Down syndrome generation first to outlive parents

Barriers remain to independent living

Jennifer Holden, 20, who learns independent living skills at George Mason University, got a hug from Vincent Roubin. Jennifer Holden, 20, who learns independent living skills at George Mason University, got a hug from Vincent Roubin. (Susan biddle/washington post)
By Fredrick Kunkle
Washington Post / November 12, 2008
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WASHINGTON - Like many people her age, Jennifer Holden wants to be on her own. But for the 20-year-old Springfield, Va., woman, crossing streets can be frightening. Keeping track of money is difficult. And fending for herself is challenging at times for a person who loves to read but has difficulty with novels above a fifth-grade level.

"A stranger could set a trap on me," she says between bites of a cheeseburger at a Wendy's. "Kidnap me."

Holden belongs to the first generation of people with Down syndrome who will probably outlive their parents. The life expectancy of people with Down syndrome has increased from about 25 years in 1983 to more than 50, thanks largely to medical advances. Although achieving independence has long been the goal for any person with a disability, increased life expectancy has made the goal more urgent now that the baby boomer generation is graying.

"It's a big question we all ask," said Gail Williamson, 55, executive director of the Down Syndrome Association of Los Angeles. Williamson's 29-year-old son, Blair, has Down syndrome and a resume that many actors in Hollywood would envy, including performances on television dramas including "CSI," "Nip/Tuck" and "ER." But he also participates in a supported-living day program and will probably need similar guidance when he is totally on his own, she said.

Estate planning is tricky, as families have to create special trusts to ensure that their children will be provided for without jeopardizing their eligibility for Medicaid and other programs. Openings in group homes and supervisory programs are hard to find. Deciding whether to make a sibling a guardian can be difficult.

"It's a huge problem, and it's not just a problem involving Down syndrome but for all people who have an intellectual disability," said Peter V. Berns, executive director of the Arc of the United States, whose headquarters is in Silver Spring, Md. "There's a serious crisis brewing. There are actually huge waiting lists for services across the United States."

In 2006, 61 percent of people with an intellectual disability were living with their families, and more than 700,000 of them were living with parents or family members who were older than 60, Berns said.

"The reality is that the services are not available to take care of these people in the event that their family member either becomes sick or passes away," Berns said. "In a sense, their very freedom is at stake."

Anita Mahood of Leesburg, Va., said she and her husband encountered many difficulties, including waiting lists for group homes and other programs, before finding their 34-year-old son, Bill, a subsidized apartment to share with another man who also has an intellectual disability. Mahood's son is enrolled in Community Systems, a supervisory program whose staff drops by her son's apartment to check on him, and a group called Every Citizen Has Opportunities, which provides job training and placement for people with disabilities.

"This is the first generation of children who will outlive their parents," Mahood said. "That's why we worked so hard to find a solution for Bill."

Mahood, 69, said she and her husband have set up a special-needs trust that will provide support for their son after they die. Although her daughter and son-in-law offered to take Bill in, Mahood said she decided that she did not want them to accept primary responsibility.

"I don't feel it's the right way to go," Mahood said. "Both need to have their own lives. I feel very strongly about that."

The LIFE Program that Holden attends at George Mason University's Helen A. Kellar Center for Human disAbilities is in its sixth year. Tuition is not cheap: $16,500 a year for a non-degree program.

But it also offers a shot at independence.

"With each stage, as with a non-disabled child, you're giving them a little freedom and watching to see if they can handle it," said Jeanne Holden, Jennifer's mother. She knows that her daughter might not realize her dream of becoming a professional teacher and that she probably will be unable to live by herself without support. But her daughter also surprises.

"More often than not, they rise to the occasion," Jeanne Holden said. "Sometimes you've got to take a deep breath."

Jennifer Holden loves movies and musicals, especially "The Three Musketeers" with Charlie Sheen and "High School Musical." She often goes to the movies with friends. She also has been serving as an assistant religion instructor for young children at her synagogue in Alexandria, Va., and this summer worked as an assistant counselor in a Fairfax County recreation program. Last year, she spent a week living in a GMU dorm, preparing microwaved meals and navigating the campus. She loved it.

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