Finding healthy living arrangements Association helps the disabled make it on their own


FOR THE FIRST time in his 55 years, Charles Davis is living on his own.

He has a small apartment decorated with his own artwork.

He has a job, a bank account and "new teeth."

And perhaps for the first time in his 55 years, he is making plans -- taking his neighbor out to dinner, learning to read, thinking about changing jobs.

Davis has mental retardation. Now he also has the support he needs to be independent, if not entirely self-sufficient.

Davis, who lives in Frederick, is one of more than 4,600 Maryland residents with developmental disabilities who are being helped to live more on their own through a system of coordinated services that meets individual needs. The service may be a job coach who helps a person with mental retardation find and learn a job; it may be someone to relieve the person's family; or it may be the installation of plumbing that allows a physically disabled man to stay in his own home.

In some cases, it is a list of resources available to families of people with disabilities or an indication of what to expect from school systems or a referral to a support group.

For Davis, the services were many -- securing benefits, arranging for a job at a sheltered workshop, finding him a home, teaching him how to use the bus system -- that led him out of his unhealthy living situation.

"He had hopped from relative to relative, just bounced from home to home," says Maria Harris, an individual support services coordinator for the Frederick County Association of Retarded Citizens. When Harris first met Davis by following up on a private referral, he was living with two brothers -- one mentally ill -- in a ramshackle house without plumbing outside Frederick.

He was walking a mile a day for water, had no way to get food and no obvious source of income, Harris says. But at that point he was not ready to move away from his brothers.

Then, one of Davis' brothers abruptly moved out and eviction was threatened. He began to see that he needed a new place to live. "He needed everything all at once," says Harris, who worked more than 50 hours a month to get Davis settled.

That was in August.

Now, "things are going very well. He's very pleased," adds Harris, who is spending less time with Davis these days.

"I like living by myself. I get to do things that I could not do before," Davis said during an interview in his three-room basement apartment.

"I do my own cooking. I do my own washing. I do my own grocery shopping. I bake cakes once in a while," says Davis, ticking off his recent accomplishments with pride. "I feel great about myself."

"Many of the people that we serve . . . get introduced to us because of a crisis," says Rosemary Rosensteel, support services director for the ARC in Frederick. "After a crisis is resolved, we look at the situation so that it does not happen again."

But services are not necessarily foisted upon people with mental retardation or their families. The impetus for much of what Harris has done for Davis, and for what service coordinators do around the state, "comes from the people we work with," says Harris. This represents a big change in caring for people who have mental retardation and other disabilities.

Since moving people out of institutions to live, work and go to school in the community, there also has been a change in the decision-making philosophy.

"There is a lot less trying to fit a person into something," be it a group home, a sheltered workshop job or a certain recreational activity. And there is a lot more trying to help a person meet his own needs, says Nancy Kirchner, services coordination director for a division of the Frederick County ARC, which, through state grants, provides a variety of support services to about 4,000 people with disabilities in Baltimore and 10 counties in central and western Maryland.

Other counties coordinate services for people with disabilities through their health departments.

About 75 percent of the people served have mental retardation; the rest have other disabilities, such as epilepsy, multiple sclerosis and cerebral palsy, she says.

The number of people served and the scope of the services are determined by community resources and the money available from the state's Developmental Disabilities Administration and other sources, says Kirchner.

(There are about 16,000 Maryland residents with developmental disabilities who are either receiving state-funded services or requesting them. Many other people with these disabilities are, however, cared for by their families and never request or receive services, so it is difficult to count them, says Michael Smull of the University of Maryland Department of Pediatrics, which has a contract with the state to provide services for the disabilities administration.)

Melvin Stouter definitely did not want to move out of the log cabin he helped his father build years ago. There was no indoor plumbing, however, and Stouter, who is totally disabled because of serious health problems, was being threatened with eviction from his home of more than 40 years.

The ARC, working with the housing department, arranged for and paid for plumbing. It also bought Stouter a phone and washing machine. In addition, Bonnie Stum, an individual support services coordinator, worked with Stouter to ensure he receives medical assistance and other benefits he is entitled to.

She has also helped Stouter learn to shop for and prepare healthy foods. Stouter is proud of the vegetable soup Stum taught him to make and often has a bowl waiting for her when she visits.

"We act as a broker for all these needs that had been unmet," nTC says Stum. "The services we provide are very appropriate. We're kind of just keeping things together."

Although the services provided to Davis and Stouter may be more extensive than those needed by many other clients, they are representative of what service coordination programs do for those with disabilities.

For Preston Perkins, the service coordination office in Baltimore is providing dental care, which is not included in his medical assistance benefits. Perkins, 33, works at a fast-food restaurant and lives in a Towson town house with a counselor and two other men with disabilities.

The house, known as an alternative living unit, is operated by the Baltimore Association for Retarded Citizens, which employs the counselor and provides Perkins with a job coach.

The dental care, bi-monthly visits from a service coordinator and access to a support group operated by the Baltimore office of service coordination fill in some of the gaps in Perkins' everyday life.

A service coordinator "serves as a safeguard . . . to see what people are receiving and whether it is what was promised," says Smull. Service coordinators also help people with disabilities meet their needs through community resources rather than through state-funded programs, which are already strapped for money. It is part of a service coordinator's job, Smull says, to see that people with disabilities have the same access to community resources as anyone else.

Each person involved in service coordination meets once a year with all the people involved in care. Together, they map out goals -- a better place to live, a training program, new friends -- and ways the person with the disabilities can meet those goals.

The service coordinators look at a person's strengths, achievements and desires, and try not to impose goals or solutions, says Kirchner. "We really try to avoid saying professionals know best because we don't walk in other people's shoes. We're not the ones to make the decisions."

The professionals' goals for the people they serve, says Kirchner, are independence and integration into the community. "The best thing we could do is advise ourselves out of a job."

That's the way Maria Harris views her role in Charles Davis' life, too.

"The goal for Charles . . . is to one day live on his

own and not take money from anybody," says Harris. "In a year, he's not going to need to rely on the social systems that are out there. One day he won't need me at all."

Services for independent living

The Association for Retarded Citizens (ARC) offers day programs, residency programs and vocational support. For information about service coordinations and who is eligible, contact Nancy Kirchner at the Service Coordination Office, 711 W. 40th St., Suite 429, Baltimore 21211; phone 235-8110 in Baltimore City. For ARC services in other areas, call:

* Baltimore County, 882-4710

* Carroll County, 848-4124

* Anne Arundel County, 766-2882

* Harford County, 893-0393

* Howard County, 995-0161

* Frederick County, 663-0909.

For information about services offered by the state's Developmental Disabilities Administration, call (301) 328-2140.

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