From USA Today:

Groups representing people with Down syndrome say Sarah Palin could help boost efforts to help people with disabilities live more independently.

Among the priorities they cited were additional funding for physical therapy after birth, long-term financial incentives to help people with Down syndrome pay housing and medical bills into adulthood, and strengthening the No Child Left Behind law.

They also called for lifting the $2,000 cap on assets for Medicaid eligibility requirements, because the cap encourages people with disabilities to make less money in order to qualify for federal benefits.

Madeleine Will, vice president of public policy for the National Down Syndrome Society, said advocates also want Congress to make changes such as:

• Requiring doctors to provide more detailed information about Down syndrome to parents who receive prenatal and postnatal diagnoses, including life expectancy data and contacts of local support groups. The idea has support from lawmakers on both sides of the abortion issue.

• Allowing families to save money in tax-exempt accounts that can be used to pay for expenses associated with education, medical treatment and employment training.

‘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.

(more…)

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.

(more…)

… how Sarah Palin can juggle a career and a child with Down syndrome:

Ask Rosario Marin.

Marin was treasurer of the United States from 2001 to 2003, and now serves as secretary of California’s State and Consumer Services Agency. A Republican, Marin got her start in politics by working in disability advocacy. Her son Eric is a young adult with Down syndrome.

From Time magazine’s Realclearpolitics blog, coverage of a press conference called by top Republican women to defend Palin’s ability to lead. Among those featured were Marin, former Massachusetts governor Jane Swift, senior McCain aide Carly Fiorina, Rep. Marsha Blackburn of Tennessee, and Renee Amore, deputy chairman of the Pennsylvania Republican Party.

Palin critics have questioned whether it’s wise for the Alaskan governor to seek the vice presidency while she has a baby with Down Syndrome. A charge to which Marin said: “No one has asked Barack Obama [this question] when he has two children at home.”

“I am outraged; I am insulted; I am offended,” said Marin.

Here’s a link to Marin’s page at the state of California’s website, and at the U.S. Department of the Treasury.

(Time photo. Marin in foreground; behind, l-r, Amore, Swift and Fiorina.)

Introducing herself and her family to the American public by way of the Republican convention last night, vice presidential candidate Sarah Palin made her first campaign promise. She pledged to work on behalf of families whose children have disabilities.

As Palin spoke, TV cameras followed her infant son Trig being passed from lap to lap by members of the Palin family and by Cindy McCain, wife of GOP presidential candidate John McCain (below).  When she finished speaking, she held him in her arms onstage (above). Trig has Down syndrome.

A brief transcript of that portion of Palin’s speech:

We were so blessed in April. Todd and I welcomed our littlest one into the world. A perfectly beautiful baby boy named Trig.

You know, from the inside, no family ever seems typical, and that’s how it is with us. Our family has the same ups and downs as any other, the same challenges and the same joys. Sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love.

To the families of special needs –  (crowd rises to its feet applauding) –- to the families of special needs children all across this country, I have a message for you.

For years you’ve sought to make a America a more welcoming place for your sons and daughters. And I pledge to you that if we’re elected, you will have a friend and advocate in the White House. (cheers)

(Photos from New York Times, Washington Post)

With no hope for recovery, death is the only way out

Ann Curry, on Dateline NBC, takes a film crew into Serbian institutions that look much the way institutions did in the U.S. a generation ago.

People with intellectual disabilities are shunned and warehoused, imprisoned without supervision under filthy conditions behind crumbling walls and rusted bars. They are given no treatment and meager care that may include being drugged or tied up day after day to control the anxiety and aggression that comes of being locked away. One man has been imprisoned in a crib for all of his 21 years. Among those shown are people with cerebral palsy, Down syndrome and other conditions.

Disability is a source of deep shame in Serbia, and parents are urged to put children with intellectual disabilities away in remote government institutions or risk financial ruin. Some surrender their children without ever glimpsing their faces.

Rasim Ljajic, a government official in charge of the institutions, acknowledged that the conditions are inhumane, but said the government does not have resources to fix the situation.

Said Laurie Ahern, associate director of Mental Disability Rights International:

The idea of being locked away and the idea that somehow these people, that their lives aren’t valuable, that they are less than human, because they were born with a disability. It’s horrendous.  And it’s awful. And it shouldn’t happen.

The video is here.

See earlier post here.

See also:

Reporter’s notebook, by Tim Sandler, NBC News producer

Shunned: Photos from inside Serbia’s mental institutions