove that stigma and allow people to see the abilities of the individuals in these programs,” said Donna Fugett, whose daughter has been an employee at Tri-State Industries for 11 years.

“I think it is a positive change. Developmental disabilities encompass the broader range of people that we serve, while taking away any negative attention,” said Veronica Cameron, a preschool instructor at the Lawrence County Early Childhood Center in South Point.

The Lawrence County Board of Developmental Disabilities serves more than 500 children and adults throughout the county.

Services are provided at the Open Door Schools in Ironton, Tri-State Industries in Coal Grove and the Early Childhood Center in South Point.

Published: 06:30 AM, Wed Sep 02, 2009

Rhodes declared incompetent; will no longer face death penalty

By Drew Brooks

Staff writer, The Fayettville Observer, FayObserver.com

One man accused of murder will no longer face the death penalty and another has been declared incompetent for trial after hearings Tuesday in Cumberland County Superior Court.


Judge Jack Thompson ruled that Quintarus Rhodes will no longer face the possibility of the death penalty because a psychologist found him to be mentally retarded.


Prosecutor Cal Colyer did not challenge the decision.


State law prohibits sentencing the mentally retarded to death.


Rhodes, 26, is accused of killing 22-year-old James Behlin at a Bragg Boulevard nightclub in April 2007. He faces charges of first-degree murder and two counts of assault with a deadly weapon inflicting serious injury with intent to kill. Rhodes has pleaded not guilty.


Police have said Rhodes and two others shot at three men outside Club Palace, killing Behlin.


Behlin's family attended the hearing.


Rhodes' lawyer, David Smith, presented a psychological evaluation, education records and other documents showing that Rhodes' IQ was lower than the state threshold for declaring someone mentally retarded.


Smith said his client had a number of issues, including social problems and academic issues.


"He has not been able to function at a mainstream level," Smith said.


In a separate case, Thompson ruled that James Donnell McLaurin was incompetent to stand trial on a first-degree murder charge and should continue to be treated at a state facility.


McLaurin, 51, is accused of stabbing his father - 87-year-old James H. McLaurin - to death in January 2005.


Family for the men attended the hearing.


Smith, who also represented McLaurin, said officials at Central Regional Hospital had recommended that charges against McLaurin be dismissed because he is unlikely to regain his competency through treatment.


McLaurin originally was declared incompetent on June 16, 2005, Smith said.


Colyer, while not challenging McLaurin's competency, objected to dismissing the charges.


He said if the charges were dismissed, McLaurin, who is potentially dangerous to others, eventually would be released to a local group home that would not have constant security.


"They don't have any way of preventing him from walking out of that facility," Colyer said.

Staff writer Drew Brooks can be reached at brooksd@fayobserver.com or 486-3567.

Corpus Christi 'fight club' is just the tip of the iceberg

August 31, 7:51 AM Austin Civil Rights Examiner Michelle Palmer

Many folks were appalled when six employees of the Corpus Christi State School were charged in connection with what police described as a "fight club" at the school, which houses people with mental and developmental disabilities.


The incidents came to light when a cell phone of one of the workers was found at a clothing store and turned in to police. Several videos were filmed in early 2008. What this video revealed is that the employees responsible for the care and well-being of these residents were using them for their own amusement by creating scenarios that caused the residents to physically combat each other.


This is not an isolated incident in Texas. While the method of abuse or neglect was novel, the fact remains that the State school system in Texas is plagued by issues of abuse, neglect, and high turnover. Texas ranks 49th out of 50 states when it comes to per-capita funding for mental health services, which the State Schools are a part of, and this is reflected in the quality of personnel they hire to look after our most vulnerable citizens. In the last year there have been allegations of sexual abuse, injury to one resident by another resident, and again, an unacceptably high turnover in staff. Beyond incidents of direct abuse, litigation has brought the Texas State Schools under fire for many years.


In 1965, the Texas Mental Health and Mental Retardation Act authorized county mental retardation centers, with the goal of helping people with mild retardation to live with their families. This has been good news for those with mild disability. Austin Area businesses have been very cooperative with this effort, hiring many mentally disabled individuals and giving them a chance at a normal and productive life.


Some large employers, such as HEB, have embraced this population, and lessened the stigma of their disabilities. This attitude and effort caused a shift in the population of residents in State Schools to those with more profound mental retardation and multiple disabilities. By 1974, Austin State School's population had been reduced to 1,400.


Even in those clients that have been able to live outside the State School System there have been issues, as a recent Statesman article implies:

www.statesman.com/news/content/news/stories/local/2009/08/30/0830board.html


As the article reports, even those living semi-independently in the community are still at risk. Texas does nothing to protect them, despite repeated efforts at the legislative level to create laws to supervise the care of this population. It seems no one can agree on what those laws should be.


However, the issue of the federal lawsuit are the 13 remaining state facilities for disabled and mentally impaired individuals that still provide 24 hour care for more than 4,500 Texans, 435 of those at the Austin State School. These are the most vulnerable population of disabled and mentally challenged individuals in our state.


In May of 2009, the state reached an agreement with the U.S. Department of Justice on a comprehensive action plan to improve care and coordination of services for residents of State Schools, after the DOJ determined that 53 of the 114 deaths of residents in the State School system over a one-year period could have been prevented. The agreement outlines the state's plan to address issues identified by the Department of Justice in 2006 and 2008. In that agreement the State pledges to spend $112 million over the next five years to improve standards of care.


The question now is: what will be different this time? This isn't the State's first time at this particular Rodeo. State hospitals have been under fire for many decades. Reform has been demanded, lawsuits have been filed, and institutions have been closed for failure to meet minimum standards - which only reduces the help available to families without the resources to care for these patients - which often results in their mistreatment in the group homes outlined in the Statesman article above. This has been the case for both those institutions meant to provide for the mentally disabled, as well as those institutions that provided mental health services for the mentally ill. Only time will tell if Texas is up to the task. In the meantime, a call to your Representative might do a world of good.

http://www.mysanantonio.com/news/local_news/State_schools_report_shows_an_agency_in_breakdown.html

lubbockonline.com/stories/083009/loc_487762369.shtml

Project teaches people with disabilities to stand up for themselves

Posted Sunday, Aug. 30, 2009 Star-Telegram
By JAN JARVIS
jjarvis@star-telegram.com

David Swallow has been called retarded all of his life.

"I hate that word," said Swallow, 54, of Fort Worth.

But instead of dwelling on negative stereotypes, he has tried to educate others, including lawmakers, about more positive alternatives. This year, he pushed for a bill that would ban the word from state statutes.

"People tell you that you can’t do anything, but I have proved them wrong every time," he said. "I have a car, I pay insurance, I drive, I’m my mother’s caregiver, and I am contributing to the community."

Swallow is among the first graduates of a new project designed to teach people with developmental and intellectual disabilities how to stand up for themselves. The Arc of Greater Tarrant County received a $75,000 grant from the Texas Council of Developmental Disabilities to deliver the program over three years. It will serve adults in Tarrant, Johnson, Parker, Hood and Wise counties.

The project, which focuses on advocacy and leadership skills, was developed to give people the tools they need to ask for what they want and start a grassroots effort, said Erinn Hall Inman, project coordinator. "The purpose is to help them achieve their dreams and the highest quality of life possible," she said.

Some of the advocates visited lawmakers in Austin earlier this year and more recently attended a town hall meeting on the healthcare overhaul.

The project helps participants learn communication skills, such as how to make eye contact and give a speech. They also learn to testify, write letters to lawmakers and tell their stories effectively.

"I can throw out stats and evidence-based this and that," she said. "But the best way to reach out to lawmakers is for the self-advocates to tell their own stories."

When Beverly Black spoke out against state schools, she drew on her own experiences. She has traveled to schools to talk with officials and protest poor treatment of residents.

As a teenager she lived in the Denton State School because her parents thought she would learn more there. But as soon as she was 18, she moved into a group home and got a job. Now 55, Black has been married for 30 years, owns a home and takes care of her elderly parents.

"I wanted to get out of the state school and be in the real world," Black said. "It was hard, but I told myself I could go to work all day."

Swallow has spent 30 years proving that stereotypes surrounding people with disabilities are unfair.

For 20 years, he lived with his brother, Dale, also a self-advocate, and held a job. After his mother had a stroke, he moved back home to take care of her, but he has remained active. He serves on several boards, is president-elect of United Advocates of Greater Tarrant County and acts as a role model for newcomers to the self-advocacy project. Since getting a computer, he has started using Facebook and Twitter to spread his message.

Like other self-advocates, he is dedicated to removing barriers that stand in the way of people with disabilities. But most of all, he said, he wants his voice heard.

Self-advocates aren’t expecting the impossible; they just want the opportunity to weigh in on issues that affect them, Inman said.

"I’ve yet to meet a self-advocate who’s asking for things like infinity pools," she said. "I’ve only heard them ask for things like transportation and inclusion."

For more information on where the advocacy project is offered, call 817-877-1477 or visit www.arcgtc.org.

08.28.2009 8:18 am

What should happen in the debate over autism and vaccines?
By Kurt Greenbaum

St. Louis Post-Dispatch


Today, NBC News is wading into the debate over whether vaccinations can cause autism in children. This morning, the network broadcast a portion of an interview with Dr. Andrew Wakefield, whose 1998 research paper in The Lancet launched the debate. The paper made a connection between the MMR (measles, mumps, rubella) vaccine and autism. Wakefield recommended using individual vaccines for the three diseases, not the combined MMR.


Tonight, the network’s Dateline will focus on the debate. I exaggerate, but there are zillions of personal stories out there from individuals who say their children were developing normally until they received a battery of vaccinations. From then on, their children’s normal development was interrupted and they were later diagnosed as autistic.


In an open letter to its members (PDF), the autism advocacy group Thoughful House explained to its members why it cooperated with NBC News.


In our estimation, there has not yet been any fair coverage in the mainstream media of Dr. Wakefield or the work of Thoughtful House. While we have a large community of supporters that know Dr. Wakefield’s credibility and the accomplishments of Thoughtful House and our excellent physicians and clinicians….We thought that if we ever were able to communicate with a fairminded journalist working at a media outlet with both credibility and reach then it was likely to be worth the risk trying to tell our story.


Meanwhile, Wakefield’s paper in the Lancet has been called into question. Of the original 13 authors, 10 have withdrawn their name from the paper. And no large-scale study has reproduced the results of Wakefield’s study. Adding to that, more news broke this summer from Autism Speaks, another major advocacy group for families dealing with autism. In a statement on July 30, the organization’s chief science officer, Dr. Geri Dawson, questioned the connection between vaccines and autism.


Overwhelmingly, these studies have not found evidence for a causal relationship between either thimerosal or the MMR vaccine and autism. At the same time, some parents have reported that the appearance of autism symptoms coincided with vaccination, and thus have advocated for more research on the potential role of vaccines in autism. As an organization that is committed to understanding all the potential causes of autism, we cannot dismiss the concerns of parents…Autism Speaks believes that parental concerns merit thorough investigation.


The debate sends chills up the spine of public health officials, who say that vaccinations work because the vast majority of people get them. Vaccines have wiped out scourages such as measles, smallpox and polio. if major swaths of the population start opting out of vaccines, medical experts say, it will give these diseases a foothold to return.


So what’s the next step in the debate? What should happen in this debate?

The Arc of the United States and all children and adults with intellectual and developmental disabilities and their families lost its all time legislative champion with the death last night of Senator Edward M. Kennedy (D-MA).  His legislative achievements in the field of disability were many and far reaching.  Civil rights, education and health care were the cornerstones of his efforts to help all Americans live decent and productive lives. 


In the rights arena, his most notable achievement was the enactment of the Americans with Disabilities Act in 1990.  He played an instrumental role in the passage of Public Law 94-142 in 1975 (now known as the Individuals with Disabilities Education Act) which gave every student with a disability the right to a free appropriate public education.  Senator Kennedy was one of four Members of Congress who, along with former President George W. Bush, crafted the No Child Left Behind Act.  He was instrumental in assuring that all students with disabilities would be part of the student achievement assessments under this law.  Last year, he co-authored the Higher Education Opportunity Act which, for the first time in Federal law, will afford higher education opportunities for students with intellectual disabilities. Other major civil rights accomplishments that helped people with disabilities enter the mainstream of our society include the Fair Housing Act and the Voting Rights Act.

As a steady voice for comprehensive, quality and affordable health care reform, Senator Kennedy pushed hard over his decades of Senate service to expand the National Institutes of Health, created programs to protect pregnant women and children, the Children’s Health Insurance Program (SCHIP), the Genetic Information Nondiscrimination Act and the recently enacted Medicare prescription drug expansion.  As many have observed, his absence from the Senate this year has significantly hindered the passage of health care reform.

In his role as a member, Ranking Minority Member, and Chairman of the Health, Education, Labor and Pensions Committee, he authored the Developmental Disabilities Act, established Protection and Advocacy Systems in every state, and oversaw several extensions of the Rehabilitation Act, including the addition of Supported Employment and steady increases in the minimum wage.

Senator Kennedy was first elected in 1962 and served six terms.  He ranks third in total service in the U. S. Senate.  He was often referred to as the “Lion of the Senate”.  A consummate deal maker, many of his legislative successes were due to his ability to reach across the aisle and secure bipartisan support, sometimes with the most conservative of Senators.  He was an electrifying orator, his booming voice resounding off the walls of the Senate chamber.  Senator Kennedy did his homework, always exceptionally well prepared for his Committee hearings, bill markups and floor speeches.  He was often noted as having the best and most loyal staff on Capitol Hill.

Senator Kennedy often described his interest in disability policy due to his family history.  Late in life, his father suffered from a serious stroke.  His sister Rosemary was born with an intellectual disability and was sheltered during her adulthood in a private institution.  His sister Eunice, who died only two weeks ago, headed up the Joseph P. Kennedy Jr. Foundation and created the Special Olympics.  The Senator’s two sons also experience disability.  Ted Jr. lost a leg to cancer as a child.  Patrick, a U. S. Congressman from Rhode Island, has a mental illness.

Senator Kennedy spoke at several events sponsored by The Arc, most notably the Disability Policy Seminar.  In 2001, he was the recipient of The Arc’s John H. Chafee Leadership in Public Policy Award.  Last month, The Arc’s President, Lynne Cleveland, announced that Senator Kennedy would be this year’s President’s Award recipient.  This award will now be given posthumously at an event in the near future.

August 26, 2009

On June 23, the Centers for Medicare and Medicaid Services (CMS) published an Advance Notice of Proposed Rulemaking (ANPRM) on the Home and Community Based Services (HCBS) waiver program. 


CMS issued this ANPRM to solicit advance public comments on the merits of providing states the option to combine or eliminate the existing three permitted waiver targeting groups, and on the most effective means to define home and community.  The comment deadline on this ANPRM was August 21.  See the 4-page ANPRM at http://edocket.access.gpo.gov/2009/pdf/E9-14559.pdf...

Attitudes Toward The Intellectually Disabled

Copyright © 2009 National Public Radio®. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

Click here to listen online.

LYNN NEARY, host:

This is TALK OF THE NATION. I'm Lynn Neary in Washington.

Eunice Kennedy Shriver died today. As the founder of the Special Olympics, Shriver challenged the way we view people with intellectual disabilities and the way they view themselves. No longer are they seen a merely as dependent and childlike, isolated from the rest of society. Many live independently in mainstream society, holding down jobs and forming life-long relationships. But just how much have attitudes really changed?

Later in the hour: the economist who pushed the cash for clunkers program. How did it affect you?

But first: changing attitudes on intellectual disabilities. If you or a family member has an intellectual disability, tell us your story. Our number here in Washington is 800-989-8255. Our email address is talk@npr.org. And you can join the conversation at our Web site. Go to npr.org and click on TALK OF THE NATION.

We begin with Ann Turnbull. She is cofounder, co-director and distinguished professor at the Beach Center on Disability at the University of Kansas, and she joins us from member station KANU in Lawrence, Kansas. Welcome to the program, Ann.

Professor ANN TURNBULL (Beach Center on Disability, University of Kansas): Thank you, Lynn.

NEARY: Now, I know you had a son with Down Syndrome and that he recently passed away. Is that correct?

Prof. TURNBULL: Lynn, yes I did have a son. He did not have Down Syndrome, but he did have an intellectual disability. And very sadly, he died in January at the age of 41.

NEARY: At the age of 41. I'm so sorry about that. And I wonder what kinds of changes you saw in attitudes towards him and towards others with intellectual disabilities over the course of his lifetime.

Prof. TURNBULL: Lynn, that's a really excellent question, as we celebrate today Mrs. Shriver's legacy. When Jay first - well, when my husband Rud and I first married, Jay was seven. And Jay came to live with us. And at that time, one of my memories is that I had been a special education teacher, and often people would say to me, oh, you must be so patient, which is not right at all. But after Jay came home, it switched to, oh, it must be so sad.

NEARY: Mm-hmm.

Prof. TURNBULL: And I can remember lots of those early experiences being one of sympathy and worst-case-scenario pity. And things over the years, so much because of Mrs. Shriver and the work that she has done, has gradually evolved -no huge, momentous changes, but slow, steady changes. In thinking about Mrs. Shriver, I was a public policy fellow at the Kennedy Foundation. And my family and I were moving to Washington for the year. This was in the late '80s. And we were trying to find a house to rent, a furnished house to rent. We'd looked at a house in Bethesda, and the person who owned it - a psychology professor at one of the surrounding universities - when we commented to him that we had three children and one - we told him the grades of our daughters, and then that our son was in special education, he paused and he said I'm sorry, but I can't rent to you.

NEARY: Really?

Prof. TURNBULL: And we said, what do you mean? And he said, I couldn't do that to my neighbors.

NEARY: Now, what year was this?

Prof. TURNBULL: This was in 1986, 87.

NEARY: Not that long ago, really.

Prof. TURNBULL: Yeah. And he said, and I couldn't do it to my property. I'm leaving my furniture here, and I couldn't take that risk. And I said, well, our daughters Amy and Kate would be the first to tell you that their brother is far tidier than they are, and that he takes excellent care of property. And said, I'm sorry. I can't rent to you. I just can't accept that responsibility. That's the sort of thing that Mrs. Shriver committed herself to change.

NEARY: And do you think that it would be impossible to encounter that today, or do you think that those kinds of prejudices still linger?

Prof. TURNBULL: I think that they still linger in some places, but I think not as typically as they did 20 years ago. I think that today, they're - our son had an amazing home in a typical neighborhood in our community. He owned his own home. He worked at the University of Kansas for over 20 years. And he was a person with a very significant intellectual disability that was compounded by also having autism and a bipolar disorder. And I think the very way he lived his life in our community is an example of what's possible in communities across the country when people with intellectual disability have a chance to experience dignity in their lives.

NEARY: All right. We're going to take a call now. We have Jessica on the line from Traverse City, Michigan. Hi, Jessica. Go ahead.

JESSICA (Caller): Hi. I have an uncle who was born with brain damage, and he lived with my grandparents up until they passed away. And then from that point on, he was moved to a home. And I just feel that I don't necessarily think, in terms of attitudes, how much they've actually changed. I think there's still a great deal of ignorance out there, because, like as Ms. Shriver was working towards - there was not enough exposure. It - that's the bottom line. When you look at the things that people find amusing or funny or uncomfortable, if you've never been exposed to it, you have no awareness, no relation, no nothing to basically process that and see how would you make this person more human? Or, how would you make the person have dignity? So…

NEARY: So, that seems to call for greater integration into the mainstream society, I would think, Ann Turnbull. In order for attitudes to change, I think what this caller is saying is more of us need to know and have some kind of relationship with somebody who has this kind of a disability.

Prof. TURNBULL: Lynn, I think that's exactly right. Jessica, you make a good point, that the more that there is exposure, the more that people with intellectual disabilities are living in typical neighborhoods and going to typical schools and working in typical employment settings and hanging out in the community where other people without disabilities experience recreation, the more acceptance there's going to be, relationships.

JESSICA: Yes.

Prof. TURNBULL: Jay's greatest social security was not the government money, but it was his authentic relationships with so many people who cared about him.

NEARY: Let me just ask you, Jessica: What was your experience when you were with your uncle? Did people treat you and him strangely in any way? Did they - what happened?

JESSICA: Well, I think like the last caller mentioned, you know, you get a lot sympathy more than anything. People look at you and think, oh, how unfortunate, and that must be really sad, or this or that. But in terms of exposure, I was really fortunate. The grade school I went to had a really great program that integrated people with all kinds of disabilities, whether it was deaf, blind, mental disabilities, all that. And then they integrated the regular students in for, like, one period a day, where you collaborated with them on some project or another. Perhaps you learned signed language. Other times, it could be a form a recreation. And I think - I know to this day from that experience alone, I have had - even with my uncle, like, that has changed a lot in my viewpoint of anyone with any kind of disability.

NEARY: All right. Well, thanks so much for your call, Jessica.

JESSICA: Thank you.

NEARY: And I want to invite Paul Marchand to join the conversation now. He is the director of the Disability Policy Collaboration for the Arc. That's an organization for people with intellectual and developmental disabilities. And he is joining me here in Studio 3A. Good to have you with us.

Mr. PAUL MARCHAND (Director, Disability Policy Collaboration for the Arc): Delighted to be here.

NEARY: I want to follow up on what we just heard Jessica say, the caller Jessica say, about her experience in terms of having a school that helped her to understand people with intellectual disabilities. How important is that? How important is it for young people to get that kind of exposure and that kind of education in order for attitudes to change going forward?

Mr. MARCHAND: A short history lesson. It took us until 1975 as a nation to guarantee the right to a free, appropriate education for all students with disabilities. That was a great victory for the disability community in guaranteeing that children who are forced to live at home - legally forced out by principals and school boards from an education - one terrific, unintended consequence of that great civil rights law was that for the first time, students without disabilities were exposed to students with disabilities on a day-to-day basis. And so simply, that exposure has brought up the latest and new generation of children, who are now young adults, who have spent their entire educational lives with students with disabilities.

NEARY: And do you think that really has affected attitudes in general society for good?

Mr. MARCHAND: It has affected the attitudes of those children. I'm not sure the attitudes of their parents or grandparents or others have been dented enough yet. And there's ample evidence that we could talk about, about how society is still well behind the curve in regards to accepting individuals with intellectual disabilities in our society.

NEARY: All right, let's see if we can get a call in here before the break - John, calling from Colorado. Hi, John.

JOHN (Caller): Hello. How's it going?

NEARY: Good. Go ahead.

JOHN: So, well, I'm a host home provider for two developmentally disabled adults, one that is fairly high-functioning. And her experience seems to have changed a little bit, but not as much as we would like, as far as what society - how society views her, you know, different insults that she has gotten, expectations that are perhaps a little beyond her ability in the work world.

So I just wanted to kind of attest to the fact that things have changed quite a bit, and I've been working with this population for, I guess, 15 years now. And - but it's still - it is fairly slow.

Mr. MARCHAND: I would concur with that. Going back into my first years in special education in the mid-'60s, all of the children who could get into school at the time were completely segregated from their peers without disabilities. Indeed, my classroom was right next to the band room, which means that I could barely hear them, and they could barely hear me.

Things have changed significantly since then. However, less than 20 percent of students with intellectual disabilities spend a significant portion of their day in the regular education classroom with their peers today. We should be doing much better than that.

NEARY: Paul Marchand is director of the Disability Policy Collaboration for the Arc. We're also joined by Ann Turnbull. We'll be continuing our discussion about attitudes towards people with intellectual disabilities when we return after a short break. You're listening to TALK OF THE NATION from NPR News.

(Soundbite of music)

NEARY: This is TALK OF THE NATION. I'm Lynn Neary in Washington. We had planned to talk in this hour with the author of "American Chinatown." We have moved that conversation to tomorrow.

Right now, we're discussing attitudes about intellectual disabilities. Eunice Kennedy Shriver spent her life working to change the way we view people with disabilities and in many ways succeeded. If you or a family member has an intellectual disability, tell us your story.

Our number here in Washington is 800-989-8255. Our email address is talk@npr.org, and you can join the conversation at our Web site. Go to npr.org, and click on TALK OF THE NATION.

Our guests are Ann Turnbull - co-founder, co-director and distinguished professor at the Beach Center on Disability at the University of Kansas - and Paul Marchand. He directs the Disability Policy Collaboration for the Arc. That's an organization for people with intellectual and developmental disabilities.

We'd like to take a call now. We're going to go to John, and John is calling from Wheat Ridge, Colorado. Hi, John.

JOHN: Hello. So, as I was saying, as a host home provider for two special-needs folks, things haven't entirely changed, particularly in the work world. It seems as though the expectations that one of my clients has to deal with are pretty high, and people are not entirely understanding, and it's unfortunate. And I have to say that as much as societal attitudes have changed somewhat, we can look at the average sitcom or the average cartoon or the average, you know, funny movie, and the characters that are sort of the butt of so many jokes are the characters that seem to be intellectually not as sharp. And it's like our - the very foundation of some of our sense of humor is mocking people that seem to be not as intellectually sharp as others, and I think that that is not necessarily helping with people's images of special-needs folks.

NEARY: All right, thanks so much for your call. And Ann Turnbull, could you respond?

Prof. TURNBULL: Yes. I think John makes an excellent point, that we've come to a point in our society where it should be absolutely unacceptable to have the type of humor and mocking that John just talked about. Just thinking about it makes my blood pressure boil. And that is something that, as a society, it should just - we need to move to a time when everyone knows that that is just not funny.

NEARY: And here's an email from a mother, a parent, a listener from Highland, Illinois. I am the parent of a child with Down Syndrome. I'm glad things are so much better than they were even one generation ago, but I will not believe that we have made any real progress until I hear the R-word, retard, bleeped out on primetime television like other hate speech.

As it is right now, we hear it in primetime, on networks, on cartoons, on reality shows, and as one of the backbones of most stand-up comedy routines. My dozens of attempts to discuss this with my congressional representatives and with members of the FCC have fallen on deaf ears.

Mr. MARCHAND: Well, we're hoping to make some inroads in federal policy by eliminating the term mental retardation, which is where the retard comes from. And mental retardation was a medical term used by physicians and psychologists and psychiatrists to label individuals with a particular kind of impairment. It is definitely time to get rid of the R-word. Most organizations dealing with disability or intellectual disability have moved well beyond the R-word.

Remember that the words idiot, imbecile and moron were medical terms decades ago. And yet now they are part of the typical conversation, don't have the same connotation as the R-word because it was decades ago. But it's the same principle.

NEARY: And we should point out that your organization, which has been around for a long time, actually has changed its name, or has adapted its name.

Mr. MARCHAND: That is correct.

NEARY: I wonder if you could explain that for us.

Mr. MARCHAND: Sure. Well, the Arc has a 60-year history, and the Arc was founded and is still operated by parents of children and adults with intellectual disabilities. And we have moved from retarded children to retarded citizens to an acronym, and now the Arc is not an acronym. It is simply the Arc, as two words, meant to designate a national organization. There are still people who might be concerned with that word, but it is the name of our organization, and it is not meant to designate the R-word.

The movie last year, "Tropic Thunder," which portrayed Simple Jack, a person with mental retardation, created a firestorm in our world. And the people who were most angry at that depiction were not the family members, but people with intellectual disabilities themselves. And in hundreds of movie theaters around the country, while that movie was playing, there were pickets. There were T-shirts with the R-word crossed out. There was a lot of conversation about hate speech, about inappropriate speech. And that, if anything else, shows you how far we still have to go.

NEARY: And you raise something interesting I want to get into, which is the degree to which people with intellectual disabilities have taken ownership of this movement on behalf of their own rights. But I do want to take some calls, and then I want to pursue that a little bit further with you.

We are going to take a call now from Andrea in Spokane, Washington. Hi, Andrea.

ANDREA (Caller): Hi. Thanks for taking my call. I just wanted to talk about my experience as a mother. I have a five-year-old with - he has cerebral palsy. And I find I was - the situation that I find myself in with him is that I feel that it's my job and my husband's job to sort of be ambassadors for my son and for all people with disabilities by encouraging people - like when we're out in public, if somebody is staring at my son or, you know, just getting a lot of looks from them, we try to really engage those people in a dialogue, where we encourage them to ask questions and just really see that my son is a normal child, just like any other child. He has the same hopes and desires, and you know, that he's just a person, too.

NEARY: Ann Turnbull, I'm wondering if you can talk with Andrea about this. She has a very young child with a disability, and you, of course, raised a child.

Prof. TURNBULL: Well, Andrea, I think you're doing exactly the right thing. It really warms my heart to hear you talk about being an ambassador because I think the more we create those linkages to people, the more we understand that some people are not intending to be mean-spirited, but they have not had a chance to learn to be sensitive on this issue.

And then another thing that makes me think is, Andrea, you're providing a wonderful example to your son because you are modeling for him what he can do on his own when you're not there. But our greatest hope is that it's not just the responsibility of parents and individuals with intellectual disabilities to be advocates and ambassadors but the classmates, the co-workers, the neighbors, the members of religious communities.

As a society, when all of us take on an opportunity to be an ambassador - one thing I valued about Jay, my son, so very much is he had a wonderful handshake. And it was a different handshake, but he would reach out to people and he would do his special handshake. And that was his gesture of inviting people into his life. And when he died, hundreds of people wrote us about his handshake and what that meant. And so exactly what you're doing, Andrea, of reaching out with a positive attitude of let's find our common ground is building a new tomorrow. And that really was Mrs. Shriver's greatest vision.

NEARY: Thank you so much for calling, Andrea. I appreciate it. We're going to take a call now from Paula, who is in Charlottesville, Virginia. Hi, Paula.

PAULA (Caller): Hi. I'm a special education teacher here in Charlottesville. And actually, I'm aware of your work, Ann. I studied with Marti Snell and Adelle Renzaglia.

Prof. TURNBULL: Yes.

PAULA: Yeah. And so I've heard of your work a long time. I've been a special education teacher with students with moderate, severe and profound handicaps for about 25 years now, and I certainly have seen changes and I've seen improvements over time. I teach a transition program for young adults, so students who are making the transition out into the regular world. And I guess what I would see that I think is a continuing issue is that people want opportunities.

The students I know really want opportunities to be part of the work world, to have adequate transportation, to have the opportunity to have a social life. And one of the things that I see as a real barrier is the - is public policy and funding. When you have a person with a disability who needs an attendant, it's great, if they can go out with one person or two people with disabilities and an attendant. But when you, because of funding, have to have eight people go with one person, then it's like a big class, like a big herd. It's really - it completely negates the - sort of the status of those individuals as adults. And…

NEARY: And Paul Marchand, this is your area, specialty policy - maybe you can address some of the issues that are being raised here.

Mr. MARCHAND: Well, certainly, Eunice Shriver was an incredible champion and should not be pegged solely as the founder of the Special Olympics. She was a true champion in the public policy world as well. Using her connections with her brothers, using her own connections, she was on Capitol Hill time and time again fighting for civil rights, fighting for community-based housing, fighting for health care…

PAULA: Absolutely.

Mr. MARCHAND: …fighting for Social Security. She was just amazing, a great inspiration to those of us who are paid to work on public policy.

NEARY: A lot more work to be done this area though?

Mr. MARCHAND: Oh, immense. As sad as the loss of Mrs. Shriver, hopefully the temporary loss of a brother, Senator Kennedy, has been very problematic in the day, today, as we as a nation strive to figure out what to do with health care, and very important for our constituency, long-term services and supports…

NEARY: Yes, long term, right.

Mr. MARCHAND: …which are link to health care.

NEARY: So you're talking about - and this is a big problem, I know, in this community. Paula, thank you so much for calling in.

PAULA: May I say one more thing?

NEARY: One more, go ahead.

PAULA: It's much the same, I think, in the case of people who are supporting elderly people. When you - when the people who are providing the direct service - that is, the aides and the direct service people - are paid such a low amount of money, it becomes really difficult. So you have people with the level of commitment and the quality of attention that you want to have for people who are very vulnerable. And I think that's another issue that comes up within state agencies and nationally, that the people who are doing this important work need to be being paid because these are our important people.

NEARY: All right. Thanks so much for your call, Paula.

PAULA: Thank you.

NEARY: And we are talking about people with intellectual disabilities and how attitudes have changed or not with regard to them in light of the death today of Eunice Shriver.

And you are listening to TALK OF THE NATION from NPR News.

Let me ask you, Ann and Paul - inherent in some of the conversations that we're having, is there sort of a belief that people with intellectual disabilities are dependent, that they can't take care of themselves? And we were just talking about the need for caretaker. Obviously I would think there's a range of disabilities and so some people may need caretakers more than others. But there's also - what about the move for independence?

Ann, you were saying your son was out on his own, living very independently.

Dr. TURNBULL: When I say out on his own, he had support with in-depth setting. He had a more substantial intellectual disability than a lot of people. And, Lynn, you're exactly right, there is a range. But one of the most exciting directions, what really changed Jay's life for the better and our life, was when he was able to receive the Medicaid funding for him directly to him, so that it could be spent on the life that would best suit him rather than that money going to an agency.

And I believe that one of our greatest future directions is to provide as much choice and control as possible for people with intellectual disabilities. And when those people, similar to Jay, need support in making that happen, then they are surrounded by family and friends who can enable them to have the life that all of us want for ourselves, an opportunity to control our front door and opportunity to have a job where we can contribute and to have valued friends.

NEARY: And Paul, we were starting to get into it a little bit early about the fact that a number of people with intellectual disabilities have the ability to lead some of this movement for their rights.

Mr. MARCHAND: We have a new, relatively new national organization called SABE, Self Advocates Becoming Empowered, and it is totally controlled by people with intellectual disabilities. They are a moving force. They are a growing force. And they are very well, in their own ways, articulating the needs for the supports that they need in order to achieve the independence that they want -that is, economic independence through a decent job; that is, independence and ability to move about their community, have friends that they choose, and not be needing an agency to craft their lives for them based on the funding services that might be coming in their direction.

Dr. TURNBULL: One of their mantras is nothing about us without us. And that's the bottom line.

NEARY: And was just something that Eunice Shriver was supportive of as well, is this - Paul?

Mr. MARCHAND: Well, I think if you see videos, speeches that Mrs. Shriver gave at Special Olympics events or other events, which she attended many, that was basically her theme: achieve to the greatest whether on the athletic field or in real life. And certainly we can point to her as somebody who helped very much turn the corner from dependence to independence.

Prof. TURBULL: Paul, when you say that I'm recalling meetings that the two of us and others had with Mrs. Shriver on many occasions, it was always interesting to me that many people would try to impress Mrs. Shriver by being as esoteric as possible or, you know, dropping names or having the perfect pedigree. And Mrs. Shriver, her bottom line was not having your head in the clouds but having your feet on the ground. And she always would just look people in the eye and say, what's in it for people with intellectual disability, or be practical.

You know, and her bottom line was she wanted people to have better lives. And she didn't want to reward people who were proposing ideas that ultimately were going to make them look good.

NEARY: A great tribute. A great tribute.

Prof. TURBULL: Yes.

NEARY: Thanks so much, Ann Turnbull. Ann Turnbull is cofounder, codirector and distinguished professor at the Beach Center on Disability at the University of Kansas. Paul Marchand is director of the Disability Policy Collaboration for the Arc. Thanks to both of you.

You're listening to TALK OF THE NATION from NPR News.

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Eunice Shriver Changed Views on Intellectual Disability

The accomplishments of John F. Kennedy’s sister range from founding the Special Olympics to establishing major centers to study medical ethics.

By Alexandra Marks/Staff writer of The Christian Science Monitor

August 11, 2009

New York - Eunice Kennedy Shriver changed the way the world views people with intellectual disabilities, and she did it with a characteristic determination and humanity.

Today, people who work in the field, which exists in part because of the work of Ms. Shriver, who died Tuesday, are pausing to recognize her.

"There's no doubt that Mrs. Shriver, her husband, and the entire Shriver and Kennedy families have played instrumental roles over the last 50-plus years of advancing society's views of people with intellectual disabilities," says Paul Marchand, a staff director at The Arc, America's largest parent-controlled organization working on behalf of children and adults with intellectual disabilities and their families.

Shriver's accomplishments range from helping to establish the National Institute of Child Health and Human Development to founding the Special Olympics to establishing major centers to study medical ethics.

"While clearly associated with the Special Olympics, Mrs. Shriver also played a significant role in helping to create opportunities for people with intellectual disabilities to live and thrive in their home communities through advances like making [federal] funding available to finance housing opportunities," Mr. Marchand says.

A middle child of nine in the Kennedy family – which included a president (John F. Kennedy) and two senators – Shriver said of her upbringing in a 1975 Christian Science Monitor profile, "When you're in a big family, you have to hustle all the time."

And she believed in hustling, calling it a "good quality to instill in your children."

Her mother, Rose Fitzgerald Kennedy, wrote of Shriver's "energy, initiative and drive," according to the Monitor profile.

Shriver dedicated her drive to helping Americans, and the world, understand that people who for generations had been institutionalized and regarded as "mentally retarded," "slow," and even "unmanageable" were human beings "who could be valued, loved, and respected by their communities." She told the Monitor that in 1979.

She was motivated, in part, by her sister Rosemary who was mentally disabled.

For many parents of those with disabilities, her work has had a profound impact on the entire family.

"I absolutely don't think we'd be as far as we are today without the Shrivers: They were really trailblazers in making the path for us," says JoAnn Collins of Bradley, Ill., whose twenty-something daughter Angelina has intellectual disabilities. "The Special Olympics is the best organization I've ever been involved with."

Angelina competed in basketball and swimming as a teen. She still competes as a swimmer.

"She recently won a bronze medal in swimming. I always tell her, 'You could save me if I fall in.


You could save your mother!' " says Ms. Collins, who is the author of "Disability Deception: Lies Disability Educators Tell and How Parents Can Beat Them at Their Own Game."

Collins believes that everyone, not just those with intellectual disabilities, could be served well by taking to heart the Special Olympics oath, which says: "Let me win. But if I cannot win, let me brave in the attempt."

"It really is just 'do your best,' " says Collins.

THE ARC MOURNS THE LOSS OF EUNICE KENNEDY SHRIVER

It is with profound sadness that we learned of the passing of Eunice Kennedy Shriver. There is no other single individual in the United States or around the world who has redefined the lives of people with intellectual and developmental disabilities.  Through her personal actions and public initiatives Mrs. Shriver was a pioneer in the fight to empower people with intellectual and development disabilities. She was indefatigable in pressing this cause throughout her life. 


It was she who compelled her brother, President John F. Kennedy, to form a Panel on Mental Retardation in 1961; and it was as executive vice president of the Joseph P. Kennedy, Jr. Foundation that she helped bring dozens of leaders in the disability field to work in Congress to advance federal public policy. 


Over the course of her remarkable career, Ms. Shriver led many successful efforts to improve national civil rights, housing, and employment policies. She knew how to reach across the aisle in Congress and persuade Democratic and Republican presidents alike to develop policies that would help people with intellectual disabilities lead more independent, meaningful lives.


Mrs. Shriver’s extraordinary dedication is reflected in one of her greatest visions – the Special Olympics. At a time when others set limitations on persons with intellectual disabilities, she had the vision and the spirit to embrace what people can do and not what others thought they could not.


While we have lost one of our most venerable champions for the rights of people with intellectual disabilities, her absence is a reminder that we must work harder. The finest tribute to her is for The Arc and other advocacy organizations to carry on her work with greater resolve – to realize her vision of full inclusion for people with intellectual disabilities in every phase of society.

To read remembrances of others and share your own at a website recently established to honor Mrs. Shriver's legacy, go to www.EuniceKennedyShriver.org


Peter V. Berns
Executive Director
The Arc of the United States
August 11, 2009

New Professional Competencies for Teachers of Students with Autism

August 10, 2009 -- The Council for Exceptional Children (CEC) and the Autism Society announced the publication of professional competencies for teaching students with autism spectrum disorders at the Autism Society’s 40th National Conference on Autism Spectrum Disorders in St. Charles, Ill. The competencies will be incorporated into CEC’s resource on highly qualified teachers, What Every Special Educator Needs to Know.

“As the incidence of autism has increased, universities and colleges created their own version of competencies to guide program development,” said Cathy Pratt, PhD, Director of the Indiana Resource Center on Autism and the Autism Society Board Chair, who worked on the competencies. “With the release of these competencies and through the leadership of the Autism Society and CEC, there is now a national standard that can be used for both course and program creation and for professional development in schools,” Dr. Pratt said.

These professional competencies contain the knowledge and skill base that professionals entering practice or assuming advanced roles should possess to practice safely and effectively. These competencies are based on evidence-based autism research and will be part of the CEC and CEC/NCATE accreditation that universities go through in designing their special education curricula.

“CEC is delighted to have collaborated with the Autism Society in developing a set of knowledge and skills that will speak clearly and unambiguously to the field,” said Richard Mainzer, Associate Executive Director of Professional Services at CEC. “Before being approved, the standards went through a rigorous process that included documenting the supporting literature and surveying practitioners. The result is the best of the best practices.”

Lee Grossman, President and CEO of the Autism Society, agreed. “These competencies will have tremendous impact in local schools,” said Grossman. “Parents can be assured that going forward their children’s teachers will be trained according to nationwide, evidenced-based standards.”

The competencies were drafted through a grant from the Autism Society and with support from the Ohio Center for Autism and Low Incidence (OCALI). The Autism Society’s Network of Autism Training and Technical Assistance Programs (NATTAP) conducted research and technical assistance in this process.

Family members and individuals on the spectrum were also involved in the development process. NATTAP will be integral in the implementation and training of the use of competencies in school districts. The competencies will also soon be part of the Autism Internet Modules (www.autisminternetmodules.org), a platform with 80 modules under development which will provide evidence-based content based on the competencies. The competencies also will be included in textbooks that will be used in universities classrooms.

About the Council for Exceptional Children: The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice. To learn more about CEC, please visit www.cec.sped.org.

About the Autism Society: The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. For more information, visit www.autism-society.org.

About NCATE: The National Council for Accreditation of Teacher Education (NCATE) currently accredits 632 colleges of education with nearly 100 more seeking NCATE accreditation. NCATE is a coalition of 33 Member Organizations of teachers, teacher educators, content specialists, and local and state policy makers. All are committed to quality teaching, and together, the coalition represents over 3 million individuals. The U. S. Department of Education and the Council for Higher Education Accreditation recognized NCATE as a professional accrediting body for teacher preparation.

About Autism: Autism is a complex neurodevelopmental disability that typically appears during the first two years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.

Analysis of Medicaid Services to People with Disabilities Show Mixed Results

WASHINGTON, Aug. 5 /PRNewswire-USNewswire/ -- United Cerebral Palsy (UCP) released today the 2009 Case for Inclusion Report (www.ucp.org/medicaid), ranking all 50 states and the District of Columbia for the Medicaid services they provide to their Mental Retardation/Developmental Disability populations. The report finds that all states have room to improve outcomes and services for individuals with intellectual and developmental disabilities. While too much money is still spent isolating people in large institutions and waiting lists for services are increasing overall, real and notable progress has been made in just one year. "Still, too often the goals of independence, productivity and community inclusion are at odds with reality," said CEO Stephen Bennett.

The top and bottom ten states in terms of quality of Medicaid service provided are;

1) Vermont; 2) Arizona; 3) Alaska; 4) New Hampshire; 5) Massachusetts; 6) Michigan; 7) California; 8) Hawaii; 9) Colorado; 10) Connecticut

42) Indiana; 43) Tennessee; 44) Nebraska; 45) Ohio; 46) Louisiana; 47) Illinois; 48) District of Columbia; 49) Texas; 50) Arkansas; 51) Mississippi

Five states shifted by at least five places in the rankings from 2008 to 2009, and 15 states shifted at least five places in the rankings from 2007 to 2009.

Some other key findings of the report:

• Positively, there are 1,536 fewer Americans living in large state institutions (more than 16 beds). However, there remain 169 large institutions (4 fewer) housing 36,175 Americans.
• Nine states - Alaska, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont and West Virginia, and the District of Columbia - have no large state institutions. Thirteen states have only one large state facility remaining.
• Fifteen states report having a residential services waiting list so large that their programs would have to grow by at least 25 percent to accommodate the need.

About UCP:

United Cerebral Palsy is one of the largest health organizations in America and has been committed to change and progress for persons with disabilities for 60 years. Its mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities. Reflective of its long history of service and support to people who experience all types of disability, more than 65% of the people served by UCP have disabilities other than cerebral palsy. The nationwide network of UCP affiliates provide over $1 billion in direct services to 176,000 people with disabilities and their families daily. The national office advocates at the federal level on behalf of the 54 million Americans with disabilities.

AL Disability Services Lawsuit on Waiting List Settled

August 4, 2009

The state government in Alabama has settled a 9-year-old lawsuit over the lengthy waiting list for people with mental disabilities to obtain services. The state will not be required to spend additional funds on services.


In a copy of the settlement from Attorney General Troy King, the state will be required to establish a centralized phone number for people to contact about receiving services; notify applicants within 90 days if they are deemed eligible for services; and offer an appeals process to families in need of services.

The suit accused the state of violating federal law by not having a range of adequate services – from in-home support to group homes.

According to Thomas Holmes, president of the ARC of Alabama, the waiting list has climbed from about 1,600 in 2006 to 2,100 in July.

Governor makes executive appointments
The Daily Citizen, Dalton, GA

July 31, 2009 ATLANTA – Gov. Sonny Perdue announced today the following executive appointments.


Board of Behavioral Health and Developmental Disabilities


Mary Burns, M.D., 46, Atlanta – Burns is engaged in private practice and serves as a clinical assistant professor of psychiatry at Emory University. She is a member of the American Psychiatric Association, Georgia Psychiatric Physicians Association and Atlanta Women’s Medical Alliance. She served as chairman of the Board of Human Resources and as a member of the Mental Health Ombudsman Nominating Committee. Burns earned a bachelor’s degree from the University of the South and a medical degree from the Mercer University School of Medicine. She completed her residency in psychiatry at Duke University and a fellowship in child psychiatry at Harvard University School of Medicine. She and her husband, Eric, have two children.


Don Cole, 55, Cordele- Cole is president and chief executive officer of RTT Associates, Inc., a management and information technology consulting firm. He has also served as pastor of Southern Baptist Churches in Georgia and in the former Panama Canal Zone. Cole serves on the Board of Directors of the Cordele/Crisp Chamber of Commerce and served on the Georgia Board of Human Resources from 2003 to 2008 as secretary and chairman of the Division of Family and Children Services Committee. Cole received the Annette Bowling Advocacy Award from the South Georgia Easter Seals in 2004 and the National Easter Seals Outstanding Advocate of the Year Award in 2006 for his work to add 3,000 waiver slots to provide critical services for Georgians with developmental disabilities. Cole earned a bachelor’s degree and a master’s degree from Georgia and a Master of Divinity Degree from Southwestern Baptist Theological Seminary. He and his wife Leslie, have one son.


Justin D. Neal, 29, Roswell – Justin is a financial advisor at Northwestern Mutual Financial Network. He serves as a board member for TeenPact Leadership School and as a college unit director for Northwestern Mutual’s internship program in Atlanta. He also volunteers as a speech and debate coach for high school students and previously served on the Board of Human Resources. Justin graduated summa cum laude from Berry College with a bachelor’s degree in Economics. He is married to Lindsey Neal.


Deirdre K. O’Brien, 48, Waycross – O’Brien is executive director of The Arc of Georgia and is also a licensed nurse practitioner. She is a member of the American Association on Intellectual and Developmental Disabilities and the Olmstead Planning Committee and volunteers with Habitat for Humanity and Kiwanis. O’Brien earned a bachelor’s degree from Dalhousie University and a master’s degree from the University of Alabama at Birmingham. She and her husband, Randall, have two children.

Susan K. Radovich, 66, Statesboro – Radovich is a retired guidance counselor. She is a member of the Friends of Statesboro, Bulloch County Library Board, and the “Sprig-n-Dig” garden club. She has served as a member of the Pineland Community Service Board for ten years and most recently served as chairman. Radovich earned a bachelor’s degree and a master’s degree from Indiana University, and Master Level School Counseling Certificate from Georgia Southern University. She and her husband, Frank, have two children.

Autism: Colorado school districts turn to Joshua

Districts turn to a private school to teach children struggling with autism

By Jeremy P. Meyer
The Denver Post

"Are you ready?" Joshua School teacher Katharine Barnes asked the 11-year-old boy hiding behind shopping carts at the entrance to a SuperTarget store.

The boy has autism, and public settings make him freeze in fear. This shopping trip is part of his therapy at the Joshua School in Englewood, the only private school for children with autism in Colorado that is cleared by the Colorado Department of Education to receive state and district education funds.

"He has so much anxiety," Barnes said. "He's never come to a place this big. You can just see that inner battle."

As shoppers passed unaware, the boy crawled to a rack and then to another aisle and waited. Eventually, he stood and gingerly took a few steps. Before long, he was walking deep into the store with a smile on his face.

"That just makes you feel so good," Barnes said.

This year, 18 school-age kids and two preschoolers are enrolled in the 4-year-old Joshua School.

Many Joshua School students have extreme behavioral and learning disabilities. The curriculum includes intense therapies, step-by-step instruction and weekly outings for those struggling with some of the most profound effects of autism or related disorders.

The $48,000 annual tuition bill for 15 of them is covered by 11 Colorado school districts.

"(The tuition) is a good example of the costs that go into educating certain students," said Ed Steinberg, special education director for the state Department of Education.

The number of Colorado students identified with autism grew from 595 in 2001 to 1,504 in 2005 — an increase of 152 percent, according to the state Department of Education.

Although tuition is expensive, school districts are increasingly turning to specialized private schools for help teaching students who have autism.

"I am quite frankly surprised that we haven't seen more schools, private or eligible facilities, starting up," Steinberg said.

In 2004, a family from Berthoud made headlines when the parents moved their autistic son from the Thompson School District to a specialized private school in Boston and petitioned the district to pay the $130,000 tuition.

Initially, the courts said the district must pay because the boy's educational needs weren't being met in Colorado. A higher court later overturned the decision.

The controversy drew attention to the lack of special education programs in public schools to meet the needs of a growing number of children with severe autism.

"I think the public schools overall are doing a terrific job meeting the challenges," Steinberg said. "But there are some kids who need something above and beyond."

State help isn't enough

Colorado has a handful of private schools or facilities that specialize in autism. Some school districts have created programs for students with the disorder.

In 2006, the legislature set aside $2 million a year to reimburse school districts for placing children in out-of-district programs that cost more than $40,000 per student.

In the first year, 12 districts asked for help for 47 students, but money was available for only 30 students. Last year, 19 districts requested help for 71 students, but money was available for only 31 students.

Eighty percent of the Joshua School students have their tuition paid by their school districts.

Karen and Tom Carter say they can afford the price for their 7-year-old daughter, Lauren.

"My husband has a good job,

Ethan Torchia, 5, smiles up at Kendra Alderink, a teacher at the Joshua School in Englewood. At left is his classmate, Jack Rist, 5. The school's early intervention program has only two students because most parents can't afford the $45,000 tuition. (The Denver Post | Judy DeHaass)

and we make sacrifices," Karen Carter said. "We would do anything to keep (Lauren) here."

Lauren began school in Jefferson County but moved to Joshua because her parents thought she was not getting adequate instruction in her kindergarten class.

At Joshua, there are three teachers for every four students, and the intense therapies have helped Lauren, who no longer must be spoon-fed.

She now can count to 10, recognize letters and sit with her family at restaurants without creating a commotion.

"She has made more progress this year than she has her previous six years," Carter said.

The Joshua School this year started an early intervention program for kids ages 2 1/2 to 5. But the $45,000 price tag is too expensive for most parents, who cannot receive school district money for the preschool program. Only two children are enrolled.

Joshua School co-founder and executive director Jason Gruhl said the school might develop scholarship programs and more specialized education programs that would be less expensive.

Recently, in the preschool class, teacher Kendra Alderink worked with Jack Rist, 5, on a therapy called receptive identification.

Alderink set a crayon and miniature chair on a table and asked Jack to spot the crayon. The boy hesitated before grabbing the crayon and squirming with joy.

"Good," Alderink said, tickling the nonverbal boy and waiting for him to look her in the eye before rewarding him with a piece of fruit snack.

"It helps him to realize that these objects have names and meaning, so when he is in a group setting and is asked to pick up a crayon, he will know what it is," said Robin Talley, the school's director of early intervention.

In a few weeks, Jack will enter a full-day kindergarten in Adams 12 School District. His parents said they cannot afford to pay the Joshua School's tuition anymore.

His dad, Vonn Rist, said he fears that it would take something bad happening in the public school classroom for Jack to return to Joshua and have his tuition paid by his home school district.

Every parent of a Joshua School student who has tuition paid by a school district has a public school horror story to tell, Rist said, from arrests to the use of restraints.

"It's a dilemma for school districts," Rist said. "You can't blame them. They don't have the funding or training to do the things that the Joshua School does."

Jeremy P. Meyer: 303-954-1367 or jpmeyer@denverpost.com

(AP) – 6 hours ago

MOBILE, Ala. — Officers who used pepper spray and a Taser to remove a man from a store bathroom found out only later he was deaf and mentally disabled and didn't understand they wanted him to open the door, police said Tuesday.

A spokesman for the Mobile Police Department said the officers' actions were justified because the man was armed with a potential weapon — an umbrella.

But relatives of Antonio Love, 37, have asked for a formal investigation and said they plan to sue both the police and the store.

"I want justice," Love's mother, Phyllis Love, said Tuesday.

The woman said her son hears only faintly, has the mental capacity of a 10-year-old and didn't realize that it was the police who were trying enter the bathroom.

"He thought the devil was out there trying to get in to get him," she said.

Antonio Love, in a written statement and in a television interview given in sign language about the confrontation, said he had a badly upset stomach last Friday and went into a Dollar General store to use the restroom.

Police spokesman Christopher Levy said Tuesday store workers called officers complaining that a man had been in the bathroom for more than an hour with the door locked. Officers knocked on the door and identified themselves, but the person didn't respond.

Officers used a tire iron to open the door, but the man pushed back to keep it shut. Officers saw the umbrella and sprayed pepper spray through a crack trying to subdue the man, Levy said. They shot the man with a Taser when they finally got inside, he said.

Officers didn't realize Love was deaf or had mental problems until he showed them a card he carries in his wallet, Levy said. He was arrested on a charge of disorderly conduct, but officers released him and took him home after a magistrate refused to issue a warrant.

Levy said officers were justified in using force against Love since he had an umbrella.

"The officers really worked within the limits of our level-of-force policy," he said. "We had no information about who this guy was."

Phyllis Love said her son, who has worked in the garden department at a Lowe's store for several years, was scared when he realized someone was trying to get into the bathroom with him. He put water on his face and on the floor after being hit with pepper spray, she said.

"He didn't know it was a policeman until they busted the door in on him," she said. "He had a knot on his head from where it hit him."

Levy said police wish the confrontation had never occurred. The internal investigation will include a review of Love's complaints that officers laughed at him after realizing he was deaf, he said.

"We'll make whatever efforts we can to resolve this situation, hopefully so this man will be able to trust police in the future so we can help him. Obviously, it's going to be a rough road," he said.

Copyright © 2009 The Associated Press. All rights reserved.

Disabilities agency culls backlog of people seeking aid

Arc of Md. says families have waited more than 2 decades

By Olivia Bobrowsky Baltimore Sun reporter

July 27, 2009

A state agency is sorting through its waiting list of 19,000 developmentally disabled people to see if they still need services, a step that highlights a decades-old backlog of families seeking scarce state funding.

Starting with those in the highest need category, the Developmental Disabilities Administration is working its way through the list, a process that is estimated to take six months.

"It will help us with planning for services," Executive Director Michael Chapman said. Those services range from behavioral support services to medical day care, but Chapman said most people are seeking home support services or funding for a day care program. Developmental disabilities are an array of chronic conditions that start early in life, including mental retardation, autism and cerebral palsy.

The clogged list has kept families from help for more than two decades, said Cristine Marchand, executive director of The Arc of Maryland. The first legislation concerning the waiting list funded services for 250 people in the late 1970s. In 1998, with 6,000 people on the list, then-Gov. Parris N. Glendening poured $68.4 million into a five-year initiative.

But since that boost, help has been scarce. Funding dropped from about $18 million in fiscal 2003 to about $700,000 in 2005, according to General Assembly records. After 2005, the pool slowly increased, to about $2.8 million for fiscal 2010.

In the meantime, 1,000 people are added to the list every year, Marchand estimates.

Chapman stressed that no one who deserves a spot on the list will be kicked off. Instead, they're looking to weed out applicants who have moved, no longer need assistance or need different services.

Michele Hill, a Dundalk resident who's coordinating an End the Wait Now campaign, put her 12-year-old autistic son on the list five years ago, but since then, his needs have changed.

"Before, we were dealing with a child who was 7," she said. "He's aggressive. He's now 5 foot 2 and 105 pounds, and I'm not getting any younger and he's not getting any weaker."

So far, the DDA has sent letters to about 6,000 people. Chapman said they've already covered those most in need of help, a status called "crisis resolution," and moved on to the next category, called "crisis prevention."

Larissa Creed is a 24-year-old Rockville woman who falls into that crisis resolution group. Her parents, who are in their 60s, have been waiting 10 years for in-home support - someone to feed Larissa, change her diaper and keep her company while they work.

But Larissa won't qualify for state-funded assistance until one of her parents is dead and the other one is dying, said her mother, Diane Creed.

"I can understand that they [the DDA] would want to update their records, however I don't feel encouraged that it's going to make a difference as far as getting people the services that they need," Creed said. "It's a money issue."

Chapman could not specify how many people have been culled from the list. He is putting together a report for the legislature.

Even though the DDA is significantly underfunded, Marchand said neither Maryland legislators nor the governor have helped the situation. Del. William A. Bronrott, a Montgomery County Democrat, proposed an alcohol tax increase of 5 cents per drink to raise about $80 million each year for the waiting list, but the legislation died during the 2009 session.

"We feel like pingpong balls between the administration who says they don't have the money and the legislature that says they're not raising taxes - 'go back to the governor,' " Marchand said. "And meanwhile, people continue to wait."

Diane Creed, a full-time tax analyst who's actively involved in the End the Wait Now campaign despite her demanding schedule, said she's working as hard as possible to bring the issue to the attention of the governor. She is thinking about organizing a march on the governor's office.

"We would take our sons and daughters to the governor's office and just say, 'You know, here they are. ... Here's the diapers, here's the food. They all like to be pushed around outside, and they need arts and crafts. We'll be back after work to pick them up,' " Creed said. "The intention is to make it real. People are not asking for the moon. They're just asking for help."

Copyright © 2009, The Baltimore Sun

Hailing Disabilities Act

The Daily News

July 24, 2009

Former President George H.W. Bush has some kind words for the new President, who today hailed the Americans with Disabilities Act that Bush signed 19 years ago.

“I congratulate President Obama for taking some time today to remember the 19th anniversary of the Americans with Disabilities Act. There is no place in our society for prejudice of any kind, yet it was not that long ago when Americans with disabilities were often not given equal rights and opportunities. Whether the cause was ignorance or indifference, it was not acceptable. We can all take pride in how much the ADA has accomplished, which is evident every time you attend a sporting event, ride the subway, or go to work. Yet, there is always more to be done, which is why it’s good not only to celebrate our successes, but to look forward at what still must be done. As long as we never forget that every life is a miracle and each person has something to contribute, we will finish the job.”

- Michael McAuliff

Ten years ago last March, "Roderick Newton and Julian Williams went to a car wash in Pleasant Grove in Dallas looking for someone to rob." So reminds the Texas Attorney General's media release issued last week, which recounts the reason Newton is scheduled to be executed by the state Thursday evening: After forcing Jesus Montoya to withdraw $200 from an ATM, Newton drove the man to a vacant field, demanded he remove his gold chain and cross, then shot him repeatedly. Newton was convicted of capital murder in March 2000.


But a massive petition filed moments ago in the Criminal District Court No. 2 of Dallas County and in the Court of Criminal Appeals of Texas in Austin insists Newton's should receive a stay of execution on the grounds that he's mentally retarded. The Supreme Court ruled in 2002 that the execution of the mentally retarded is a violation of the Eighth and Fourteenth Amendments, which include a prohibition against the use of "cruel and unusual punishment."


Three years later, a court assigned Newton's case to attorneys David Finn and Clint Broden, who insist that not only had the previous court-appointed attorney performed shoddy defense work, but that Newton had an IQ of 61.

In an "intellectual assessment" report delivered to defense counsel last week, San Antonio neuropsychologist Gilbert Martinez wrote that "Mr. Newton's general cognitive ability is within the extremely low range of intellectual functioning"; Martinez also wrote that Newton was "occasionally childlike" during his examination. Sub-average intellectual function is generally defined as an IQ around 70 or below, according to American Association on Intellectual and Developmental Disabilities.


The petition asks that the court "stay his execution ... and remand the case to the trial court for an evidentiary hearing."

Case of autistic Marine brings recruiting problems to the forefront

Faced with quotas, a few recruiters are taking shortcuts that allow those unfit for service into the military.
By Tony Perry

Reporting from San Diego -- A few days after he arrived at boot camp here, Joshua Fry no longer wanted to be a Marine.

He was confused by the orders drill instructors shouted at him. He was caught stealing peanut butter from the chow hall. He urinated in his canteen. He talked back to the drill instructors. He refused to shave.

Finally, he set out toward the main gate as if to head home. He was blocked, but now he had the chance to tell his superiors a secret: He was autistic. Fry figured this admission would persuade the Marines to let him return to the group home in Irvine for disturbed young adults where he was living when he enlisted.


Instead, he was sent back to Platoon 1021, Company B. The drill instructors became more helpful, and in April 2008 he finished the grueling 11-week regimen and was sent to Camp Pendleton for infantry training.


Within weeks he was under arrest for desertion and possession of child pornography.


Documents in Fry's court-martial case detail a troubled upbringing and a Marine career that was both improbable and misbegotten.


But far from being a routine instance of a young man unable to adjust to military life, the Fry case has exposed an awkward issue for the Marines and other military services: Recruiters sometimes take ethical shortcuts to make their quotas at a time when Americans have tired of the nation's wars and finding recruits is difficult.


According to court documents, Fry's recruiter knew he was autistic. The Marine Corps is investigating the recruiter's conduct.


Compared with the large number of enlistees each year, the number of allegations against recruiters is small and the number substantiated even smaller. But a report by the State Department, prompted by concerns in Congress, concluded that even a small number of misconduct cases "fosters distrust of the military [and] such distrust makes recruiting for all even more difficult."


The Marine Corps has the highest percentage of substantiated misconduct claims. In the last three fiscal years, 265 Marine recruiters have been relieved of duty for misconduct, most commonly for hiding negative background factors.


Autism is not among the conditions that automatically bar a would-be recruit. But, if Navy doctors had known of the diagnosis, Fry would have been evaluated more skeptically during the pre-boot-camp medical examination and most likely would have been rejected.


In 2006, a psychiatrist for the Orange County mental health agency wrote that, although Fry "is high-functioning for a child with autism, he exhibits the typical characteristics of anxiety, impulsive behavior, distractibility, very poor social skills and an inability to read social cues and interact appropriately in social situations."


Fry, now 21, has already spent a year in the brig at Camp Pendleton. His next hearing is July 27. He also faces a third charge added later: fraudulent enlistment. The charge is based on Fry not telling his recruiter he had received counseling for an addiction to child pornography. Under military rules, he is not allowed to talk to the media.


His grandmother, Mary Beth Fry of Newport Beach, said Fry is not doing well.


"He's had a lot of problems being locked up," she said. "He's on psychotropic drugs. He's been diagnosed as bipolar and is having trouble holding it together."


When he was 18, his grandmother went to court to become Fry's legal conservator. Under the conservatorship, Fry is prohibited from signing contracts without his grandmother's approval.


Mary Beth Fry said that she told the recruiter her grandson needed her approval to enlist, but that he ignored her.


A 35-page motion filed by Fry's lawyer details a troubled childhood: parents who were drug addicts, an evaluation of autism at age 8, multiple stays in foster homes, behavior problems at Newport Harbor High School, an arrest for stealing iPods and a court-ordered stay at a facility for psychologically disturbed youth that lasted 15 months.


Mary Beth Fry said she was unaware that the recruiter contacted her grandson while he was living in the Irvine group home. "A lot of things went on that I didn't know about when he was in Irvine," she said. He enlisted in January 2008.


Fry's lawyer, Michael Studenka, sought to have the charges dismissed and Fry discharged on the grounds that he should not have been allowed to enlist because he cannot legally sign contracts. A Marine judge rejected that motion.


Studenka declined to discuss the case.


But Kevin McDermott, an Orange County lawyer who is familiar with Fry's case and has represented military clients who felt misled by their recruiters, said potential enlistees who would have been rejected a few years ago are now allowed to enlist, as recruiters struggle to fill their quotas.


"These recruiters are under enormous pressure," he said.


According to the Pentagon, there were 2,426 claims of recruiter misconduct in fiscal 2007, when 22,218 recruiters brought 319,229 recruits into the all-volunteer services. Of the claims, 593 were substantiated. The Marine Corps, with 43,562 recruits and 2,783 recruiters, had 211 claims of recruiter misconduct, with 118 substantiated. The Marines were the only service where more than half of claims were substantiated.


The Marines declined to discuss the Fry case but, in a statement, said, "We want only those who are qualified: morally, mentally and physically. Any recruiter who circumvents our layers of screening to place an unqualified applicant into our ranks only does detriment to the quality of our force."


Mary Beth Fry said she hopes a plea bargain can be worked out that will bring her grandson home soon.


"I just want him out of the Marine Corps so we can get him the care he needs," she said.


tony.perry@latimes.com

Governor greeted by Glavin Center supporters

By Jeff Malachowski/Staff Writer

Shrewsbury Chronicle

Thu Jul 09, 2009, 04:11 PM EDT

SHREWSBURY - Relatives of Glavin Center residents were anxious to ask Gov. Deval Patrick to keep the center open during the governor’s town hall tour stop at Shrewsbury High School last night.

In December, the Department of Mental Retardation announced that within four years the state will close the local facility for people with developmental disabilities, which houses about 50 residents, as well as the Fernald Center in Waltham, the Monson Center in Palmer and the Templeton Center in Baldwinville.

The residents will be transferred into community settings or to one of the two remaining state institutions in Wrentham or Hawthorne.

Of the more than 100 people in attendance at Patrick's fifth stop on his 15-town tour throughout the state this summer, many wore “Save Glavin” T-shirts.

Martha Douty-Perez told Patrick her 31-year-old sister, who is blind and suffers from mental retardation and autism, lives at the Glavin Center and is very comfortable.

``Being at the Glavin Center is the best thing for her,'' said Douty-Perez, a Framingham resident. ``We wouldn't want to see her go anywhere else.''

Douty-Perez said moving the residents of the facility away from the center and the region will not be beneficial.

``Keeping something like this open in central Massachusetts is vital,'' she said.

While cautioning that the move to shut down the facilities is not about cost, Patrick said closing the centers will put residents in more comfortable settings and free up resources to better serve the Department of Mental Retardation's other 33,000 clients who receive community-based services.

``For some, an institutional setting is better,'' said Patrick. ``For many, a home or community based setting is a better setting. This is not mainly driven by cost.''

Patrick also stressed those leaving the facilities will be cared for.

``Nobody is talking about shutting it down and pushing people out on the curbs,'' he said.

The governor agreed to tour the facility in the future to get a first-hand look and to study the services the Glavin Center offers.

During his only scheduled stop in central Massachusetts on his summer meeting tour, Patrick also addressed questions about the budget and the state's growing industries.

The state is currently facing a $9 billion budget gap between last year's and this year's budget and even if every state employee was laid off, Massachusetts would still be experiencing a multi-billion dollar budget shortfall, Patrick said.

``We're dealing with the most profound economic situation since the depression,'' he said.

Patrick said the state is investing in biotechnology and clean energy in hopes of creating jobs. In May, close to 5,000 jobs were created in the state, the first time the Commonwealth has seen an increase in jobs during the past year. Patrick noted that creating jobs is one of his top priorities.

``We need to get people back to work,'' he said.

Turkey service owners: Iowa laws don't apply to us

By CLARK KAUFFMAN • ckauffman@dmreg.com • July 8, 2009

Faced with a $900,000 fine for the alleged exploitation of its mentally retarded workers, the owners of Henry's Turkey Service say the company is not subject to Iowa's labor laws.

Iowa Workforce Development imposed the fine in May after alleging that Henry's parent company, Hill Country Farms of Goldthwaite, Texas, had paid 34 mentally retarded men less than the minimum wage to work in the West Liberty Foods plant in eastern Iowa.

The agency also accused the company of making improper deductions from the workers' paychecks and failing to provide the workers with pay stubs.

The case will now go to an administrative law judge for a hearing, although it could be a year before such a hearing is held and a decision is reached.

An attorney for Hill Country Farms said in a written response that the company "is organized, operated and controlled according to the laws and regulations of the State of Texas" and is not subject to the Iowa laws it's accused of violating.

The company maintains that all of the Iowa workers who lived for decades in a bunkhouse in Atalissa, near the West Liberty plant, were technically residents of Texas and that their real employer was West Liberty Foods, not Hill Country Farms.

State and corporate records support some elements of that argument but undercut other aspects of the company's case.

For example, some of the Atalissa men were enrolled in Texas Medicaid - a program that in theory is open only to residents of Texas. But the W-2 tax forms in which the men's wages were reported to the Internal Revenue Service indicate that Hill Country Farms, not West Liberty Foods, was the employer.

It's also possible that inaction by state and federal officials over the past 35 years will help Hill Country Farms' defense. The company claims that it had "cooperative arrangements" with the U.S. Department of Labor with regard to the wages it paid and that it had "never received any complaints from the State of Iowa" alleging a failure to comply with Iowa laws.

Eleven state and federal agencies continue to investigate Henry's Turkey Service. Muscatine County prosecutors are reviewing evidence from state health inspectors who allege the Atalissa bunkhouse was being run as an unlicensed care center.

Henry's Turkey Service was launched in the late 1960s when the Texas Rehabilitation Commission began paying the company to take hundreds of young, mentally retarded men from state institutions and train them to be placed in labor camps in Iowa, Illinois, Kansas, Missouri and South Carolina.

As a labor broker, Henry's collected the wages paid by companies, such as West Liberty Foods, where the work was being performed. Henry's then deducted from the men's wages the cost of their food, lodging and care.

After deductions, some of the Atalissa men received as little as 44 cents an hour for their work in the West Liberty turkey plant.

The state fire marshal closed the bunkhouse in February, citing unsafe living conditions. All of the 21 workers at the bunkhouse were judged to be dependent adults who needed assistance or supervision with daily living.

The fine is the largest imposed by Iowa Workforce Development since October 2008 when it fined Postville's Agriprocessors plant almost $10 million for allegedly improper payroll deductions.

Obama supports new long-term care benefit

By RICARDO ALONSO-ZALDIVAR

WASHINGTON (AP) — Moving to broaden the scope of the health care overhaul, President Barack Obama threw his support Tuesday behind the creation of a program to help families struggling with long-term care costs.

The voluntary insurance program — sponsored by Sen. Edward M. Kennedy, D-Mass. — would pay a modest daily cash benefit of at least $50 that people could use for a range of in-home services or nursing home expenses.

Kennedy's own Senate health committee will include the long-term care provisions in its version of health care legislation. But other lawmakers could prove a tough audience. The Congressional Budget Office is already warning that premiums won't be enough to cover benefit costs after the program has been in operation for a few years.

Obama's support could convince skeptical lawmakers to take a second look at Kennedy's idea, known as the Community Living Assistance Services and Supports Act, or CLASS Act, for short.

In a letter to Kennedy released Tuesday, Health and Human Services Secretary Kathleen Sebelius said that Obama believes the long-term care program is an "innovative" idea that should be "part of health reform."

"Enactment of this important legislation would expand resources available to individuals and families to purchase long-term services and supports to enable them to remain in their own homes in the community," Sebelius wrote.

Supporters say the insurance program could help ease some of the pressure on Medicaid by helping elderly and disabled people stay in their homes. Medicaid pays most of the nation's nursing home bills.

"You can't really reform health care without addressing long-term care," said Larry Minnix, CEO of the American Association of Homes and Services for the Aging, which represents nonprofit care providers.

As Kennedy envisions it, workers and their spouses would be able to enroll in the insurance program for a monthly premium of $65. For middle-aged people, that's well below the cost of private long-term care insurance. People would have to pay premiums for at least five years before they could claim benefits, and they would have had to be working at least three of those years.

Beneficiaries would qualify for assistance if become disabled and unable to perform at least two or three basic activities such as bathing or dressing.

Because of the five-year vesting period for benefits, congressional budget analysts estimate the program would run a fat surplus in its first 10 years. Soon after that, it would get swamped by claims. To keep the program financially solvent through 2050, the government would have to raise premiums significantly, to $85 a month, and keep benefits at the $50 daily minimum, the budget office said. And even with those measures, the program might still increase the deficit.

Copyright © 2009 The Associated Press. All rights reserved.

"Stacey's Bookstore. That's No. 1, that's a wonderful ... it's the biggest bookstore I ever been to," Medina says. "A wonderful store. You can work as you want — long as you want."

Medina, 52, has developmental disabilities. He was working as a janitor at the independent bookstore that was a San Francisco institution for 85 years until it went out of business in March.

It's a tough time for anyone to find a job. And for adults with developmental disabilities — like autism and Down syndrome — it's even tougher. Advocacy groups estimate that two-thirds of the developmentally disabled are unemployed.

The recession is making it even more difficult for those who want to find a job because almost every state is considering slashing funding for programs that help to place people with disabilities in jobs.

Joy From A Day's Work

The routine at Stacey's Bookstore was very important to Medina. In fact, when Stacey's cut back on all of its employees' hours three years ago, Medina continued to work his longer shift despite repeated reminders.

"In my room I keep a picture from Michael — look at his smile; he is happy," says Gerta Medina, his mother. She's holding a picture of him at his old job at Stacey's. She's in her 70s and says she worries about her son's future.

"Oh! All the time, all the time," she says. "So that's why I would say a job is important."

She says they both cried when he lost his job.

Help From A Job Coach

Gerta Medina knows it's a tough market, but she's thankful that Michael has help finding a new job. He is a client of The Arc, a national nonprofit that offers support services to people with developmental disabilities.

Today, his job coach from The Arc, Nina Asay, is taking him to the law firm Hanson Bridgett for a job assessment.

Medina is filling in for a coffee attendant. The work includes clearing conference rooms and doing dishes.

Today, he's getting high marks for handling the fluctuating stress level.

"What happens if there are dishes in the sink right there?" Asay asks Medina.

"I put it in my cart," he answers.

"Put it in your cart. Correct," she responds.

Asay says this evaluation will help her figure out the ideal work environment for Medina.

"One person may say they like an office setting, but when you bring them to an office setting, it doesn't quite work out," she says. "So it's really nice that we have this site to assess our clients to see if they can fit in this setting."

Assistance That Could Dwindle

A few days later, Asay accompanies Medina to an interview for a janitor's job at a senior housing center. She gives him a last-minute pep talk.

"And also, if you still can't get it, you can always look to me and I can help with that as well," she tells Medina.

"That way I could ask you for your advice and ..." he says.

"Exactly. Like we did last time," Asay says. "That's what I'm here for, is to help you out. OK?"

But the kind of help Asay offers is at risk.

Peter Berns is executive director of The Arc of the United States, a group that supports about 122,000 people with developmental disabilities in finding general employment. That makes it the largest nonprofit network doing this work. Despite demand, Berns says there hasn't been enough funding to increase those numbers in years.

And now there's a danger of backsliding. The San Francisco chapter alone says it could lose $3 million — a third of its state funding — by September.

"So someone may find that they used to have a job coach to help them, and now the funding for that job coach isn't there anymore," Berns says.

Overcoming Stereotypes

These economic challenges are an additional hurdle. But the biggest obstacle to placing people in jobs is negative stereotypes, says John Kemp of the U.S. Business Leadership Network, a national organization that assists with hiring and retaining employees with disabilities.

"The first response of the unenlightened employer is, 'No way. We have too many complex issues here, too many business processes that they will not be able to understand and execute,'" he says.

But Kemp says there are bright spots. Large national chains including Walgreens, McDonald's and Safeway continue to create opportunities for people with developmental disabilities.

And there's some good news for Medina, too. He was just offered a job as a bagger at the grocery chain Trader Joe's. He's already hard at work.

Disabled celebrate department's name change
By Nandini Jayakrishna

Globe Correspondent / July 1, 2009

 

With the start of the fiscal year, the state Department of Mental Retardation has taken on a new name.

The agency, which serves developmentally disabled children and adults, adopted the name Department of Developmental Services yesterday, signaling a victory for the disabled and their providers who lobbied for years against the pejorative phrase “mental retardation.’’

“I was always ridiculed because I was different,’’ said Craig Smith, 52, of Brighton, who suffers from chronic memory loss. “This day changes everything. It’s about respecting people.’’

Before the House and Senate approved the name change last year, Smith and other members of the Massachusetts Advocates Standing Strong, a nonprofit group of those with cognitive and developmental disabilities, fought hard for the measure. They rallied for it at the State House, called, e-mailed, and wrote letters to legislators, and told their stories.

John Anton,43, of Haverhill, who has a mild case of Down syndrome, said the word “retarded’’ would haunt him. “When I used to go to school, there were a lot of people who made fun of me with that word,’’ he said.

“It was really an effort from the ground up, led by consumers and self-advocates who found the terminology used in this field to be offensive,’’ said Gary Blumenthal, executive director of the Waltham-based Association of Developmental Disabilities Providers.

Edmund Bielecki, of Kingston, state coordinator for Massachusetts Advocates Standing Strong, said the phrase “developmental services’’ captures the nature of the agency’s work, without labeling or denigrating the people it serves.

Only five or six states still have the words “mental retardation’’ in the names of agencies serving the developmentally disabled, said Elin M. Howe, commissioner of the department.

For Blumenthal, yesterday’s success is only a small part of the battle. “It’s great to see the name change,’’ Blumenthal said. “It’s bittersweet when you change the name and cut the services.’’

More than $45 million has been cut from the department’s budget this year, Howe said.

Jayakrishna can be reached at njayakrishna@globe.com.

© Copyright 2009 Globe Newspaper Company.

Posted on Sun, Jun. 28, 2009, philly.com

NJ bill on autism insurance closer to becoming law

BRUCE SHIPKOWSKI

The Associated Press

TRENTON, N.J. - A measure that would expand health insurance coverage for autism and other developmental disabilities in New Jersey may soon become law.


The bill requires insurers to cover the cost of autism treatments deemed medically necessary, such as physical, speech and occupational therapy, along with behavioral intervention. The Assembly overwhelmingly passed it Thursday.

That came a week after the Senate approved the measure, which would cap coverage at $36,000 annually for patients ages 21 and younger.

The bill now heads to Gov. Jon Corzine, who is expected to sign it into law soon. If that happens, New Jersey would be the 14th state with such coverage requirements.


"Families that have a loved one with autism should not be expected to shoulder the financial hardships of this disorder alone," said Vincent Prieto, D-Secaucus, who co-sponsored the bill with Assembly Speaker Joseph Roberts Jr., D-Brooklawn, and Assemblywoman Joan Voss, D-Fort Lee.


"Requiring health insurers to cover therapies for autistic children early in their lives ensures they receive the treatments they most need when it will make the greatest impact," Prieto said.

A Federal Centers for Disease Control and Prevention study found that 1 in 94 New Jersey children have the disorder, compared with 1 in 152 nationwide.


Autism is considered a genetic-based disorder. Its cause has not been pinpointed and there is no known cure. The symptoms are wide-ranging and include poor speaking and eating abilities, self-inflicted injuries and inappropriate crying or laughing, according to Autism New Jersey.


"Treating autism spectrum disorders early ensures that these children learn basic life skills, which can have lifelong impacts, often mitigating some of the challenges faced by many adults with autism," Voss said.

Some people with autism have trouble learning how to do the simplest tasks, and supporters of the measure say insurers often do not cover needed treatment, or if they do,the coverage is for a limited time. Opponents, while sympathetic, contend it will drive up health care costs for small businesses.

'We're in crisis'

Charities survey damage after United Way,with $7.5 million less to give, sets painful priorities
By Eric Frazier, Mark Price and April Bethea

efrazier@charlotteobserver.com, msprice@charlotteobserver.com, abethea@charlotteobserver.com

Posted: Wednesday, Jun. 24, 2009

With $7.5 million less to spend, Charlotte's United Way is slashing next year's grants for virtually all of the 90-plus local charities it supports.

The new spending plan, approved Tuesday by United Way board members, focuses the deepest cuts on nonprofits serving children, seniors and the disabled.

The board's reasoning: The recession and banking crisis are pushing basic needs to unprecedented levels, so limited dollars must be used to get food, clothing and shelter to victims of the economic downturn.

Charities across five counties have been dreading the news for months. Last fall, leaders watched while the recession and fallout from a United Way CEO pay scandal wrecked the agency's 2008 campaign.

Still, the size of the cuts surprised many nonprofit leaders, who must cope with them throughout the budget year beginning July 1.

Charities taking the brunt of the cuts said slashing their programs will leave important community needs unmet. They predicted fewer after-school and enrichment programs for at-risk children, and fewer services for the disabled and elderly.

The Arc of Mecklenburg County, which helps the developmentally disabled, saw its grant drop by more than $111,000, or 44 percent. Well over half of the charity's money comes from the United Way.

“We are teetering right now,” said Lauren Mullis, the executive director. “It's obviously very devastating to us.”

The Boy Scouts' outreach program suffered a $358,000 cut, or more than 60 percent. A similar program for Girl Scouts lost $178,000, or 52 percent.

Boy Scout leaders are scrambling to keep from cutting programs that bring scouting to disabled, inner-city and Latino boys. A disappointed Mark Turner, scout executive for Mecklenburg, said the cuts come despite more than 12,000 area youth participating.

“We know the United Way struggled with the decisions they had to make with limited dollars. … But I think sometimes there's a shortsightedness about what scouting does for the community,” he said.

“We just never thought we'd take a 60 percent cut.”

United Way officials said they had little choice, given up to a 40 percent jump in demand for such critical needs as food and shelter.

Bankruptcies, foreclosures and job losses have all mushroomed in recent months. Mecklenburg food stamp requests have jumped 39 percent over the past two years. Calls and referrals for homeless services shot up 85 percent this past year.

More than 200 United Way volunteers decided how to distribute almost $14 million for next year, putting a priority on critical-needs charities.

But United Way's structure made that difficult. Less than a quarter of the programs it underwrites provide emergency help. More than half deal with longer-term issues.

So to shift dollars to critical areas, volunteers had to take money from an array of well-respected programs offering enrichment for children, care for senior citizens and mental health treatment.

These cuts came despite the fact that Charlotte-Mecklenburg Schools struggles with a dropout crisis in which about 2,500 students desert each year. And the cash-strapped state is cutting so deeply into services for the disabled that the advocacy group Disability Rights North Carolina is gearing up for class-action lawsuits.

Charlotte's YWCA says it must cut 75 of 350 children involved in its Youth Learning Program, which lost $300,000. Those children, ages 5 to 12, will likely end up at home alone after school or wandering the streets, says Jane McIntyre, the YWCA's director.

“We knew they'd hit us the hardest because this would not be viewed as a critical need,” she said. “But when you see the hard numbers, the reality hits you. There's no going back. You just have to figure out how to make it work.”

United Way officials said they were not sending a message that such programs aren't important.

“We're in crisis,” said board chairman Carlos Evans. “We had to do some draconian things just to preserve what we were able to preserve.”

Even so, emergency programs received 20 percent less than they did the previous year. Lower-priority groups got 43 percent less.

In Mecklenburg, only the Salvation Army's Center of Hope shelter escaped the cuts, getting a nearly 5 percent increase, to $824,000. Still, that isn't enough to offset a 25 percent increase in demand.

Two of the Salvation Army's other programs, including the Boys & Girls Clubs, took big hits. “It's a bittersweet day,” said the agency's Maj. Todd Hawks. “Obviously, we feel good about the response to the Center of Hope. At same time, we're losing six figures from the Boys & Girls Club, where we have 2,100 kids from very low-income neighborhoods. We are going to have to close down some clubs.

“What will become of those children, I don't know.”

The Michigan Business Leadership Network and Capital Area Michigan Works plan to pitch in money for Paterni's position in case grant dollars run dry.


Paterni will help educate employers on the Americans with Disabilities Act, accommodations and tax incentives for hiring people with disabilities.


"Right now, unemployment rate is 11.5 percent for people with disabilities who are looking for employment. That has always been way too high and not addressed as needed," she said. "Especially with economic times, people with disabilities just get pushed to the back of the line."


Steve Winninger, president and CEO of Lansing-based NuUnion Credit Union, said he's hired people with disabilities and knows their value.


NuUnion employs more than 150 people in 14 mid-Michigan offices, he said.


"I understand how cultures need to change and how difficult that is," he said. "If we can do something to help people look past disability and see ability, that's a good thing."

I am a parent of a man with intellectual disabilities who has been waiting for support from the state for more than 40 years. When my son was born, had he been diagnosed immediately, he might have been sent to Fernald. When he left the school system at age 22, Fernald was supposedly closing, and there were few places in community residential settings for those whose children were cared for at home. Twenty years later, he is still waiting for residential services, along with many others.

I am one of the many parents who believe that people with all range of disabilities can live successfully in the community. If the Governor's closure plan moves forward, the money spent on keeping antiquated buildings and heating systems running can be used to help my son and others get the services and supports they need from the Department of Developmental Services (formally DMR).

Unfortunately, Dorothy Rouleau's recent Letter to the Editor slamming The Arc of Massachusetts is itself full of inaccuracies. The Arc of Massachusetts is the largest advocacy organization for people with disabilities in the state. It fights for the rights of all 180,000-plus individuals with intellectual and developmental disabilities in Massachusetts - including those who live at Fernald and other institutions - and their families.

Contrary to Ms. Rouleau's assertion, closing the institutions is the consensus among self-advocates, advocates and family members. Just look at the laundry list of groups here in Massachusetts who have taken formal positions in favor of closure - The Arc, Massachusetts Developmental Disabilities Council, Mass. Families Organizing for Change, the Disability Law Center, Mass. Advocates Standing Strong and the Association for Developmental Disability Providers.

This support is largely based on the track record of the thousands of people - including those with severe medical challenges - who have moved from institutional settings to community settings over the years. The reason we hear so little about them is because they are thriving in the community.

I, for one, am grateful to The Arc for representing me and helping to change the system so all people with intellectual disabilities will get the supports we need to provide for our adult children as we age.

The label -- "mental retardation" -- bears a stigma with negative connotations that doesn't belong in the name of a state agency serving people with developmental disabilities, local ARC leaders said.


"The people we serve don't like terms that label them," said Don Colquhoun, executive director of The Arc of Orleans County.


The Arc has a culture of using "people-first language," Colquhoun said.


The local ARC chapters and many developmentally disabled residents and their families are pushing the state to change the name of Office of Mental Retardation and Developmental Disabilities. The new name: New York State Developmental Disabilities Service Office.

In a rare show of bi-partisanship, the Ohio House of Representatives voted unanimously to remove “mental retardation” from the Department of MRDD and all 88 county boards of MRDD.

The House voted Wednesday on Senate Bill 79, which was introduced by Senator Jimmy Stewart of Athens County. In addition to all 99 members voting for its passage, about two thirds of the House members showed even stronger support by signing their name as co-sponsors of the bill.

The House version of the bill was introduced by Sen. Stewart’s replacement, Rep. Debbie Phillips and Rep. Deborah Newcomb. Because of a couple of amendments to the bill, it will go back to the Senate for final approval next week, but no additional changes are being considered.

“Every legislator understood that this bill wasn’t about money or politics. It was about the people with developmental disabilities in Ohio and their families,” said Linda Oda, Director of Communications for the Ohio Association of County Boards of MRDD, which also is expected to be making a name change in the near future.

The “Name Change Bill” — as SB79 was commonly known — came about almost two years ago when people with developmental disabilities in Athens County visited their Board of MRDD and asked for the change. After about a year of discussion, the self-advocates were back at the board meeting. This time, the board acted immediately and then-Representative Stewart was asked to introduce legislation to take “mental retardation” out statewide.

“Jimmy Stewart didn’t survey people to see what they thought - he just saw how important it was to the people we serve, and made a phone call from our meeting to start the wheels turning to make this legislation possible,” said Jody Harris, superintendent of the Athens County Board of Developmental Disabilities.

Athens County didn’t wait for the bill to pass. They immediately began doing business as a Board of DD. There are nine other County Boards of MRDD “doing business as” County Boards of DD. Delaware County was the first county to drop “mental retardation” from its name. They did so in 1991.

Many other County Boards of MRDD also wanted to drop “mental retardation,” but were prohibited by their prosecutors, who interpreted the Ohio Revised Code in such a way that would not allow County Boards of MRDD to do business under any name other than the state-sanctioned title.

Oda said the name change is part of the continuing evolution for people with developmental disabilities. “As recently as 40 years ago, it was considered necessary to house our individuals in institutions, leaving many of them naked because it was easier to keep them clean, or putting people with autistic tendencies in cages to keep them from hurting themselves or others,” she said.

“In 1967, our parents said ‘enough’ and County Boards of MRDD were created to provide the services necessary. But even then, it was politically correct for learned people to refer to people with developmental disabilities as imbeciles or idiots,” she said.

Oda said much of the credit for the passage of the bill should be givens not only to the self-advocates of Athens County, but also advocates for the developmentally disabled from throughout Ohio. Many were in attendance as legislators voted on the bill.

For Governor Ted Strickland, it will be his first bill signed into law from the 128th Ohio General Assembly that wasn’t required by the Constitution. The Transportation Budget bill previously was signed this spring.

For those of us in California who have not lost our jobs, the state budget crisis might be an abstraction. For adults with developmental disabilities, the consequences are severe, concrete and immediate. Take my son Rob, for example.


Rob, 30, was born with cerebral palsy, intellectual disabilities and optic nerve atrophy that left him legally blind. He is one of more than 20,000 people in the Bay Area who have a developmental disability - which includes Down syndrome, cerebral palsy, autism and other cognitive and intellectual disabilities.


There was a time when Rob would have been sent off to a costly, state-run institution - deprived of the ability to live in his community. As a society, we wisely realized that closing such institutions would enable people with developmental disabilities to live healthier and more fulfilling lives.


Today Rob is able to live independently in an apartment, with the help of a support professional from the Arc of San Francisco, a nonprofit that assists adults with developmental disabilities. The Arc has helped Rob find a job, learn to shop and keep his apartment clean, and stay on top of his medical appointments.


Funding for these services was instituted by the Lanterman Act of 1969, which established that people with developmental disabilities have a right to services that enable them to lead independent, productive and satisfying lives.


As large institutions have closed, community-based nonprofit organizations like the Arc have grown to meet the increasing demand for critical services that support people like Rob.


Care in the community isn't just more humane than institutional care, it also saves money - as much as $227, 272 per person per year. Based on figures sited in a recent report by the Association of Regional Center Agencies, institutional care costs an average of $287,340 annually per person, compared with an average cost of $60,080 to serve individuals who have left the institutions since 1992.


Unfortunately state budget cuts under discussion in the Legislature threaten to curtail or eliminate funding for these services.


I am worried that Rob may soon be living without crucial home-care visits or that he will be forced to leave his apartment entirely. He might also lose his part-time job because the Arc won't be able to employ the job coaches who assist him.


It gets worse. Despite his cerebral palsy and vision impairment, Rob won't be able to get an eye exam, eyeglasses, a walker or a cane; visit a dentist; or see an orthopedist. That's because the state is cutting Medi-Cal, too.


And Rob is one of the lucky ones. He has a family who will care for him and make sure that he is safe, as long as we're alive. Out of the 550 clients the Arc serves each day, more than 200 of them have no family or support system outside the staff members who assist them each day.


Funding for the safety net that enables them to live in the community has been weakened through years of rate freezes and cuts. Now the state is considering truly catastrophic cuts that may force many service providers to close their doors.


The people who help Rob today with simple life tasks like cooking and getting to doctors' appointments are at risk of being unemployed. If they disappear, there is nowhere else to turn. Large institutions have closed. Group homes are either closed or full.


People with developmental disabilities without family support will have no one to take them to a doctor if they get sick and no one to make sure their rent is paid on time. Instead, they'll end up on the street, and show up in hospital emergency rooms for health problems that could have been prevented. The social and financial costs will be enormous.


These are our children, our neighbors and our co-workers. They deserve better.


The consequences of breaking this social compact should weigh heavily upon our collective conscience. Our legislators should feel shame. We, as voters, should feel outrage.


People's lives depend on the outcome of these decisions. We need our leaders to take serious, nonpartisan action to keep state budget cuts as far as possible from our most vulnerable citizens.

Laura Repke is the director of development and community relations for the Arc of San Francisco.

Health bill highlighted as vehicle for long-term care
Kennedy is absent from briefing
By Lisa Wangsness
Globe Staff / June 9, 2009

WASHINGTON - It was the room where both John and Robert Kennedy announced they planned to run for president. The room where the Senate held hearings on Watergate and the Titanic disaster.


The Caucus Room of the Russell Senate Office Building, with its carved marble walls and heavy chandeliers, is where historic things happen, an aide to Senator Edward M. Kennedy explained to some 250 people. That, she said, is why his health committee decided to host a briefing there yesterday on how its health-reform bill could transform life for people with disabilities and create a new national long-term care insurance plan.

But the 77-year-old Kennedy, who is battling brain cancer, did not attend the briefing. He wasn't on Capitol Hill last week, either, when Democrats on his committee began preparing to unveil their draft healthcare legislation. Senator Chris Dodd, a Connecticut Democrat and Kennedy's top deputy, has been filling in.

Kennedy spokesman Anthony Coley said Kennedy has been working on the healthcare bill while receiving his cancer treatments, but he did not expect him back in Washington this week.

"As Senator Kennedy has said many times, guaranteeing that all Americans have access to affordable and quality healthcare is the cause of his life," Coley said in an e-mail, noting that Kennedy had "a very productive meeting" over the weekend with Dodd.

"He's been a leader on this issue for 40 years, and he continues to lead," Coley wrote. "That doesn't depend on location."

Last week, Dodd had choked up when he was asked how Kennedy was doing.

"I'm getting indications every day that the senator will get back here as quickly as he can," Dodd said last Wednesday. "He's fighting hard. . . . He's doing OK. Look, this is tough."

Senator Orrin Hatch, a Utah Republican who has sometimes worked closely with Kennedy over the years but has expressed disappointment about the extent of government spending and regulation in Kennedy's draft healthcare bill, said yesterday he has not spoken directly with Kennedy about his concerns.

"If he wants to chat with me, I'll chat with him anytime, but I want to see him get through this as much as he can," he said.

Still, committee Democrats yesterday highlighted two more potential components of the healthcare bill.

Senator Tom Harkin said he is going to push to wrap into the healthcare package a bill known as the Community Choice Act, which would let people who qualify for long-term care services - either medical or personal assistance - decide whether to receive them at home or in an institutional setting.

Harkin said the legislation would cost billions, but in a healthcare bill that will cost $1 trillion to $1.5 trillion over a decade, "I'm here to tell you that $2 billion, $3 billion, $4 billion is not much to ask."

The committee hopes to include a new national long-term insurance program that would provide basic help for people as they age or if they become disabled. Under current law, people who want long-term home or community-based care find it difficult to get into the popular Medicaid "waiver" programs offering home health services. Many elders who need assistance wind up spending their savings in order to be poor enough to qualify for Medicaid, so they can enter a nursing home, when they might just need regular help around the house and regular home nurse visits.

All working Americans would automatically be enrolled in the plan unless they choose to opt out. Students and poor people would pay only $5 a month, others would pay not more than an average of $65 a month. After being enrolled for five years,