From the Idaho Statesman and AP/Seattle Post-Intelligencer:

Vice-President Joe Biden announced during an appearance at the Special Olympics World Winter Games on Thursday that Kareem Dale has been named special assistant to the president for disability policy. Dale, who worked on the Obama campaign as national disability vote director, will have “absolutely direct access to the president,” Biden said.

“This is a civil rights movement,” Biden said. “There’s a need to have changes in policy.”

The nation needs policy changes that will ensure Americans with disabilities can get and keep fulfilling jobs without worrying about losing government-funded health insurance or other assistance, Biden said.

Advocates have long complained that programs like Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare essentially force disabled workers to leave their jobs or prevent them from working so that they can qualify for the medical care they need.

See also:

Skater fights through memory loss and nails her routine – Idaho Statesman

Continuing coverage by the Idaho Statesman

UPDATE: Press release here.

By Christina A. Samuels in Education Week (subscription only):

Advocates for students with disabilities say new Secretary of Education Arne Duncan did not pay particular attention to disability issues during his seven years as head of the Chicago school district.

They’d like to see that change. Among their specific requests: a crackdown on the use of restraints and seclusion as school disciplinary measures; the completion of federal regulations for educating infants and toddlers with disabilities; better training for teachers; and a greater focus on educating students in the least-restrictive environment.

“He’s not been a great supporter of special ed. I don’t think he dislikes special-needs kids; it just wasn’t on his radar screen during the time he was here,” said Rodney D. Estvan, the education outreach coordinator for Access Living, a Chicago advocacy group for people with disabilities.

Elevate disability policy within the White House Domestic Policy Council

From Rud and Ann Turnbull, co-founders and co-directors
Beach Center on Disability
The University of Kansas

Background

The audacity of hope lies in the heart of the disability community.

The insistence on rights is still part of its daily agenda.

As individuals with disabilities and their families perform their civic responsibilities, they prove that rights create opportunities for effective citizenship.

The integration of disability policy into other policies can threaten individuals and families affected by disabilities; there are no assurances that policy reforms will always be disability-sensitive and provide for reasonable accommodations or other means for equal treatment.

But the integration of disability policy also creates opportunities because policy-integration advances integration and full participation of people with disabilities.

Individuals with disabilities and their families need a change they can believe in – a change that only President Obama and his leadership team can offer.

They need the opportunity to participate as equals in domestic policy debates.

So, we propose elevating disability policy.

Proposal

The President should create a Disability Policy Section within the White House Domestic Policy Council.

The Disability Policy Section should have the same status, opportunities, responsibilities, and staffing as policy sections related to all other major areas of domestic policy.

(more…)

Editor’s note: Coverage of the Down syndrome angle in relation to the candidacy of GOP vice presidential candidate Sarah Palin is growing steadily. (Palin’s youngest son, Trig, has Down syndrome that was diagnosed prenatally.)

Rather than present each item as a separate post, we’ve decided to group them here. Click on the headline above to get the full version, or on ‘read the rest of this entry’ below, and please check back to our home page throughout the day for further developments.

PRENATAL TESTING:

New Down syndrome test hailed as promising; Siblings say test could affect dwindling numbers and raises ethical questions; Population with Down syndrome could drop — ABC News

… the medical community is excited about a new non-invasive blood test in the first trimester that detects genes that are behaving in a way that is linked to Down syndrome.

But advocacy groups warn that the test — which gives women the option to end a pregnancy sooner — could diminish an already small population of about 400,000 who have Down syndrome.

… “It’s ‘Gattaca World,’” said Los Angeles film maker Will Drinker, referring to the 1997 movie about a society that analyzes its citizens’ DNA to determine where they belong.

… The prenatal test, called SEQureDX , is being developed by the San Diego-based company Sequenom, which will conduct further studies this fall and hopes to market the product in early 2009.

Click here for a Sequenom message board on Yahoo.com in which commenters share views about the Palin candidacy’s potential impact on Sequenom’s stock price.

See earlier post on Sequenom. Business Week columnist says its first trimester screen for Down syndrome could help it dominate a market with multibillion-dollar potential.

COMMENTARY:

Sarah Palin, Down syndrome & the brave new world — Valerie Karr in the New York Daily News

Republican vice presidential nominee Gov. Sarah Palin has put children with disabilities in a national spotlight.

(more…)

Christine Rosen, writing in the Wall Street Journal, memorializes Harriet McBryde Johnson as someone who made society look at disability as a natural part of the human experience. Johnson, she says, demonstrated that disability transcends the convenient categories that often stymie political discourse: secular or religious, liberal or conservative. Johnson held up a mirror to a society whose acceptance of disability wanes as its scientific powers to eliminate disability grow.

As an example, Rosen cites the “rapid near-disappearance of people with Down syndrome.”

As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a “democratic calculus of worth” regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

… if choice and prevention produce a culture that equates disability with irresponsible parenting decisions, then the homage we pay to accommodation will prove hollow indeed. And as the population ages, and more Americans find themselves living with disabilities, questions about worth at the end of life will become even more pressing. Thanks to people such as Harriet Johnson, we have not yet reached the point where accommodation has given way to neglect or elimination. But we would do well to respect what Ms. Johnson’s own life so ably demonstrated: People with disabilities, she said, “have something the world needs.”

Christine Rosen is senior editor of The New Atlantis: A Journal of Technology & Society, and the author of Preaching Eugenics: Religious Leaders and the American Eugenics Movement.

Writing in the Boston Globe, former U.S. ambassador Jean Kennedy Smith calls for an international effort to support refugees who have disabilities. These people are neglected, marginalized and largely invisible, she says, and have long been excluded from care programs because there was little reliable data on their numbers.

An upcoming report by the Women’s Commission for Refugee Women and Children documents that there are up to 3.5 million refugees with disabilities around the world.

We know from witnessing many examples of remarkable people who have overcome the barriers surrounding disabilities that they, too, possess skills, knowledge, and experience that can help them remake their lives and rebuild their communities. Yet for much of the world, displaced people who are disabled simply do not exist.

Because their situation is widely viewed as peripheral to that of the overall refugee population, they rarely figure in tallies of the displaced. And there is usually little or no provision for them in mainstream assistance programs, let alone services tailored to their specific needs. Leaders of such programs should provide services and end this squandering of human potential.

… if we care enough to do enough, anything is possible.

Parents who want to save to help their children with disabilities should be eligible for tax breaks just like parents who save for college education, says a Washington Post editorial.

Several bills have been introduced in Congress to create tax-free savings accounts for people with disabilities. They could help families provide a financial cushion without endangering eligibility for Medicaid or Supplemental Security Income (SSI).