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Taking the next step

As the developmentally disabled live longer, their aging parents face a new dilemma.

May 05, 2003|Melissa Healy | Times Staff Writer

On her 40th birthday last June, Martha Billington moved out of the tidy shingled house that she grew up in in Melrose, Mass. As friends and family helped load her belongings onto a rented truck, Martha climbed into the cab and beeped the horn in happy celebration.

Martha Billington, born with Down syndrome in 1962, was leaving the nest.

A year later, with Martha living in a group home, working a full-time job and happy in her new life, her 80-year-old mother, Norma, is preparing to sell the family home. After raising three boys and Martha -- "my joyous little girl," with the round face and shy smile -- "the time is right," she says, to make her own move to a smaller place.

Her work is done.

In numbers and ways never seen before, stories like the Billingtons' are playing themselves out in communities across the nation. A generation of parents who have cared for their developmentally disabled children at home now face their own old age and the prospect that their children -- grown now, but still needing constant care and support -- will outlive them. Many have never asked for help from the government, but need it now, when the system built to help this special population is already creaking under the strain.

For The Record
Los Angeles Times Wednesday May 28, 2003 Home Edition Main News Part A Page 2 National Desk 1 inches; 35 words Type of Material: Correction
Education Act-- A May 5 Health article on the developmentally disabled incorrectly reported that Public Law 94-142, the Education for All Handicapped Children Act, was passed in 1994. The act was adopted in November 1975.
For The Record
Los Angeles Times Monday June 02, 2003 Home Edition Health Part F Page 8 Features Desk 1 inches; 35 words Type of Material: Correction
Education act -- A May 5 story on the developmentally disabled incorrectly reported that Public Law 94-142, the Education for All Handicapped Children Act, was passed in 1994. The act was adopted in November 1975.

What is new is not only the size of this aging population of caregivers; it is that their children are outliving them at all -- a testament to improved health care and lengthening life spans among the 4.3 million Americans with mental retardation.

By the best estimates, there are about 673,000 individuals with developmental disabilities nationwide -- in California, roughly 69,000 -- who are cared for at home by a family member over age 60. Many remain unknown to state and county offices responsible for their support because these parents, until their health begins to fail, are quietly doing the job themselves. And their numbers are expected to accelerate greatly in the coming years as a generation of aging baby boomers, who lobbied for and won extensive government services for their disabled children in the 1970s, will start turning to the states in droves for help.

"We're just beginning to see the magnitude of the problem," says David Braddock, a University of Colorado psychiatry professor who tracks the population of developmentally disabled Americans. The system of group homes and residential supports that states have built to assist adults with mental retardation will have to double in size in the next two to three decades if it is to keep up with the demand, Braddock says. And under current federal and state law, states must keep up with demand or face lawsuits.

For parents like Norma Billington, who defied her doctor's advice and cared for her daughter at home for four decades, Martha's transfer from home care to a state-owned, county-run group house marks a poignant moment of closure. "I think I've done everything I can to have Martha prepared for life without me," Norma reflected recently. "She's experienced death and knows what it's about. Maybe it'll be a little harder on her than the average person, but she'll be all right."

But for many other parents with developmentally disabled sons or daughters, the recognition that a change must be made in the caregiving arrangement brings fear and uncertainty. Across the country, the numbers of state-owned group houses like Martha's lag far behind the numbers of people with disabilities who want them.

So many aging caregivers of now-grown children with mental retardation have nowhere to turn. Siblings frequently step in, but far-flung families and a patchwork of differing state programs often make the transfer to a sibling's household a painful adjustment for the family member with mental retardation.

Many aging caregivers face a wrenching dilemma: whether to continue living independently with the help of their developmentally disabled adult child, or to provide for the future by transitioning the child to state care.

For decades, says Brandeis University professor Marty Krauss, these parents "felt they were the final protectors of their child's quality of life; that no one would protect their child the way they would, and they would accept nothing less." But often as these lifelong caregivers grow old, adds Krauss, "it's a very reciprocal relationship."

Starting in 1988, Krauss and Marsha Seltzer of the University of Wisconsin tracked 471 families in Massachusetts and Wisconsin in which parents nearing or in their 60s continued to care at home for a developmentally disabled child. Over the course of a decade, they found that the family member with mental retardation acquired more new skills and made a smoother transition when aging parents were active in their child's transition to care outside their home.

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