Boycott "Pennhurst Asylum"

E-newsletter Issue Date: Monday, October 11, 2010

The opening of “Pennhurst Asylum," a commercial horror house attraction on the site of the Pennhurst State School and Hospital in East Vincent Township is anything but the amusement its developers hope it to be.  Pennhurst, which closed in 1987, is one of the nation’s most notorious institutions where residents with disabilities suffered neglect, abuse, beatings and sexual assaults.

In a joint effort of advocacy, action and communication, The Arc partnered with The Arc of Pennsylvania and The Arc of Chester County to call for a boycott of the site.

Pennhurst, located in the suburbs of Philadelphia, has now become the location that two developers are using to stage the “Pennhurst Asylum.”  It’s been reported that the attraction is using some artifacts the developers found on the property and will feature an autopsy room and electro-shock therapy scene.

“We urge people of good conscience to join us in standing against the opening of this truly horrifying project.  This is an offensive and disgraceful business venture and an assault on the memory of those who resided at Pennhurst – it diminishes the pain of real people who endured unspeakable abuse within its walls.  We’re making a plea for people and their families to stay away and send a message to the developers that this is wrong,” said Peter V. Berns, CEO of The Arc. 

The Arc has deep roots in advocating for the closing of institutions across the nation and The Arc of Pennsylvania was a key plaintiff in the litigation that resulted in Pennhurst’s closure to stop overcrowding and abuse in 1987.

Advocates are also urging families in Pennsylvania and in surrounding states to boycott The Bates Motel/Haunted Hayride in Glen Mill, PA which is owned and operated by Randy Bates, co-developer of “Pennhurst Asylum.”

Self-Advocates Shine at Convention

E-newsletter Issue Date:  Thursday, August 19, 2010

Look for self-advocates to stand up AND stand out at Convention as many powerful self-advocate leaders share their experiences being in charge of their own lives, speaking up on their own behalf and achieving their personal goals.

Jill Egle, a self-advocate and Co-Executive Director of The Arc of Northern Virginia is presenting a workshop to help self-advocates hone their public speaking skills.  “This is my forth year attending Convention and just like in previous years, people will take the energy back to their communities to create opportunities for change,” Egle said.

Another self-advocate presenting at Convention is Yayo Robles from Advocacy in Action, LLC.  His presentation, “Living the Dream” explores the dramatic circumstances of his life and his successful pursuit of his creative dream.

At the age of 9, Robles was hit by a car and pronounced dead at the hospital. He was revived but remained in a coma for eight months. After years of therapy and special education, he is now successfully realizing his dream of having a film making and acting career.

In a presentation titled “Don’t Give Up!” self-advocate Jamie Lazaroff describes what he calls “one-person’s journey through life that happens to have an intellectual disability.  It is a story, where I was, where I am now and where I would like to be.  I live by a mantra of don’t give up, don’t ever give up.” Lazaroff said.

Frank Meeuwis’ experience stems from his personal journey and continues with his own work empowering others through assuring quality services for people with disabilities at The Arc of Tennessee.

Convention will also offer workshops for self-advocates including a special presentation on “Therapy Pets” and how they have proven to have therapeutic value in calming people with autism.  In addition, “Living Safe in Your Community” will inform self-advocates and others on fire safety, avoiding being the victim of a crime and other information.  This panel is comprised of fire and police officials in Florida and will empower everyone as they live fully in the community. 

Cristy Marchand Receives AAIDD ‘Presidential Award’

E-newsletter Issue Date:  Tuesday, June 22, 2010

The Arc of Maryland’s Executive Director Cristy Marchand was honored with the prestigious American Association on Intellectual and Developmental Disabilities (AAIDD) ‘Presidential Award’ for her dynamic leadership in advocating for people with I/DD and their families.  She received the award at AAIDD’s annual convention in Providence, RI in mid-June.

The Presidential Award was presented by AAIDD President Joanna Pierson; the plaque reads:  “In sincere appreciation for your outstanding systems advocacy and leadership in partnership with people with developmental disabilities and their families.”

The Arc congratulates Cristy on this honor – it is the work of advocates like her that powers the movement forward to a future of opportunity for people with I/DD and their families.

“Cristy is one of The Arc’s most effective leaders and advocates.  She is ceaseless in fighting the good fight in the struggle to ensure that people with disabilities get their fair share of funds in the state of Maryland; her contributions to the national Arc are immeasurable,” said Peter Berns, CEO of The Arc.  Marchand has been a part of The Arc since 1989.

Her impact on legislation in the Maryland General Assembly is evidenced by Maryland’s outpacing other states across the country in ensuring that critical funding is in place.  “Unlike many other states across the country, Maryland is keeping its promise to our most vulnerable citizens by refusing to cut back on our health care coverage,” Marchand said.

AAIDD promotes progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities.

The Wait List Crisis in America

E-newsletter Issue Date:  Wednesday, April 28, 2010

More than 600,000 people with intellectual and developmental disabilities (I/DD) are on lists waiting to receive the public supports and services they need. Too many wait 8 to 10 years for vocational training, supported living, transportation, or other services that are needed today.

The Arc is determined to bring an end to these wait lists and make living in the community, with the appropriate supports or training, an option available to people impacted by I/DD.

If you would like to help The Arc and our work to end waiting lists and address other issues facing people with disabilities click here.

Self-Advocate & Arc Member Wins Right to Live on Campus

E-newsletter Issue Date:  Friday, February 26, 2010

Micah Fialka-Feldman, 24 refused to take no for an answer and sued the university – and won.  A U.S. District Court judge in Michigan ruled that Fialka-Feldman had been discriminated against by Oakland University when his request to live on campus was denied.  Fialka-Feldman and his parents, Janice and Richard are members of The Arc of Oakland County and active in The Arc of Michigan.  Fialka-Feldman attends classes as part of a program for students like him with intellectual disabilities; the school maintained that because he was in a special program and not a full-time student he couldn’t live in a dorm.

With the passage of Individuals with Disabilities Education Act (IDEA), dreams for attending public schools and even college became possible for many.  Paul Marchand, Staff Director of the Disability Policy Collaboration of The Arc and UCP told National Public Radio (NPR) of parents having higher expectations.  “Parents want the best for their kids.  They want their kids to get a job; they want their kids to be as independent as possible.  They want society to accept them.  They want their kids to be as typical as all the other kids of their age, including going to a college.”

In an interview with NPR, Fialka-Feldman said living on campus “means I would have the full college life and …I could go to Friday night things in the dorm, like Friday night activities like a film night or like a basketball game and going out with friends.”

Fialka-Feldman’s parents, Janice Fialka and Richard Feldman introduced their documentary “Through the Same Door:  Inclusion Includes College” to The Arc in 2007.  This widely acclaimed film shows their son’s experiences as part of a growing trend across the country of providing postsecondary education for students with cognitive disabilities.

Three years later in reflecting on his son’s triumph in court, Richard Feldman told NPR, “The judge’s decision is a wonderful victory for Micah’s dream to live in the dorm and a victory for so many other students and folks with cognitive disabilities.  Now it’s their right to be fully included in the college dormitory experience.”

It is increasingly more common for students with intellectual disabilities to attend schools in their neighborhoods and be mainstreamed with all the other students.  Often after high school graduation they want to attend college and more universities and colleges are providing special programs for them to enroll.