September 8, 2008

A Spotlight for Special Needs

By John Fritze

Families with children who have Down syndrome are hoping Republican vice presidential nominee Sarah Palin can raise awareness about the condition and boost efforts to help people with disabilities live more independently.

Palin's infant son, Trig, has Down syndrome. "A lot of parents are advocating, but we've had too few advocates in elected office," said David Tolleson, executive director of the National Down Syndrome Congress in Atlanta. "Having a high-profile person in place does bring attention."

One in every 733 babies are born with Down syndrome in the USA, making it the most commonly occurring genetic disorder, according to the National Down Syndrome Society in New York. More than 350,000 people live with the condition.

Disability groups cite a long list of priorities, from additional funding for physical therapy after birth to long-term financial incentives to help people with Down syndrome pay housing and medical bills into adulthood.

Education is a top concern. Disability groups have supported strengthening the No Child Left Behind law because, they say, it forces schools to put more emphasis on special education.

Children with disabilities "are supposed to have access to the same curriculum as the non-disabled kids," said Susan Goodman, director of government affairs for the National Down Syndrome Congress.

Tony Bisignano lives in Omaha with his 6-year-old son, Ryan, who has Down syndrome. Bisignano said Ryan's school strikes a good balance between integration and extra attention but said the same approach must be adopted uniformly elsewhere.

"I don't want Ryan to live with me for the rest of my life," Bisignano said. "Given the right tools, he's going to be able to give back to society. You want your child to be someone who gives back."

Bisignano and advocacy groups say Medicaid eligibility requirements, especially a federal $2,000 cap on assets, encourage the disabled to make less money so they qualify for federal assistance.

"We think that this is really holding back so many of our young people who really want to work and want to work at more than just a part-time job," said Madeleine Will, vice president of public policy for the National Down Syndrome Society.

In addition to education and lifting eligibility caps, Will said advocates want Congress to make other 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. The setup would be similar to retirement accounts, Will said.

Palin, Alaska's governor, discovered that Trig had Down syndrome in December, about four months before she gave birth to him.

At last week's Republican National Convention, Palin told delegates: "To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

"I pledge to you that if we are elected, you will have a friend and advocate in the White House," she said.

What that means in terms of policy is unclear. The campaign said special education funding increased in Alaska under Palin, though some money for the general special-needs population was shifted to "intensive needs students," including children with multiple disabilities.

"Gov. Palin has a strong record working on behalf of families with children who have special needs," campaign spokeswoman Maria Comella said.

For now, Deirdre Featherstone, whose 9-year-old daughter, Catherine Emer Madden, has Down syndrome, is undecided on the election. Catherine received early attention from physical therapists and attends a fourth-grade class in New York that includes disabled and non-disabled children.

"People should be able to go to school in their neighborhood and be included," Featherstone said. "For me, a child with Down syndrome is the greatest gift I could ever receive." (c) Copyright 2008 USA TODAY, a division of Gannett Co. Inc. <>