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Student with disability wins dorm suit

December 30th, 2009

By Joseph Shapiro, NPR

Here’s one reason Micah Fialka-Feldman wants to live on his college campus, instead of remaining at home with his parents: To get to college in the morning, he takes the public bus near his home, then transfers to a second bus. The trip takes about two hours.

Fialka-Feldman, 24, attends classes at Oakland University, as part of a program for students like him, with intellectual disabilities. The campus is about 20 miles from where he lives with his parents in Huntington Woods, Mich.

A few years ago, Fialka-Feldman helped his younger sister Emma move into her dorm room when she went off to college at Mount Holyoke. It gave him another reason to want to live on campus: He thought he was missing out on an important part of college life. But his school said because he was in a special program and not a full-time student, he couldn’t live on campus.

So Micah sued.

Early yesterday morning, his cell phone rang. It was his lawyer with the news: He had won. “I’m happy and I’m proud,” say Fialka-Feldman.

A U.S. District Court judge in Michigan ruled that Oakland University had discriminated against Fialka-Feldman. The new school term starts Tuesday. And Fialka-Feldman says he hopes to move into his new dorm room by Sunday. He’s got his computer, his radio and his bedding ready. He’s got the posters he wants to put on the wall, including ones with quotes from civil rights leaders. One says: “A community that excludes one member is not a community at all.”

To live on campus, he says, “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.”

His father, Rich Feldman, adds: “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.”

A spokesman for the university said officials there have not had time to evaluate the decision. The school can appeal.

It’s pretty common these days for kids with intellectual disabilities like Down syndrome to go to their neighborhood schools and to be mainstreamed with all the other kids. And when these disabled students finish high school, they often want to go to college. In recent years, scores of community colleges and universities have opened special programs and invited students with intellectual disabilities to enroll. Oakland University has been a pioneer in opening up to these students. But the colleges can’t always keep up with the rising expectations of disabled students and their parents.

Fialka-Feldman takes regular classes, and students act as tutors to help him follow along in class and keep up with his homework.

He has taken classes at Oakland since 2003 and the new term will be his last on campus. “I’m taking a class on public speaking. And a class on persuasion,” he says.

He’s already been pretty good at persuasion. In the course of fighting this case, he has spoken twice to the school’s board of trustees, and he pressed his case in court. The university’s study government voted to support Fialka-Feldman’s right to live on campus, and the student body president, Kristin Dayag, was at his side at his court hearing earlier this month.

“Micah has really found his voice,” says his mother, Janice Fialka. She remembers when Micah was 2 or 3, and still didn’t speak. “I remember vividly asking the speech therapist, do you think that Micah will ever talk. And she hesitated. And that hesitation, which was probably only four seconds, felt like a lifetime,” says Fialka, a social worker who now is a speaker on disability issues. “And basically she was saying, ‘We don’t know.’ And now he’s speaking in front of all kinds of people. So this is quite a journey of surprise, and the importance of believing that every person has a gift and should be supported in their dreams.”

A generation ago, parents couldn’t dream for their kids with disabilities. Before the 1975 special education law, public schools weren’t even required to teach them — and about 1 million then didn’t get any education at all.

Even today, lots of these kids aren’t capable of going to college — and for many of them the future remains bleak.

But Paul Marchand, with the advocacy group The Arc, says parents now have 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.”

Last year, Congress passed legislation that for the first time makes it possible for people with intellectual disabilities to get federal college loans — even if they’re not in a full-time program.

Listen to the story here.

Judge backs lawsuit by disabled people for independent living

December 29th, 2009

By Lynn Bonner, Charlotte Observer

A federal judge Monday prohibited the state and a local mental health management office from cutting services to two Wilson-area people with mental illness and developmental disabilities until they get a full hearing on their lawsuit seeking to continue independent living.

U.S. District Judge Terrence . Boyle said it’s likely that two residents identified in the lawsuit as Marlo M., 39, and Durwood W., 49, would suffer irreparable harm if a local mental health office went through with a money-saving plan to move them from their apartments.

Their lawyers contend the two would end up in institutions, though a lawyer for the local mental health office disagreed with that conclusion.

State programs and funding should conform to the Americans with Disabilities Act, Boyle said. The federal law requires that public entities provide their services in “the most integrated setting appropriate” to the needs of people with disabilities.

Relatives of the two residents said they were relieved that any moves are on hold.

“Durwood really needs his independence,” said Willie Williams, his uncle and guardian. “I was surprised that they would even consider cutting his funding.”

Forcing the two to move from their apartments to institutions because of budget cuts is contrary to a U.S. Supreme Court decision that gives disabled people the right to live in the least restrictive settings possible, said John Rittelmeyer, director of legal services for the advocacy group Disabilities Rights North Carolina.

Other local mental health offices may view any eventual decision against the residents as a “green light” to make their own cuts to residential arrangements for 1,200 similarly disabled people in the state, he said.

To live in single apartments, the two rely on round-the-clock care paid for by state and federal money. The Beacon Center, the mental health agency for Wilson, Edgecombe, Greene and Nash counties, planned to stop providing the state money. Such a cut, amounting to about half of the cost of their care, would probably force them to move to institutions after years of living in apartments, Rittelmeyer said.

The Beacon Center’s lawyer, Christopher Brewer, said the funding cut did not mean insititutionalization. Marlo lived in a group home for six weeks and did fine, he said.

Kim Peek, the inspiration for Rain Man, passes at age 58

December 23rd, 2009

By Ed Pilkington, Guardian.co.uk

Kim Peek, the real Rain Man whose almost unimaginable powers of memory were coupled with severe disabilities and who inspired the Oscar-winning film role played by Dustin Hoffman, has died of a heart attack in his home town of Salt Lake City, aged 58.

Peek has been called a “mega-savant” for his ability to memorize to the word up to 12,000 books, including the Bible and the Book of Mormon. He could read two pages in about 10 seconds – the right page with his right eye and the left simultaneously with his left eye.

He knew phone books by heart, and could tell you what day of the week a particular date fell upon going back decades. One of his party tricks was to tell strangers the names of the people who used to live next door to them years ago.

At the same time, though, he had deep disabilities and relied on his father Fran for help dressing, brushing his hair and other simple motor skills.

News of his death led to an outpouring of expressions of gratitude from thousands of parents of disabled children who said that the film, and Peek’s many public appearances that followed it, had given them comfort and hope. “Kim taught us something about human potential beyond what most of us can even imagine let alone explain,” said one commentator on his local paper, Deseret News.

“His legacy can be summed up in one word: inspiration,” said Darold Treffert, a psychiatrist at the University of Wisconsin medical school who advised the makers of Rain Man and who was close to Peek for the past 20 years.

Peek was born on 11 November 1951 with damage to the cerebellum in which the corpus callosum, a bundle of nerves that connects the two sides of the brain, is largely missing.

At the age of two his severe disabilities almost landed him for life in an asylum.

In those days his condition was known as “idiot savant” and considered best treated in mental institutions. He was seen by a neurologist who famously could spare only five minutes as he was on his way to a golf course, and who concluded that the infant Kim would never be able to speak or learn and should be taken out of society.

Fran Peek, however, refused to accept that advice — after all by the age of two Kim could already read and memorize books. For the following 56 years, Fran acted as his son’s primary carer, guide and loyal friend. “My dad and I share the same shadow,” Kim once said.

Together, father and son toured the world, taking their story of the potential to overcome even seemingly intractable disabilities to more than 2 million people.

“You don’t have to be handicapped to be different. Everybody is different,” Kim would tell his audiences.

The Peeks lived in relative obscurity until 1984 when they attended a conference in Texas held by a group with the decidedly unreconstructed name Association for Retarded Citizens. There they met Barry Morrow, a Hollywood screenwriter who was looking for stories that had film potential.

“I was absolutely flabbergasted,” Morrow has said of that meeting. “I could not get this man out of my mind.”

When Hoffman was cast in the title role of the film Rain Man that Morrow wrote, based in spirit if not in detail on the life of Kim Peek, he spent time with Peek, imbibing his mannerisms and quirks. Film folklore has it that when Hoffman parted company with Peek, he said: “I may be the star, but you are the heavens.”

Rain Man went on to take four Oscars, including best actor for Hoffman.

The film propelled Peek himself into a global phenomenon, though it never seemed to change him. He once wryly said: “I wasn’t supposed to make it past 14 and here I am at 54, a celebrity.”

Audiences clamored to hear him answer questions off the top of his head, such as who was the game winning pitcher of game three of the 1926 World Series (Grover Cleveland Alexander of the Cardinals). They were stunned by his ability to rattle off facts in about 15 different subjects, including history, literature, sport and the British monarchy.

Brain scientists were equally eager to study him in the search for clues as to his extraordinary powers. In 2004 Nasa scientists scanned his brain to look at what happened when Peek expressed and thought of things.

Neurologist Elliott Sherr was part of a team at the University of California that was working with Peek at the time of his death, trying to understand the impact of the damage to his cerebellum. “His gift to the world was that he was a source of hope to others wherever he went,” Sherr said.

Peek was initially diagnosed as having autism, but in recent years that view has been overturned.

Scientists remained intrigued by signs that over the years he seemed to acquire greater cognitive skills to interpret facts – something assumed to be lacking in savants.

He had begun to play the piano, and had developed something of a sense of humor. Before Rain Man he had shunned company and was incapable of looking people in the eye, but the film seemed to boost his confidence and social skills.

“He moved from holding this gigantic database of fact in his head to being able to join facts together,” Treffert said. “He became a living Google.”

Mulit-talented

During the performance of a Shakespeare play, Kim Peek suddenly stood up and shouted out “Stop!” When an actor asked him what was wrong, he said: “You’ve missed out a word from that line.” The actor apologised and said he did not think anyone would mind. “Shakespeare would,” Peek replied. Peek showed an ability to read and memorise books before he reached the age of two. He would turn a book upside down when it was finished, a habit he retained to his death. His areas of expertise included American history, geography, baseball, basketball and football, films, calendars and dates, and Shakespeare. Name a city, and he could list roads, businesses, zip codes and historical data from the area. But he had difficulty buttoning up his shirts and didn’t master walking up stairs until he was 16. He would also get agitated at times, or have “pop-offs”, as his father Fran called them.

Op-ed: No way to refer to the vulnerable

December 21st, 2009

By Randolph Siegel

Imagine a prominent magazine, winner of a National Magazine Award for “general excellence,” publishing a column that makes fun of developmentally delayed children. Or an Emmy Award-winning comedy show in which a leading character has sex with a mentally disabled woman and then mocks her disability. Or a popular Web site, with 3 million monthly visitors, that has more than 600 cruel references to “retard” on its site. No need to use your imagination, because these are just three examples of how the media elite too often ridicule the millions of Americans who are cognitively impaired due to debilitating brain disease or injury.

As a member of the media who has a developmentally disabled child, I cringe when I see snark like this from New York magazine savaging an interview with the actor Alec Baldwin in Parade magazine: “The whole thing reads like it was As Told To a slow third-grader with vocabulary issues. … This thing sounds like the dumb-Charly (sic) parts of ‘Flowers for Algernon.’ ”

Or this season’s episode of HBO’s “Curb Your Enthusiasm” in which Larry David’s sidekick, Jeff, seduces a mentally disabled character and then belittles his victim after she speaks out.

Or headlines on the popular Gawker site such as “Retard Homo Newspapers Scared of Awesome Commenters!” or “Retard Nude Harvard Porn Kid: Worth Your Vomit?” surrounded by ads from some of America’s largest advertisers.

Call me overly sensitive. Accuse me of being humorless. Say whatever you want. But if the true measure of a society is how it treats its most vulnerable citizens, then these mean-spirited attacks are not only indefensible, they reinforce the intolerance and discrimination that these children and adults often face in their schools, communities or workplaces. I had never met a “retard” until my daughter was labeled one after untreatable epilepsy ravaged her cognitive development. It’s been a painful, frustrating journey for us. Millions of other American families have experienced similar shattered dreams, with a neurologically damaged child, parent or friend — or someone they love who has returned home from Iraq or Afghanistan with a traumatic brain injury. Over the years, I’ve bit my tongue whenever I hear “retard jokes” at business functions — or see a movie like DreamWorks’ “Tropic Thunder” in which “retards” are vulgarly disparaged in a lame effort to generate laughs — or hear a song like the Black Eyed Peas hit single “Let’s Get Retarded.” Even when President Barack Obama described his subpar bowling skills by making an insensitive joke about the Special Olympics on “The Tonight Show with Jay Leno”, I tried to internalize the pain. But that’s a losing strategy and no longer justifiable.

As Americans with intellectual disabilities are increasingly stigmatized and dehumanized in our media and popular culture, it’s time — now more than ever — for their families and friends to help them fight back.

Randy Siegel is president of Parade Publications.

NY Legislature Protects People with Disabilities from Severe Budget Cuts

December 16th, 2009

New York State provides a supplemental cash allowance to the federal SSI benefit for qualified individuals – those people with little or no income who are age 65 or older, as well as individuals of any age who are blind or disabled. The Executive’s DRP would have slashed the state’s contribution to SSI by $14 a month for an individual living alone and $9 per month for an individual living with others. The SSI rate in New York, combining both the federal SSI benefit and the state supplement, is $761 per month for a person living alone.

The Assembly also substantially reduced the Governor’s proposal to cut reimbursements for home care, another program that people with disabilities heavily rely on in order to live independently in their own homes and in their own communities.

“The Assembly was able to hold the line on cuts that would have devastated people with disabilities,” Assembly Member Bing said. “In particular, I am extremely proud that we did not allow the state supplement of SSI to be reduced.”

Bing noted that because of the extremely high unemployment rate of people with disabilities, many disabled individuals from across the state rely on their SSI payments as their only source of income. Therefore, cutting SSI by even just a few dollars a month could put a severe financial strain on the state’s most vulnerable citizens.

“I completely understand the unenviable position that the Governor is in because of the very tough economic climate that we are dealing with,” Bing said. “I am thankful for all of the disability advocates who have come out in force to speak out against the proposed cuts, and will look forward to their input on the 2010-2011 Executive Budget when it is released.”

Read more…

Advocacy group files lawsuit to protect people’s right to live in the community

December 15th, 2009

On Friday, December 11, 2009, Disability Rights North Carolina (DRNC) filed suit in federal district court on behalf of two clients, Marlo M. and Durwood W., naming the Secretary of the North Carolina Department of Health and Human Services and the Director of the Beacon Center as defendants.  The plaintiffs in the lawsuit are two individuals with disabilities who were notified that a large measure of the state-funded services that permit them to live in the community are being terminated.

“The loss of these services will likely result in their relocation to an institution, thus violating the mandate of the  landmark Supreme Court decision Olmstead v. L.C., which held that unnecessary institutionalization of individuals with disabilities is a form of discrimination under the Americans with Disabilities Act,” said Vicki Smith, Executive Director of DRNC.

For almost a decade, Durwood W. has lived in his own apartment as the recipient of federal and state dollars called Thomas S. funds, named after a class action lawsuit that successfully challenged scarcity of services available to individuals who were challenged by both intellectual disabilities and mental illness.  Marlo M. has also lived in her own apartment for more than five years supported with a blending of federal and state dollars.  Although the North Carolina General Assembly exempted individuals like Durwood and Marlo from the most severe budget cuts, the legislature did not make the preservation of these necessary services mandatory.  Instead they delegated discretion to Local Management Entities such as the Beacon Center to preserve the services provided to this vulnerable population.

“These two individuals are caught in the tangle of a service delivery system that does not have clear lines of accountability between LMEs and the State,” stated Smith.

Read more…

Texting gives an autistic boy a voice

December 11th, 2009

By Ann Work, TimesRecordNews.com

A mom knows a miracle when she sees one.

Especially when it concerns her son.

Two months ago, Vera Word penetrated the autistic world of her 15-year-old son, Jonathon, using — of all things — a cell phone.

The device’s text messaging capabilities have opened up a new method of communication with her son that is working better than anything she’s tried before.

“It was genius,” agreed Jenna Daily, Jonathon’s teacher in Harrell Accelerated Learning Center’s autistic program. “We’ve all been super-excited. The cell phone has really opened up the possibilities.”

Word and Daily have tried many communication strategies with Jonathon, with Word’s efforts dating back to the first time she began noticing some problems in Jonathon’s perceptiveness when he was two years old.

Back then, the toddler wasn’t talking. He wasn’t running. When she dropped him off at a nursery and then returned to pick him up, even if she was talking or calling his name, he wouldn’t realize she had returned until he visually caught sight of her.

The disconnect is a common sign of autism.

Over the years, Jonathon never learned to talk.

Vera used many of the communication techniques parents use with hearing-impaired children. For years, she carried a keychain of pictures with photos of stairs or a bathroom or food; Jonathon could point to the picture that represented his need.

She also kept an alphabet of letters on the refrigerator when Jonathon was 7 years old, which he used to spell out words.

A smart little guy, Jonathon knew the meanings of words. But could he read? She was never completely sure, since he couldn’t speak and read aloud to her.

The family started him on a touch-screen computer provided by the Helen Farabee Center about a decade ago. He learned how to navigate that computer and then, eventually, to use a mouse.

In recent years in Harrell’s Accelerated Learning Center autism program, he operated the class computer and also learned to use a Franklin, a handheld children’s computer that allowed him to spell out his requests.

But it was cumbersome, and childish, and if Jonathon made a typo or misspelled a word, it required him to start over.

Vera was dissatisfied. The day-to-day communication with her intelligent but autistic son was still stiff and sketchy. She was always guessing at what he was saying, taking the clues he gave her and filling in his blanks. Even if showing pictures worked, she feared that not everyone in his life — such as a future employer — would be willing to accommodate a pictures-only communication style. There must be a better way, she thought. But what?

Then Vera bought herself a new cell phone. As she was learning to use it, she came up with an idea: Why not teach Jonathon to text-message? All he would need would be a cell phone that was appropriately programmed. It didn’t need to be connected to a phone line. She envisioned him texting her a message on its small screen, then showing it to her to convey his thoughts.

She had already turned in her old phone to Verizon, so she called the company to retrieve it. When that wasn’t possible and the Cellular Self sales rep learned what she wanted it for, they donated a phone to Jonathan. His sapphire blue phone, with its large screen and slide-down QWERTY keyboard, is a Verizon Blitz.

Vera taught him how to move through the series of screens that would give him a blank screen where he could type in a message.

One Sunday night two months ago, Jonathon was playing games on his computer. After awhile, he came over to his mother, cell phone in hand. He held it out so she could read it. On the screen was typed this message: “Big Pac Man ate Blue Ghost.” Vera glanced over at the computer screen and knew immediately what he was trying to tell her.

“It was the first time he told me anything that I didn’t have to fill in the blanks!” she said. It was a Eureka moment. She was so excited that — even though it was a weekend evening — she called Jenna Daily, his teacher in Harrell’s autism program. She knew Daily would appreciate the triumph.

Daily did. She even wondered why she didn’t think of it.

What Daily likes about it is its age-appropriateness, she said. It’s exactly what any other teen-age boy would have, making Jonathon fit in more closely with his peers, rather than stand out. “It says, ‘I may sound different, but I am just like you. I can communicate, I’m intelligent, I have opinions, and I am a teen-age boy.”

Plus, it’s portable. As part of Harrell’s program for Jonathon, Daily aims all her instruction at increasing his communication skills so he can move comfortably among others in stores and restaurants, even when his parents aren’t around to translate what he needs.

The cell phone’s text message is now his voice, one that everyone can understand. “There’s always been text-to-speech software, but it hasn’t been portable and effective for us,” she said. But technology is always improving, and Daily wonders now if there might be such software available on an iTouch or another cell phone.

“It’s a never-ending experiment,” Daily said.

The cell phone is such a friendly tool that she has great hopes for it. She’s passed on this discovery to the Wichita Falls Independent School District’s speech teachers, who have rejoiced over its success and brainstormed how they may use it with other children.

“We want (students like Jonathon) known for who they are and not their disability — this is Jonathon Word, who also happens to have autism,” Daily said. “That’s what we want.”

Jonathon’s mother just wants her son communicating effectively, not only with her, but with others. “We want him to be able to communicate for himself,” she said.

Recently, Jonathon has been texting full sentences to Daily during class time. He’ll text, “May I play the Wii?” or “Cake, please.”

That excites Daily so much that she longs to grant his every desire. “When I get the full sentence, it’s like, ‘Wow. (Cake? Sure.) Let’s give you the biggest piece!’”

Stevie Wonder the U.N.’s newest Messenger of Peace

December 9th, 2009

The U.N. said the singer-songwriter, who has won 25 Grammy awards, is being recognized for his philanthropic work with the U.S. President’s Committee on Employment of People with Disabilities, the Children’s Diabetes Foundation and Junior Blind of America.

Wonder will be the 11th U.N. Messenger of Peace, joining a list of notable figures — including Nobel Peace Prize winner Elie Wiesel, actor Michael Douglas, primate expert Jane Goodall and conductor Daniel Barenboim— who use their prominent positions to promote the U.N. and help the less fortunate.

“Our newest Messenger of Peace is someone who is admired by millions of people and has given back to millions of people,” Ban said in a statement ahead of Wonder’s official designation at a U.N. news conference on Thursday.

Read more…

Close down the last institutions in Canada

December 8th, 2009

By Laura Stone, Canwest News Service

OTTAWA — The three remaining large-scale institutions for Canadians with intellectual disabilities should be shut down, says an association that helps mentally challenged people in Canada.

The Canadian Association for Community Living said Thursday it wants institutions housing some 900 people in Alberta, Manitoba and Saskatchewan to be closed down. In their place, the association asked for community-based options, such as public housing and more government-funded care workers to assist those with intellectual disabilities to live on their own.

“Living in an institution is not living,” said Bendina Miller, president of association, which is based in Toronto but has 420 branches across the country.

“We would urge the government of Canada to work with those three provinces to, in fact, have those institutions closed.”

Anna MacQuarrie, director of policy and programs for the association, said it costs an average of $100,000 per person per year to house someone in an institution.

“It’s really expensive to keep people in institutions,” said MacQuarrie. “If we can find supportive community options, it’s actually way cheaper for everyone involved.” She said an institution might house 250 people but have 500 staff, who could be helping people live in their own homes.

In 1986, there were 31 institutions across Canada. While the association said it was pleased many institutions have been shut, it said many provinces still house people with intellectual disabilities in group-type facilities, such as nursing homes, seniors homes, and long-term care facilities, rather than let them choose their own housing.

Caroline Matte lived in an Ottawa group residence for three years. “I had a tiny room (with) a metal bed in the basement, along with another 30 people in the building,” said Matte, who has difficulty remembering and executing multiple tasks.

“It did not cure my loneliness and only increased my disconnection from the community. My life was about eating and sleeping.”

Matte, 43, now lives with a roommate in a subsidized apartment with affordable rent geared to her disability cheque. She is visited a few times a week by a support worker and frequently travels the city on her own. While Matte cannot find a job and is on a strict budget, she has resumed her painting hobby and says she is happier and has more independence than when she lived in the home.

The plea for the closure of institutions follows the association’s release of its third annual report card on the inclusion of Canadians with disabilities.

The report found that while some progress has been made toward improving the quality of life for those 750,000 people with intellectual disabilities, including Down syndrome, some forms of autism, and those who struggle with processing and understanding information, not enough has been done to help them live as well as other Canadians. When combined with their family members, some three million Canadians are affected by intellectual disabilities, said the association.

The report estimates that almost 75 per cent of working-age people with intellectual disabilities who live on their own do so in poverty. Statistics show far fewer people with intellectual disabilities have jobs, and those who do work make about half as much money as other Canadians.

Thursday was International Day of Persons with Disabilities. In the House of Commons, National Defence Minister Peter MacKay tabled the United Nations Convention on the Rights of Persons with Disabilities, an accord which seeks to reaffirm human rights for disabled people worldwide.

Dept. Asst. Attorney General Bagenstos on Olmstead

December 3rd, 2009

Remarks by Deputy Assistant Attorney General Samuel R. Bagenstos of The Civil Rights Division at the Annual Convention of The ARC of the United States

November 13, 2009

Thank you for that warm introduction. I’m very pleased to be here to discuss the efforts of the Department of Justice to protect the rights of Americans with disabilities. It’s a very special pleasure to speak on the same panel as Governor Thornburgh. When I was in private life, I had the honor of serving as cocounsel with Governor Thornburgh in a case in which we represented the family of a boy with cerebral palsy, who successfully sought asylum based on the persecution of children with developmental disabilities in their home country. Governor Thornburgh’s example of rectitude and public service is one to which I certainly aspire. His strong support of the Americans with Disabilities Act is a salient demonstration that disability rights know no party—they are the fundamental human rights to which all Americans are entitled.

The great disability rights leader and thinker, Jacobusten Broek, said that the most fundamental right for people with disabilities was “the right to live in the world.” The right to live in the world means that people with disabilities—all disabilities—have the right to be full members of our Nation’s civic and economic life. It means the right to live, work, shop, and move about in the community. It means making good on our Constitution’s promise of equal citizenship. The right to live in the world was the basis for the Rehabilitation Act, the Individuals with Disabilities Education Act, and the ADA. It was the basis for the litigation that successfully moved people with intellectual disabilities out of inappropriate congregate institutions like this state’s own Pennhurst State School and into life in the community. And it is a guarantee our Nation has made to Americans with disabilities.

At the Civil Rights Division of the Department of Justice, we are working every day to make this right a reality. Our Attorney General, Eric Holder, has described the Civil Rights Division as the “crown jewel” of the Justice Department, and we often are called upon to serve as the conscience of the government. Under the leadership of Assistant Attorney General Tom Perez, who was confirmed last month, we are open for business. With a committed, energized career staff, and a political leadership dedicated to the goals of restoration and transformation— restoring the traditional tools of civil rights enforcement, while transforming our focus and approach to meet the problems of the Twenty-first Century—the Civil Rights Division is working with renewed vigor to enforce the civil rights of all Americans.

I want to talk today about two important components of the right to live in the world.  These aren’t the only components of the right to live in the world by any stretch—and they’re far from the only ones we focus on in our enforcement work—but they are of exceptional importance to people with intellectual and developmental disabilities.

First, the right to live in the world necessarily implies the right to move about in public places free from violence and crime. The Fourteenth Amendment guarantees the “equal protection of the laws.” In its original, core sense, this guarantee promises that the laws will protect all persons against infringements on their person or property, regardless of their status or group membership. But reality has too often failed to measure up to this promise for people with disabilities. According to a report issued by the Bureau of Justice Statistics last month, people with disabilities of a given age are more likely than their nondisabled counterparts to be the victims of violent crime, including rapes, robberies, and assaults. “For rape or sexual assault,” the report concluded, “the age-adjusted rate for persons with disabilities was more than twice the rate for persons without disabilities.” And people with cognitive disabilities experienced violent crimes at a higher rate than people with any other type of disability. In about a fifth of cases, violent crime victims with disabilities believed that they were targeted precisely because of their disability.

Hate crimes committed against individuals with disabilities are vastly underreported, and prosecutions have been rare and difficult even in the cases that are reported to authorities. There’s a big gap in our knowledge on this issue. But there are some important things we do know. We know that people with intellectual and developmental disabilities—both inside and outside of institutions—are among the most susceptible to bias-motivated violence. In one notable case—rare only because it was criminally prosecuted—eight men and women in New Jersey lured a man with cognitive disabilities to a party. A newspaper article described the treatment he received next:

When he walked in, still wearing his work uniform, one man put a choke hold on him and someone else cut his tie in half. Next they seized a small stuffed whale that he always carried and tore it apart as he watched.

They stripped him to his underwear, slapped him, kicked him and forced him into a plastic garden chair. They taped him to the chair and dragged it around the room[— something they copied from a horror film].

[One woman] tried to shave [the victim’s] head and eyebrows with a razor. Someone else completed the job with electric hair clippers.

They whipped him with a rope knotted with plastic beads across his naked chest, back and face, creating a grid of cuts and bruises.

They cut him from the chair and forced him to put on a bra and a woman’s green suit. They put a pillow case over his head and dragged him downstairs into a van[].

They drove to a marshy area [, where] the group marched [the victim] into the woods, punching him and slamming him to the ground. After about an hour, he got away and staggered to the guard booth on a nearby property.

Too often, violent attacks against people with intellectual and developmental disabilities are written off as some sort of “abuse” to be addressed by the social services system rather than as the crimes they are. That is especially true when the attacks occur in institutions, but it is true all over.

At the Department of Justice, we take these acts of violence extremely seriously. And just two weeks ago, President Obama signed a bill that gave us an important new tool to combat them. The Matthew Shepard and James Byrd, Jr., Hate Crimes Prevention Act creates the first general federal criminal prohibition of violence undertaken because of the actual or perceived disability of the victim. This new statute represents a major step forward in truly guaranteeing people with disabilities the equal protection of the laws, and we intend to enforce it vigorously.

So the right to live in the world means the right to go about one’s life free from violent attacks. But many people with intellectual and psychiatric disabilities are being denied the right to live in the world in an even more basic sense—to receive services, they must submit to confinement in inappropriate institutional settings. America no longer has its Pennhursts— behemoth institutions that housed 3,000 or more people with intellectual disabilities at a time— but smaller institutions, nursing homes, and other care facilities continue to unnecessarily segregate people with intellectual disabilities from the community and deny them the right to live in the world.

Avoiding unnecessary institutionalization is a matter of foundational civil rights for people with disabilities. Throughout history, people with disabilities have been pushed aside, shut out, and ignored. Whether because of fear or because of misplaced paternalism, people with disabilities were been forced to live in out-of-the-way facilities where basic, day-to-day decisions were made by others. People with disabilities became effectively invisible in the public square, and unfamiliarity combined with fear to encourage prejudice.

The Twentieth Century phenomenon of institutionalization of people with disabilities, which peaked in the mid-1950s, was but a later chapter in the same story. People with intellectual and developmental disabilities were confined to institutions for their care and protection, but institutionalization massively restrained their freedom. And as more and more people moved out of institutions in the 1970s and 1980s, we learned that nstitutionalization was often unnecessary for their care and treatment. This was true even for individuals who all observers had previously thought to need to live in institutions.

Consider Nicholas Romeo, a Pennhurst resident whose case went to the Supreme Court. He had what the Court characterized as a “profound[]” intellectual disability, “with an I.Q. between 8 and 10.” His own counsel had conceded, in light of what he called “the severe character of his [disability],” that Romeo could never live outside of an institution. Yet “ten months after the Court’s decision,” as the late Timothy Cook told us, “Nicholas Romeo moved to a community residence in Philadelphia,” where he lived successfully. That experience was typical of the residents released from Pennhurst.

The Americans with Disabilities Act, which Governor Thornburgh played such a key role in getting adopted, requires states and local governments to serve people with disabilities in the most integrated setting appropriate to their individual needs. In the landmark 1999 decision in Olmstead v. L.C., the Supreme Court held that the ADA therefore prohibits the unnecessary institutionalization of individuals with disabilities. As Justice Ginsburg explained in her opinion for the Court, that holding flowed from the statute’s basic prohibition of discrimination against individuals with disabilities. She said:

Recognition that unjustified institutional isolation of persons with disabilities is a form of discrimination reflects two evident judgments. First, institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life. [S]econd, confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment. [D]issimilar treatment correspondingly exists in this key respect: In order to receive needed medical services, persons with mental disabilities must, because of those disabilities, relinquish participation in community life they could enjoy given reasonable accommodations, while persons without mental disabilities can receive the medical services they need without similar sacrifice.

The Olmstead decision has often been called the Brown v. Board of Education of the disability rights movement, and this passage shows why. There, in that part of her opinion for the Court in Olmstead, Justice Ginsburg perfectly encapsulated the basic principles of disability rights—of Jacobusten Broek’s right to live in the world—and showed that they are core civil rights principles.

Olmstead celebrated its tenth birthday this year, and it’s fair to say that it has been a bittersweet one. In the first year or so following the Olmstead decision, many states worked to develop effectively working plans to move people with disabilities out of inappropriate institutional placements and into homes in the community. But the state budget crises of the early 2000s, and the economic difficulties that began last year, have stalled those efforts if not stopped them in their tracks. Today, Olmstead stands as an important, even historic, promise, but one that remains unfulfilled.

Tom Perez and I are committed to making good on that promise. As you probably know, President Obama has issued a proclamation declaring this year the “Year of Community Living,” and he has directed his Administration to redouble our efforts to enforce Olmstead. It’s not an exaggeration to say that I get up every morning and ask myself, “How can I enforce Olmstead today?” Although the Civil Rights Division has many important priorities in the disability rights area, Olmstead is at the top of the list. We have no more important challenge than the challenge of ensuring that states end inappropriate institutionalization and instead provide services in integrated, appropriate, community settings.

Let me tell you a little bit about what we are doing to invigorate our enforcement of Olmstead. Our lawyers are now looking systematically at identifying potential Olmstead cases—whether they are lawsuits that private plaintiffs have already filed, in which we could participate, or they are fact settings that seem ripe for an Olmstead investigation initiated by the federal government. Growing out of this process, we have moved to intervene in Disability Advocates, Inc. v. Paterson, a case involving people with psychiatric disabilities that is likely to be the most significant Olmstead case in the ten years of that decision. We are also moving aggressively to file amicus briefs—at all levels of the federal judiciary—to push the law forward in the unsettled areas that remained after the Supreme Court’s decision. We filed such a brief in a case currently under submission in the Eleventh Circuit, Long v. Benson, and we are actively considering amicus participation in a number of Olmstead cases pending in federal district courts. Over the next year, you will see us begin to open our own investigations of state systems on Olmstead grounds as well.

We are also transforming the way in which we carry out our responsibilities under the Civil Rights of Institutionalized Persons Act (CRIPA). Traditionally, our investigations and litigation under CRIPA have focused on institutional conditions. We have asked, essentially, what it would take to turn the institution we are investigating into the best institution it could possibly be. But Tom Perez and I believe that we cannot intelligently address a concern about inappropriate conditions at an institution without asking the logically prior question whether the institution is the appropriate setting for its residents. In our investigations of facilities for individuals with intellectual, developmental, and psychiatric disabilities, we often find that substandard conditions at those facilities are caused or exacerbated by having too many people in those facilities—and too many who do not belong there. In our findings letters and our filings in court over the last few months, we have made clear that Olmstead issues are deeply intertwined with problems of inadequate conditions, and we have resisted any effort to try to solve the conditions problem without looking at whether the people in the facility belong there. Over the next year, you will see our CRIPA lawyers investigating possible Olmstead-only cases, in which we sue a state for violating Olmstead but do not at the same time challenge the conditions at its facility.

In resolving Olmstead matters in this administration, we have sought to get states to take a two-pronged approach. The first prong is discharge planning. We have told states that they have to have a process in place, for each resident, that determines that resident’s appropriate placement according to professional standards. If that process determines that the resident should be placed in a less segregated setting, the state should follow that determination. And the state should provide extensive means of educating residents and their parents or guardians about the benefits of community placement.

The second prong is community capacity. Olmstead cannot work unless individuals who are discharged from institutions have somewhere to go. That somewhere has to be safe, it has to provide adequate and appropriate services, and it has to be the most integrated setting appropriate to the individual resident. We have been seeking enhancements to community capacity in a number of our open Olmstead matters. We are working closely with our partners at HHS, HUD, and elsewhere to seize opportunities to use available federal funding in a way that enhances community capacity and promotes integration.

These are not easy tasks, and we have a long way to go. But the ADA has been on the books for almost 20 years and Olmstead has been on the books for 10. The time for delay has past. The time for compliance has come, and it is long overdue. To guarantee people with disabilities the right to live in the world, we must—and will—be aggressive in enforcing the ADA and the Matthew Shepard hate crimes bill. We have no illusions about the significance of the challenges ahead. But we will make progress, inexorably, toward fully enforcing those guarantees. Dr. King said that “[t]he arc of the moral universe is long, but it bends toward justice.” The right to live in the world is a matter of fundamental justice for people with disabilities. If we all work together—the Department of Justice, the advocacy community, and the protection and advocacy network—we can make that right real. Thank you.