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Archive for May, 2010

Rosa’s law regarded as non-controversial

Sunday, May 23rd, 2010

Bipartisan measure would take ‘retarded’ out of federal lexicon

The Hill reports as non-controversial a bill that would eliminate all references to the terms “mental retardation” and “mentally retarded individual” in federal law.

Known as Rosa’s Law, the bipartisan measure will be marked up in the Senate Health, Education and Pensions Committee this week. It is patterned after a Maryland statute that was passed unanimously last year.

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

The measure has 42 bipartisan co-sponsors in the Senate and 30 in the House. Maryland Sen. Barbara Mikulski, who introduced the bill, has said it “will not expand nor diminish services, rights or educational opportunities.”

Massachusetts families fight to keep institution open

Sunday, May 23rd, 2010

As Massachusetts approaches a June 30 target for closing the Fernald Developmental Center in Waltham, families of its 89 residents are fighting to keep the 200-acre institution open.

Here’s a sampling of some recent coverage:

They fight for Fernald — Waltham, MA, Daily News Tribune. Nearly 50 people gathered to picket at the Fernald Developmental Center in a protest organized by the American Federation of State, County and Municipal Employees Local 402. As union members, guardians and family members of residents carried signs, a large balloon overhead bore a sign that read: “Save Fernald, stop evicting the disabled.”

“What they have done is intimidate old men and women, in the twilight of their life, into moving their very vulnerable loved ones. It’s so disgusting and reprehensible. The governor is sitting aside while his administration is evicting mentally retarded people from their homes. He should be ashamed of himself,” said a spokesman for the group.

Fernald closure saves money — Waltham, MA, Daily News Tribune. Guest columnist Gary Blumenthal writes that the state cannot afford to maintain a six-campus institutional system that was built to house over 10,000 people and now serves only 798.

States have worked hard to close these institutions in favor of community- based programs that offer equal or better care at substantially less cost. States have moved in this direction based on over 30 years of best practice recommendations from disabilities professionals; and non-partisan groups such as the National Conference of State Legislatures. NCSL advises its members that the cost of state institutions is often up to six times higher serving essentially the same people as those in community programs. Decades of research conducted by the American Association on Intellectual and Developmental Disabilities confirms that community-based care is of higher quality and satisfaction to families whose loved ones have made a transfer from institutional to community services.

Closure of state institutions is a sound programmatic and fiscal policy and is inevitable.

In the swim of things — Boston Globe. Columnist Yvonne Abraham says the swimming pool at the Fernald Center is a welcome spot for hundreds of area people with various disabilities because it allows them the respite of a place where “everybody is different, so nobody is.”

Those who favor the Fernald closing believe the time for separating those with profound disabilities from the rest of society passed long ago. It’s a noble view. But as [family members of people with disabilities] see it, the rest of society isn’t always quite ready for them. Now there will be one less place where they can forget that.

Time to listen to the voice of despair — Boston Herald. Columnist Joe Fitzgerald interviews Mary Galvin, the sister of a Fernald resident. She says she fears her brother Eddie will be sent to an institution “comparable to what you saw in One Flew Over the Cuckoo’s Nest” unless some politician steps in to halt the planned Fernald closure.

“I’m still looking for someone with a conscience,” she said. “But I also know that time’s running out.”

UPDATE: ‘Disabled can find opportunities in the community’ — letter from Gary Blumenthal in the Boston Globe. Blumenthal, a recent appointee to the National Council on Disability, refutes Yvonne Abraham’s column (above). An excerpt:

When Abraham writes about the pool at the Fernald Developmental Center – the state’s largest institution, which is slated for closure this year – she is writing about a segregated facility. Our society proved generations ago that separate but equal is a bad idea that does not work.

My brother has autism and swims three times a week at the pool at his local Jewish community center. The others who go to that pool have accepted him and welcome him warmly every time. He is a part of that community.

Massachusetts and all of its residents deserve no less.

Home services disappearing as states slash Medicaid

Thursday, May 20th, 2010

From the Wall Street Journal:

Around the country, shrinking state budgets and rising health-care costs are forcing drastic cuts in home services to people with disabilities. Because federal mandates restrict what states may cut inside Medicaid, states are often cutting basic services that help people with disabilities remain in their own homes.

This is happening even though home services are cheaper and more cost effective than institutional care. Experts say it’s politically easier to cut back individual services to people at home than to close a 24-hour facility. But many worry that the cuts could push more people into costly institutions or large group homes because that is where services are guaranteed.

“My biggest fear is having to go to an institution,” says Jimmy “Chip” Eubanks of Clinton, S.C., who has cerebral palsy and lives at home.

People with intellectual and developmental disabilities are particularly at risk for service reduction, experts say, because the per-person cost of their services is about 10 times higher than that of the average Medicaid recipient.

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

Some of the biggest cuts are coming in South Carolina, where Medicaid already consumes about 20 percent of the state’s budget and is one of its fastest growing costs. In Aiken County alone, more than 5,000 people languish on waiting lists for various services. “We want to give families hope to keep their family unit together, but in reality there is very little we can put in place to assist them,” says the head of the county’s disabilities board.

As LA drops summer special ed for adults, a teacher objects

Thursday, May 20th, 2010

By columnist Dennis McCarthy in the Los Angeles Daily News:

The Los Angeles Unified School District has cancelled its summer classes for adults with developmental disabilities for the first time in 20 years, thanks to the budget crisis. Veteran special ed teacher Robert Zazula, who will be laid off for the summer as a result of the cuts, is angry that his students won’t be served even as English-as-second-language classes are preserved.

An excerpt from McCarthy’s interview with Zazula:

“My people matter, and for anyone to say they don’t, whatever the reason, is wrong,” the Bronx, N.Y.-born teacher says.

“These people were born into a world where they are not as fortunate as the rest of us. They need our continued support. Now that there’s a budget crisis we’re going to forget about them?”

… “Why ESL classes all year and not the disabled? We don’t matter anymore?”

‘What would you do?’ Reactions to staged abuse of clerk with DS

Thursday, May 20th, 2010

On a segment of ABC’s “What Would You Do?” that aired Wednesday, customers in a Brooklyn grocery store found themselves trapped in a checkout line behind rude shoppers who berated a bagger with Down syndrome. The customers didn’t know that the clerk and the rude shoppers were all actors. Hidden cameras recorded everyone’s reactions to abusive language that the show described as happening “all too often” in real life.

“You’re absolutely retarded, dude! You have to go faster,” an actress shouted.

While some customers ignored the abuse, others spoke up in defense of the clerk, played by actor Josh Eber. “He’s a person, the same as you and I, with feelings,” said a woman identified as “Karen”, a teacher who has taught children with disabilities. “Everybody deserves an education. Everybody deserves a job, and everybody deserves a chance in this life. And you should be ashamed of yourself.”

Madeleine Will of the National Down Syndrome Society underscored the hurtfulness of insults like the word “retard.” She called on the public to speak up against verbal abuse.

“When we’re silent, our silence condones the language,” she said. “It’s important to say, again and again, this is wrong, this is not fair, this is not how we treat other people.”

Discredited autism doctor vows to continue research

Thursday, May 20th, 2010

From the Austin [TX] American-Statesman:

Andrew Wakefield, the British doctor whose research triggered a worldwide vaccine scare, says he expects to lose his British medical license soon but intends to continue his research in Austin.

In an interview, Wakefield said he is more convinced than ever that he was right to suggest connections between autism, vaccines, and gastrointestinal illness. Earlier this year, the UK’s General Medical Council ruled that Wakefield acted dishonestly and irresponsibly in research that led to the 1998 publication of a paper which claimed a link between autism and the vaccination for measles, mumps and rubella. The Lancet journal subsequently retracted Wakefield’s paper.

In his first in-depth interview since the council’s findings, Wakefield – hailed as a hero by some parents and a false prophet by many doctors – said the charges were unfair, false and pre-determined from the outset because he dared to take on the vaccine industry. He said he does not intend to fade away.

The interview with Wakefield came as researchers at the University of Rochester announced a small study failed to find an improvement in symptoms among children with autism who switched to a diet free of free of cereal grains and dairy products. (From USA Today.)

Actors share disabilities with their characters

Thursday, May 20th, 2010

From National Public Radio:

Guest-starring in a recent episode of the Fox sitcom Glee, actor Zach Weinstein played a high school student who was paralyzed in an accident. Unlike many actors who play people with disabilities, Weinstein actually has the disability his character displays on TV.

Michael Patrick Thornton, who appears in a wheelchair on the Grey’s Anatomy spinoff Private Practice, also shares a disability with the character he portrays. Thornton had a spinal stroke in 2003.

“Do they consider us equally for parts?” Thornton says, “Obviously no, because disabled actors are so underrepresented on stage and screen.”

Film history is full of nondisabled actors who have gotten kudos for playing characters with disabilities. Among them: Dustin Hoffman in Rain Man, Daniel Day-Lewis in My Left Foot, Tom Hanks in Forrest Gump, Tom Cruise in Born on the Fourth of July, and Jon Voight in Coming Home.

(Photo of Zach Weinstein from NPR)

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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