A Welcome Home

By Chris L. Jenkins
Washington Post Staff Writer
Sunday, August 10, 2008

When Leila McDowell-Head thought about the future of her mentally disabled daughter, Layla, she kept coming up with unsavory scenarios. She and her husband, Tony, were both in their 50s and knew their ability to care for Layla, 24, would wane in coming years. Who would be there for her? There were group homes, but would they be able to give Layla, whose condition is complicated by autism and frequent seizures, the specialized attention she needed?

So in November 2006, she decided to try an approach that is gaining popularity: She placed her daughter in the home of a licensed caregiver who agreed to look after Layla's needs around the clock -- someone who would take on the duties of nurse, cook, teacher, personal trainer and chaperon.

And although nothing is guaranteed, the arrangement with Sterling caregiver Sharon Adams Jones is for as long as all involved think it is the best place for the energetic Layla, who has the mental capacity of a 3-year-old and loves Alicia Keys and action movies.

"It was to the point where we didn't know what was going to happen to her," McDowell-Head, 55, said recently. "Here, there is someone I trust, who I know, who I've selected and who is committed . . . that gives us hope that Layla's future can be good."

Such arrangements, which are relatively new in the treatment of mentally disabled adults in Northern Virginia but are gaining popularity here and across the country. Called sponsored placements, they are akin to foster care for adults. Carefully screened and qualified caregivers, employed by a private agency, open their homes to disabled adults for temporary spells or long stretches, sometimes five, six or more years.

The placements are designed to offer an alternative to traditional group homes for adults with complex cases of Down syndrome, cerebral palsy or other mental disabilities, particularly when they are mixed with autism and epilepsy.

The placements allow families who are on years-long waiting lists for group homes to keep their adult children close and avoid having to send them to group homes far away. The arrangements cost about the same as group-home living and are much less expensive than institutionalization.

This approach to care for people with mental disabilities is seen by many national experts as a way of improving living conditions and care for this vulnerable population, particularly as states continue their move toward abolishing large institutions, many of which, advocates say, simply warehouse residents.

The relationship between caregivers, also called sponsors, and their charges is far from simple babysitting. Caregivers are expected to teach living skills that have been developed by a client's caseworkers and family. In Layla's case, Jones is responsible for teaching her how to communicate her feelings and structure her daily activities. Jones also cultivates other skills that might help Layla live a more independent life.

On a recent evening, Layla and Jones, 41, were ending the day at the dinner table, talking about the coming week.

"Cooking? Cooking?" Layla asked as she munched on takeout pasta and veggies in the family's kitchen, where safety guides and a chart of Layla's activities hung on a wall.

"That's Wednesday. We do that Wednesday," Jones said gently.


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