Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for March, 2008

Column: Women get skewed data about Down syndrome

Monday, March 31st, 2008

Writing on firstthings.com, Amy Julia Becker reflects on the recommendation by the American College of Obstetricians and Gynecologists that all pregnant women be offered prenatal screening for Down syndrome. This standard of care results in termination in at least 85 percent of diagnoses, Becker writes, and will likely result in the elimination of people like her cherished daughter Penny from our society. Becker thinks that many terminations are based on “probabilities, fear and misinformation.”

In the case of Down syndrome, many women receive incomplete data about what it means to live with an extra twenty-first chromosome, much like the list we received in the hospital after Penny was born. I wish that “evidence-based standards of care” included the fact that the life expectancy of people with Down syndrome has doubled in the past twenty-five years, or that the average IQ of a person with Down syndrome has doubled over the course of the twentieth century, or that many physical “defects” can be corrected relatively easily because of advances in medical care.

… I also wish that “evidence-based standards of care” included evidence of the potential for children like Penny. I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.

I will follow my doctor’s orders and have a Level Two ultrasound next week. I will hope and pray that this baby’s heart and lungs and brain and limbs look healthy and whole. And I will try to remember the fear and shock I felt when the words “Down syndrome” first became a part of our reality, and have compassion for every person who has trouble understanding the blessing Penny is to our family. And yet I will also hope and pray that physicians advising women and families who are frightened and uncertain and faced with life-changing decisions will offer those women a true choice, an informed choice, a choice based on the evidence that all of life is fragile and uncertain, with potential for heartbreak and potential for great joy.

Amy Julia Becker is a student at Princeton Theological Seminary.

Op-ed: Protect aid for those living with disabilities

Monday, March 31st, 2008

From the Dallas News:

Clay Boatright, who serves on the board of the Arc of Dallas and the Arc of Texas, says he fears that federal budget tightening will reduce services for people with disabilities and prevent them from reaching their fullest potential.

Among the problems he sees:

– A plan to prohibit school systems from billing Medicaid for administrative services;

– A plan for major reductions or elimination of services in vocational rehabilitation and training; and

– A plan to drastically reduce funding for caseworkers who help people move out of state institutions into the community.

Boatright backs the ADA Restoration Act, along with a bill that requires medical schools to teach doctors about disability, and another that will help the states increase wages for direct support workers.

Just as people’s value should not be based on their sex or the color of their skin, nor should it be based on a disability.

Transition center helps students develop their talents

Monday, March 31st, 2008

From the New York Times, a feature on the Center for Transition Planning, in its second year at Mamaroneck, New York, High School. The center helps students with special needs to develop skills that will help them lead purposeful lives when they leave school.

This year’s goal was to help students draw on personal interests to make money. Some started their own businesses under the guidance of job coaches, while others found jobs in the community.

“I view my job as linking them to their happiness – trying first to help them find it and then linking them to their community to make things happen,” said Mara McGowan, a special education teacher who developed and oversees the program.

Op-ed: ADA restoration is crucial

Monday, March 31st, 2008

‘Now is the time to act to protect the disabled’

From the Chicago Tribune:

Lynne Landsberg, a rabbi who sustained a traumatic brain injury in a car accident, urges speedy action on the ADA Restoration Act of 2007. It is needed to close loopholes in the ADA and ensure the comprehensive civil rights protections the 1990 bill was meant to provide, she writes.

Before my brain injury, I belonged to one minority that was strong and articulate – the American Jewish community. Now, I belong to a second minority that is daily the victim of discrimination yet remains powerless and barely heard – people with disabilities.

… Even with résumés that indicate they are qualified for the job, [people with disabilities] must convince employers that the discomfort disability engenders will not impede their work ethic.

Unfortunately, thousands of Americans face unconscionable acts of disability-related discrimination in the workplace every day.

… We must encourage Congress to recognize that people with disabilities are human beings with full civil rights who want to work, support their families and live their lives.

More on Lynne Landsberg from Washington Jewish Week.

Op-ed: Poling autism decision was harmful to public health

Monday, March 31st, 2008

Lower evidence standard is blamed

Paul A. Offit, writing on the op-ed page of the New York Times, says the Hannah Poling decision relied on a relaxed standard of evidence, in which her parents needed only to propose a biologically plausible mechanism by which a vaccine might have harmed her. Earlier cases before the vaccine court were required to meet a higher standard: a preponderance of scientific evidence.

Without holding a hearing on the matter, the court conceded that the [Polings'] claim was biologically plausible. On its face, the expert’s opinion makes no sense.

… The vaccine court should return to the preponderance-of-evidence standard. But much damage has already been done by the Poling decision. Parents may now worry about vaccinating their children, more autism research money may be steered toward vaccines and away from more promising leads and, if similar awards are made in state courts, pharmaceutical companies may abandon vaccines for American children. In the name of trying to help children with autism, the Poling decision has only hurt them.

Paul A. Offit, chief of the infectious diseases division of the Children’s Hospital of Philadelphia, is the author of “Vaccinated: One Man’s Quest to Defeat the World’s Deadliest Diseases.”

‘High School Musical’ production promotes inclusion

Monday, March 31st, 2008

From the Chicago Daily Herald:

An upcoming Chicago-area production of Disney’s “High School Musical” will feature 25 people with Down syndrome among the 40-member cast.

While the original movie aims to break down social stereotypes and cliques, this presentation tackles breaking down perceptions of people with disabilities.

The idea is one that has drawn great interest. Its four shows sold out in one week, nearly a month before its opening performance on April 11.

“Our goal is one of integration,” says the play’s director. “We want people of all abilities working alongside each other.”

The concept starts at the top, with Nick Lamore, 13, of Streamwood playing Troy opposite Moira Morgan of Chicago, who plays Gabrielle, and has Down syndrome.

Girl with cerebral palsy captures prestigious writing prize

Sunday, March 30th, 2008

Jemma Leech wrote her way past 1,600 other children to win essay contest

From the Houston Chronicle:

”I am Jemma and I am immortal!”

Thus begins the one-page autobiography of Houston fifth-grader Jemma Leech who, though cerebral palsy has left her little control of her body, lives in a vivid world of images and words that modern technology now is beginning to let her share.

… In darker moments, Jemma writes about how others perceive her.

” ‘How can you,’ they say in hushed tones, ‘read, write and think like normal people do?’ ” she writes. ” ‘Surely that mother of yours is just making it up and should stop telling fibs.’ Well, d’you know? I do have a brain and I do have a mind – and the imagination of Dahl, the poetry of Keats, the drama of Shakespeare, the music of Verdi and the passion of them all in one.”

Her autobiography is here.

Here’s an earlier story on Jemma from the [UK] Times — Young, gifted and helpless: She is trapped in a body that doesn’t work. So how do you unlock her mind?

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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