A Welcome Home
Caregivers Take In Disabled Adults for One-on-One, Long-Term Help

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.

They had been out all day; Layla handed out lunches as part of her volunteer work at Meals on Wheels, under Jones's supervision. The next day, Layla helped stuff envelopes at a community center, with Jones later asking about the experience.

Wednesday was cooking class, and Layla ringed pizza dough with pepperoni and cheese before setting the table with three other participants in the day program.

"She is part of my life now," said Jones, who has taken Layla to homecomings in Guyana, her home country, weddings and all the other social activities that she and her husband do together. "And I see her being a part of it as long as I have health and strength."

Although the concept of sponsored placements has been used in other parts of the state and across the country, there has been a spike in Northern Virginia during the past two years.

Blue Ridge Residential Services, a Lynchburg-based company, has recruited 10 caregivers since 2006 and has 12 more ready to open their homes this fall, said Richard Gilman, the company's executive director. And there appear to be many more local residents interested: Applications to Blue Ridge have tripled since October, from 10 to 30.

State officials said that the increased interest in placements in Northern Virginia is largely a result of the shortage of group homes in the region. Escalating land, labor and other costs have prevented group homes from opening fast enough to meet the region's growing population and health-care needs, officials said.

As of July 1, there was a waiting list of nearly 1,000 for group home placements in Northern Virginia, several dozen of them considered urgent.

According to the Research and Training Center for Community Living at the University of Minnesota, there are about 37,000 such approved homes across the country, about 10 percent of the available community placements nationwide. As of July 1, 2007, there were 739 placements across Virginia, nearly twice as many as in 2000. There are about 216 people living in placements in Maryland and 68 in the District, according to the center.

"Anything we can do to relieve the pressure off of our waiting lists is a positive," said Lee Price, director of intellectual disability services for the state Department of Mental Health, Mental Retardation and Substance Abuse Services. "These aren't going to be for everybody, but for hard-to-place adults and those who have been on waiting lists for a number of months or years, it's an important alternative."

Some advocates for people with mental disabilities said that the placements provide good options but sometimes do not promote the kind of independence that clients need.

"I think there's some concern that they can be isolating," said Nancy Mercer, executive director of ARC of Northern Virginia, an advocacy group. "Many with intellectual disabilities thrive in group homes, where there's more consistent interaction with their peers, relationships that can really help them grow. So they are not for everybody."

In Northern Virginia, caregivers receive an average of $67,484 a year through Medicaid, the federal-state health-care system for the disabled and poor. Caregivers work an average of 92 hours a week, and the money is appropriated for them to work with their charges on skills to help them live more independently. Medicaid does not pay for overnight care. That cost is paid through Social Security, which also covers food, rent and other living necessities for the resident. The payments are usually managed by someone other than the caregiver.

The average annual cost of the service is nearly equal group home placement, which costs about $62,000. State officials said that added costs for sponsored placements are usually administrative, because such arrangements generally require more supervision from local agencies than group homes do. Similar services in state institutions average nearly $93,000 a year per person.

In some cases, caregivers hire home health aides or support staff to care for their residents, particularly if the sponsor works another job or is otherwise unable to perform certain duties. But in most cases, sponsors dedicate their lives to those in their care.

State law allows only two mentally disabled people to live in a home at one time. Agencies that supervise the arrangements make one or two visits to the homes a month.

In many cases, the arrangements develop between families, friends or longtime acquaintances. In some cases, caregivers who have worked with clients on a limited basis decide to deepen their relationship by opening their home.

"The relationships between people really are varied," said Kimberly Shepherd, director of operations for Blue Ridge Services. "We have all kinds of people who are looking for a change, who have extra space in their home and want to . . . provide this service for people."

Although use of the model has been increasing steadily in Northern Virginia, largely through Blue Ridge's aggressive efforts, experts said such arrangements will probably remain a small part of community services for people with mentally disabilities.

K. Charlie Lakin, director of the Research and Training Center for Community Living, said the demands on caregivers are sometimes prohibitive.

"The way many Americans live today, it's difficult for them to take on this huge responsibility," Lakin said. Such placements "will continue to be important, but I'm not sure how widespread they can become because of this responsibility."

Indeed, the relationships become very close and intensive. Jones often checks on Layla in the middle of the night to make sure she is resting comfortably. Jones usually is up at dawn when Layla, who rarely sleeps more than five hours, wakes up.

The two have become so close that Jones is able to keep Layla, who, like many with autism, is prone to loud outbursts, quiet during movies or when dining out, something her mother said she was never able to do.

Jones said it is a small example of the things Layla has been able to learn from their one-on-one relationship.

"I've promised the family that I will be here for their daughter for as long as I can physically do it," Jones said. "It's a promise I intend to keep."