Writing in the American Spectator, Daniel Allott says high rates of selective abortion of fetuses with Down syndrome reveal “a culture increasingly unaccepting and intolerant of children with developmental disabilities, who often face brutal and sometimes deadly prejudice.”

Allott says a fundamental misconception about the lives of people with intellectual disabilities is at the root of prejudice against them. He says the Prenatally and Postnatally Diagnosed Conditions Awareness Act, signed this week by the president, is needed to give parents accurate information about what it’s like to raise a child with a developmental disability. An excerpt:

People with developmental disabilities challenge our view of the world. Because they require more patience and self-giving, they can be sources of growth, tolerance, joy and hope to those they encounter. Unlocking these powerful truths is especially important in a time when superficial, exploitative and selfish relationships have become all too common.

From the Wall Street Journal:

A growing number of financial service companies are springing up to help parents provide for the future care of their children with disabilities. They help navigate the maze of federal and state programs, and assist parents in setting up trusts, coordinating estate plans, and educating future caregivers.

These tasks have become increasingly vital as people with disabilities are living longer than ever before, frequently outliving the parents who support them.

Miami lawyer Barry Nelson (far left) set up a special-needs trust for his fourteen-year-old son Jesse, who has autism. The trust will be funded by life insurance when Nelson dies, and can be used to pay for expenses beyond what Medicaid or SSI would pay for.

Nelson says a special-needs trust “gives me — and it gives every parent — peace of mind.”

A sidebar provides a list of financial planning resources.

(Wall Street Journal photo)

LOS ANGELES — A coalition of performing arts unions today announced the launch of a major disability rights campaign to increase visibility and employment opportunities for actors, broadcasters and performers with disabilities throughout the entertainment and news media.

At briefings in Los Angeles, New York and Washington, leaders of the Screen Actors Guild, the American Federation of Television and Radio Artists and the Actors’ Equity Association said the campaign would work to reverse a history of exclusion and bring the world’s largest minority into the media mainstream.

“There is an alarming absence of people with disabilities in the media.  We are virtually invisible,” said “CSI” regular Robert David Hall (above), who uses prosthetic legs as a result of an accident 30 years ago. Hall, who serves as chairman of the tri-union committee of performers with disabilities, told a news conference at SAG’s Los Angeles headquarters that he plays one of only three disabled characters in recurring television roles.

“Kids and adults with all kinds of disabilities need to see positive images of themselves, and the world at large needs to see PWDs (people with disabilities) as the intelligent, talented and passionate human beings that we are,” he said.

SAG president Alan Rosenberg drew parallels between this effort and campaigns for civil rights protections for racial and ethnic minorities, women, lesbian and gay people, and seniors.

“The time for change is now,” he said. “Discrimination has to be challenged loudly, with a global effort to educate the public to the lack of inclusion and universal access in the entertainment industry.”

(more…)

Stanford test performs accurately on 18 samples

From the BBC, San Jose Mercury News, New York Times, Nature News, Stanford University press release on Marketwatch:

Stanford University researchers say they have designed a new prenatal test that uses a maternal blood sample and would be much safer than current methods like amniocentesis, according to a study published Monday.

Current prenatal genetic tests like amniocentesis and chorionic villus sampling (CVS) carry a small but significant risk of miscarriage, with estimates ranging from one-half a percent to two percent. “Right now, people are risking their pregnancies to get this information,” said Yair J. Blumenfeld, a Stanford postdoctoral medical fellow and co-author of the paper describing the technique.

Stanford scientists say their technique will allow parents to spot Down syndrome and other genetic conditions earlier in pregnancy than with amnio and CVS, avoiding the risk of miscarriage.

(more…)

… Obama has substantive plans for all people with disabilities

Writing in huffingtonpost.com, Paul K. Longmore says presidential campaign coverage has included a lot of talk about “special needs” children, thanks to Sarah Palin, but little about the issues that concern the 54 million Americans with disabilities of all ages.

Longmore compares the stances of the McCain-Palin ticket and the Obama-Biden ticket on healthcare, health insurance and social services for people with disabilities. An excerpt:

Even though 90 percent of the 54 million Americans with disabilities are adults, Palin, John McCain, and the news media have talked almost exclusively about children. And that talk has been mostly about “compassion” not “issues.” The McCain-Palin campaign website has a single page on “Americans with Disabilities for McCain,” but it says nothing about policy positions. Other pages mention autism and disabled veterans but no other issues.

In contrast, Barack Obama and Joe Biden have said little on the campaign trail about disability issues but their campaign website provides detailed policy proposals in a comprehensive “Plan to Empower Americans with Disabilities.”

Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University. His “Open letter to the disability rights constituency” appeared exclusively on this site last month.

From the Boston Globe, Wall Street Journal:

Passed as part of the Wall Street bailout this week was a measure, hailed by mental health advocates as a “great civil rights victory,” that makes it illegal for health insurance companies to discriminate against patients with psychological or behavioral disorders.

The mental parity law, one of many amendments included in the legislation to broaden legislative support for the bailout package, requires health insurance companies to charge the same deductibles, copayments, and out-of-pocket expenses for mental health treatments as for all other illnesses.

… The nonprofit Mental Health America estimates that 67 percent of adults and 80 percent of children requiring mental health services do not receive help, in large part because of discriminatory insurance practices.

UPDATE: Bailout provides more mental health coverage — New York Times

From the New York Times:

Heba Said Ahmed (left) won a gold medal for power lifting at the recent Paralympic Games in Beijing, and broke a world record.

But when she left Beijing and returned home to Egypt, Ahmed once again faced a society that views her as a second-class citizen because she cannot walk, a disability caused by a childhood bout of polio. An excerpt:

“I want to prove to society that I am better than what they think of me,” she said. “In Egypt, they think a handicapped person should just stay in bed.”

It is hard to overstate how different Ms. Ahmed is from many of those around her. It is all about attitude. Egypt is filled with people who face adversity, most often a function of poverty and systemic indifference. It is a class-based society with an unwritten contract that many people believe condemns them to live as they were born, poor and marginalized. There is a pervasive feeling of impotence, a collective belief that fighting back is futile.

But Ms. Ahmed never refers to fate; she talks about choices. She does not talk about obstacles; she talks about challenges.

… “There is no such thing as a handicap,” she said. “A handicap is in your thinking, or in your heart.”