The Wall Street Journal
When Crisis Hits the Disabled
Limited Options for Support and Housing Exist for Aging Caregivers and Their Children
By CLARE ANSBERRY
April 29, 2008; Page A8
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An estimated 2.9 million people with intellectual or developmental disabilities or some significant functional limitation live with caregivers -- mainly parents -- who are 55 years or older. As they age beyond their caregiving capacities, their children need a formal and supported living arrangement. Unfortunately, there aren't enough of those arrangements. About 80,000 people with developmental disabilities nationwide are on waiting lists for various services to help them live in the community. Texas, alone, has about 35,000 people waiting for home and community services, in spite of funding last year to serve additional people. Spending for such programs continues to increase annually, although levels vary by state. It reached $2 billion last year, which represented a 10% increase, says Charlie Lakin, who researches residential programs at the University of Minnesota. "But the reality is, it's not growing enough to meet the demand." Moreover, options may narrow further as budget-strapped states try to hold down spending and the federal government looks for ways to control spending for Medicaid -- the main source of funding such programs -- the concern is that options will further narrow.
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Seventy-nine year old Anna Dromgoole arrived at the Plano Specialty Hospital a month ago with severe wounds on her legs. Her 41-year-old son, Kent, who has Downs Syndrome, was at her side. Ms. Dromgoole refused to be admitted unless Mr. Dromgoole could stay with her. She, like thousands of other aging caregivers across the country, had no place for her developmentally disabled child to go. When crisis hits, they find themselves at the mercy of strangers. In their case, the stranger was Beth Lambdin, Plano Specialty's clinical liaison, who found a semi private room for the Dromgooles, thinking they would be back home in a few weeks.
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That first week, when both mother and son were at the hospital, Ms. Lambdin tried to keep Mr. Dromgoole, a likeable outgoing man, engaged. She brought him coloring books and paints and took him to Firehouse Subs, where he ordered an oversized sandwich dubbed the "Wreck." "He's verbal and independent. He just can't live alone," she says. "He was never taught those life skills." When his mother's condition worsened, Ms. Lambdin realized that the short term stay she envisioned wasn't going to happen and that Mr. Dromgoole might not be able to return home... Various social service agencies offered untenable solutions. One said Mr. Dromgoole could get emergency help if he was left at a homeless shelter. Groups that work with the developmentally disabled had an opening in a supervised residential program nine hours away in San Antonio, but nothing closer. Ms. Lambdin doesn't want to move him that far from his mother.
She called her friend, Travis Fogle, at Silverado Senior Living, a well-regarded private pay home for those with Alzheimer's and dementia. Silverado, she knew, would take people for three days in an emergency situation. Mr. Fogle extended that stay for a week and a half, at no cost. Mr. Dromgoole flourished there, putting vases with daisies and carnations on dining room tables, and helping to feed residents, who couldn't feed themselves. He went ballroom dancing, to his first hockey game and saw an Elvis impersonator. Staff trimmed his dark hair and cut his long nails, washed his clothes and his mother's, too. Mr. Dromgoole requested and received simple meals he was accustomed to -- corndogs, macaroni and cheese and skillet fried potatoes and onions. "We just wanted it to be a positive experience for him," says Mr. Fogle. It was, but it was also unsustainable. It would cost more than $80,000 a year for him to live there and Mr. Dromgoole receives only $1,200 a month in Social Security. "They did as much as they could," says Ms. Lambdin. Some Silverado families are trying to raise money for him to return.
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Ms. Lambdin continues to search for an appropriate local residence for Kent. If nothing materializes, she will bring Mr. Dromgoole home to live with her husband and three young daughters, ages 11, 9 and 5. The stairs on their split-level home would be hard for Kent, who weighs about 260 pounds, but not impossible. "I've got feelers out everywhere," says Ms. Lambdin. "Unless by some miracle, someone comes in and says they have him covered, he'll come home with me."
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