Expecting Longer Lives With Greater Risk, Reward

By Fredrick Kunkle
Washington Post Staff Writer
Monday, November 10, 2008

Like many people her age, Jennifer Holden wants to be on her own. But for the 20-year-old Springfield 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 résumé 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. "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 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."

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