From the [Salt Lake City, Utah] Deseret News:

Some 500 people with disabilities have set up a tent city at a major government agency to protest what organizers say is federal underfunding of housing options for people with disabilities. They are occupying a spot outside the U.S. Department of Housing and Urban Development office building.

Event organizers from the advocacy group ADAPT said candidates are talking about young children with disabilities, but they should be talking about adults with disabilities who must try to survive on extremely low incomes.

Advocates said they planned to stay at the encampment until Thursday to lobby for the Community Choice Act, which would help people with disabilities live on their own instead of being forced by circumstances to live in nursing homes and care centers. Barack Obama has endorsed the measure, while John McCain has opposed it.

From the McClean, Virginia, Connection:

Ten people were arrested at the Arlington, Virginia, headquarters of Sen. John McCain this week after a group of ADAPT protesters entered the office and refused to leave. After a standoff that lasted several hours, police officers ejected them. They were charged with trespassing. “They can protest,” said one officer, “But they can’t protest on private property.”

See earlier posts here and here.

Guest commentary:

What Kind of Advocacy

Do Americans with Disabilities Really Need?

By Paul K. Longmore

Ever since Sarah Palin’s acceptance speech, the “needs” of children with disabilities have gotten a lot of press. Palin pledged to be a “friend and advocate” for those children. News stories have reported the excitement of parents and other people in the disability rights constituency that disability issues are finally getting some attention. Some of them have decided to support the election of Palin and John McCain. But do the Republican candidates offer the kind of advocacy Americans with disabilities really need? I don’t believe they do, and I want to explain why I am voting for Barack Obama and Joe Biden instead.

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Editors at the Chicago Tribune say Illinois should shift its priorities toward community-based care for people with disabilities. The state has just announced the closing of the Howe Developmental Center, an institution for people with disabilities that lost federal funding after reports of substandard care and needless deaths.

Illinois has relied much too heavily on expensive, large-scale institutions to care for its developmentally disabled residents … more than most states. There is a place for such institutions. But most developmentally disabled residents flourish in smaller, community-based settings. Many people are able to integrate into the community and work outside the home.

The editorial notes that institutional care is much more expensive, costing the taxpayers about $140,000 a year for each person in an institution as compared with $50,000 a year for community care.

See earlier posts here and here.

From the Associated Press:

Government investigators have found a pattern of serious problems and abuse in a large Kentucky institution for people with intellectual disabilities, but the state’s political leaders won’t consider closing it.

Bluegrass Communities at Oakwood houses 220 people in a segregated setting. Nationwide, the trend has been to eliminate large care centers and serve people in apartments, houses or group homes in the community.

The financial stakes here are high. Federal officials cut off the center’s $60 million annual funding this spring after receiving reports of poor treatment of residents, and the state has since picked up the entire $78 million annual cost of operations. The facility employs 1,300 people, and there are allegations that the state is keeping people segregated in an institution for the purpose of maintaining jobs in rural southern Kentucky.

“I don’t think it’s reasonable public policy to keep people in institutions just because a community needs jobs,” said Peter V. Berns, executive director of the Arc of the United States.

‘Parents of Special-Needs Children Divided Over Palin’s Promise to Help’ — New York Times

Some parents of children with disabilities are enthusiastic over Gov. Palin’s pledge of support, but advocacy on behalf of the disability community has not been “a centerpiece of Ms. Palin’s 20-months in office or any of her campaigns for office.”

“I never heard Governor Palin say as governor, ‘You have an advocate in Juneau,’ ” said Sonja Kerr, a lawyer specializing in disability law in Anchorage.

A spokeswoman for Palin would not elaborate on her decision to give disability issues prominent placement in her acceptance speech.

John McCain has voted against increasing federal special education funding, and also opposes legislation that would help states move people with disabilities from institutions into community living arrangements. Both Sen. Obama and Sen. McCain are among sponsors of pending legislation to update and strengthen the Americans with Disabities Act.

Ms. Palin’s effort to rally parents of children with disabilities has also prompted reaction among those who fear that her idea of advocacy might really mean preventing abortions of fetuses with Down syndrome, rather than lobbying for the early medical and developmental assistance that is so crucial to their children’s well-being.

(New York Times photo of Nancy Iannone and daugher Gabriella. Nancy is a contributor to the book Gifts, and comments regularly on these pages.)

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Candidacy is a chance to shed light — Beverly Beckham, in the Boston Globe, writes another in an occasional series of columns offering glimpses of her lively and inquisitive granddaughter. She describes five-year-old Lucy as she runs, bounces and skips through her life, and sits on the floor reading “book after book.” Lucy has Down syndrome. Beckham says it would be valuable if Palin’s candidacy …

… illuminated the facts about DS. Because without public education, her 4 1/2-month-old baby boy may see his whole life defined by what he can’t do instead of by what he can do. He will be pigeonholed and pitied and underestimated. And he will make people turn to their own offspring with a sigh and a whispered prayer of thanksgiving, “There but for the grace of God, go I.”

Unless the world learns better.

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From Samantha Henig in Newsweek magazine:

Disability rights advocates were enthusiastic about GOP vice presidential candidate Sarah Palin, but wondered how she will follow through on her promise to be “a friend and advocate in the White House.”

While some parents were delighted at the prospect of being represented by another parent of a child with a disability (Trig Palin, above), other advocates questioned whether a Republican administration would fund needed services. Special education funding was named as a big concern, as well as supports for employment and housing.

Among those quoted were David Braddock, executive director of the Coleman Institute for Cognitive Disabilities at the University of Colorado (”"These are words that are easy to say, but apparently more challenging for some presidents to implement”) and Peter V. Berns, executive director of the Arc of the United States (The country is “on the precipice of a major crisis.”)

David Tolleson, executive director of the National Down Syndrome Congress, said he wasn’t troubled, as some liberal bloggers were, at Palin’s bringing her infant son along to the convention celebration. “So far, all that I’ve seen is what I’ve seen from every other candidate as long as I’ve been watching conventions,” he said.

(AP/Newsweek photo)

Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.

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