Writing in the National Review, Sen. Sam Brownback (R-Kansas) says a bill he successfully co-sponsored with Sen. Ted Kennedy (D-Mass.) will help deflect a “eugenics mentality” that threatens to eliminate a whole class of people — children with Down syndrome –  before they can be born. An excerpt:

The Prenatally and Postnatally Diagnosed Conditions Awareness Act got final approval from Congress last week. The measure will provide support and balanced information to families upon diagnosis, and will establish a national registry of families wishing to adopt children with disabilities.

The irony is that if children with Down Syndrome make it out of the womb, their prospects in life are brighter than ever. Children and adults with Down Syndrome are often the centerpieces of their families. They have amazing gifts and are full of affection. Many adults with Down Syndrome have jobs, live independently, and make valuable contributions to the communities in which they live. (more…)

Writing in The Lancet (subscription required), Kelly Morris says life expectancy for people with Down syndrome has improved dramatically over the past half century, yet research to improve health, cognition and learning among people with Down syndrome has not kept pace. Many in the field say such research has been neglected and underfunded.

Morris says NIH funding for Down syndrome research stands at $17 million this year, down 26 percent from $23 million in 2003. Experts say the NIH is focusing its immediate attention on mouse models, rather than on studying ways to improve the lives and cognitive function of people who have the disorder. “Many would argue that these priorities are the wrong way round,” says Frank Buckley of Down Syndrome Education International.

Writes Morris:

… A shift in focus towards studying variables in people with Down syndrome, especially those that affect learning and cognition, would be most welcome. Such research could also point to differences in the biology of Down syndrome that can promote further useful, straightforward interventions, which is important since specific drug treatment can require years of further investigation.

The article appears in Vol. 372, September 6, 2008.

From CNN:

Nineteen-year-old Zach Wincent of St. Charles, Illinois, has a satisfying life. He was prom king in high school, now attends community college and works at Target. Zach’s life demonstrates the improved circumstances of people with Down syndrome in the United States, thanks to advances in education and medical care.

An excerpt:

Life with Down syndrome has changed dramatically in the past century. In 1929, the average life expectancy for a person with the condition was 9 years, but today, it is 58 to 60, said Nicole Schupf, associate professor of clinical epidemiology at Columbia University Medical Center.

(more…)

From the [Toronto] Globe & Mail:

Parents of kids with learning disabilities are turning to independent schools like Toronto’s Arrowsmith School, which has affiliates across Canada and the U.S. The school uses targeted exercises to stimulate specific parts of the brain, with students working on specific skills for at least half of their school day.

The cost per student is about $19,000 a year for full-time studies at the Toronto campus, which serves about 60 pupils. Students usually attend the school for three years and then return to regular classrooms.

From the Boston Globe:

Gov. Deval Patrick and other officials gathered disability advocates in the Massachusetts State House yesterday to highlight a series of improvements that will make the building accessible to all citizens.

The changes, with an estimated pricetag of tens of thousands of dollars, were spurred by a 2005 lawsuit alleging that the State House did not comply with the Americans with Disabilities Act. The lawsuit was settled last year when the state pledged to make improvements.

Among the improvements made over the course of the past year are new power door lifts, closed-captioning for webcasts of legislative debates, and signlanguage interpreters available when requested for any proceedings. At the press conference, officials demonstrated screens that can be placed in meeting rooms and that can display the text of a speaker’s words in real-time.

… “American democracy only works when all have an opportunity to participate,” Patrick said. “And that has to as a practical matter include the ability to get access to this building physically and to the business of this building through communication.”

(Globe photo: Carl Richardson, coordinator of disability access for the Bureau of State Office Buildings, unveils changes.)

From Good Morning America:

Celebrity author Jenny McCarthy promotes her new book, “Mother Warriors,” in an extended interview with Diane Sawyer. (Video here.) She blames a “bloated” schedule of childhood vaccines for the rise in autism diagnoses, saying, “It’s ignorant to think that all children can handle these shots.”

McCarthy promotes a wheat-free, dairy-free diet and other measures as remedies. “This is very real — our kids can get better,” she says. Her book is being promoted as a collection of “recovery stories” from parents of children with autism.

Dr. William Schaffner of Vanderbilt School of Medicine urges caution, saying the link between diet and autism has not been verified. Diane Sawyer’s words:

Inside the autism community, McCarthy’s a heroine. But her views on childhood vaccines have been dismissed by the mainstream medical community. They say study after study shows in most kids there’s no evidence that vaccines cause autism.

See also: Got Milk? PETA unveils billboard claiming link between milk and autism — Newsday

UPDATE: McCarthy slams actress Amanda Peet over vaccine remarks — Fox News

(Photo: Screen capture from ABC News.)

Minette Marrin, writing in the [UK] Sunday Times, draws a connection between Baroness Warnock, who said people with dementia have a “duty to die”, and Joanne Hill, who drowned her daughter because she was apparently ashamed of the girl’s cerebral palsy.

It ought to be obvious that what Warnock said and what Hill did was wrong and that one leads directly to the other. The thought is father, or rather mother, to the deed. What’s alarming is that Warnock has had official influence on public policy in such matters. All the same, I think there is room for more compassion and careful consideration in both cases.

… Having grown up close to such questions, I’ve come to realize that shame is not only natural but understandable. One feels at a deep level like a failure as a mother or father. Men often feel this much more strongly than mothers and don’t want to be associated with a damaged child. Well-adjusted people are able to put this shame behind them and I think it’s a mark of a good person in a civilized society that she or he can do so. But it may be difficult. A poorly adjusted person may find it impossible.

… None of this makes [Hill] innocent of murder, but it is ground for some compassion and understanding rather than righteous indignation. I suspect the indignation comes from an unwillingness –- an inability -– to confront the inescapable harshness of disability and the painful truth that it is indeed a burden.

See also:

Now our intellectuals think the old and frail have a ‘duty to die’, we are on the path to barbarism, op-ed by Melanie Phillips in the [UK] Sunday Mail

Do the demented have a duty to die? op-ed by Ken Connor on townhall.com. Connor is chairman of the Center for a Just Society