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Disabled budget soaring

THE BALTIMORE SUN

Lorraine Shaughnessy worries that she won't be able to take care of her mentally retarded brother for too much longer.

Her husband has just been diagnosed with cancer. Her parents in Florida are 86 and ailing. And she finds herself low on time and energy for her 57-year-old brother, who shares the Shaughnessys' Rockville home.

"When you stop to think about it, it's a very fragile existence the three of us have, my husband, brother and me," she said.

Her family is one of several thousand across Maryland waiting for government-funded housing or services for adult relatives with developmental disabilities -- mental retardation, brain damage, cerebral palsy, autism or multiple sclerosis.

Maryland is fighting a losing battle to keep up with the demands of a growing population of disabled adults. The state is spending twice as much on services as it did just eight years ago, yet the number waiting for help continues to rise.

In fact, the proposed $321 million budget of the state Developmental Disabilities Administration is approaching the level of the budget for welfare.

"I'm very concerned about it," said the governor's deputy budget secretary, Frederick W. Puddester. "This will remain one of the handful of programs we're going to have to watch [because] it has the potential to grow faster than revenues."

The reasons for growth are not unique to Maryland. People with disabilities are living longer than before. In addition, society has higher expectations for them than it did decades ago, when mentally retarded people were hidden in state institutions and -- denied educational and other services, advocates say.

"The profoundly handicapped are living longer as medical scienceprogresses, and they are learning many more skills," said Del. Henry B. Heller, a Montgomery County Democrat and retired special education administrator.

People with developmental disabilities are outliving their parents more routinely. As a result, more families are trying to make arrangements in advance.

Mrs. Shaughnessy took her brother into her home six years ago when her elderly parents could no longer care for him.

"What I'm looking for is a place for him to live, like a group home, where he has some supervision. He needs some help with daily living," she said. For example, her brother cannot plan and cook meals, although he does hold down a job at a hotel laundry.

Her brother was recently offered a nonsubsidized place in a Montgomery County group home, but it would cost $34,000 a year. "We don't have it," Mrs. Shaughnessy said.

The state estimates that 7,300 Marylanders are awaiting government-funded services, ranging from housing to job help to day programs. (State officials and advocates for the disabled say the true number may be less because some people may have been counted twice.)

More than 1,800 people are in "crisis," which means their situation could turn into an emergency if an elderly or ailing caretaker dies. Almost 150 people with mental retardation are homeless, according to The Arc of Montgomery County, an advocacy group.

Betty Roles of Silver Spring said she hopes the state will be able to find permanent housing for her disabled adult daughter and son while they're still young and better able to adapt to leaving home.

Her 31-year-old daughter is working and living temporarily in a group home, while her 29-year-old son lives at home. Her son "needs much more care" because he cannot communicate or take care of personal needs, she said.

She is frustrated by the long wait. "We've kept them all their lives, and we haven't asked the state for anything, except their education. We're all getting older, and our health is going, and we're still not served," she said.

So how should Maryland come up with enough money to serve everyone? The question is more than a little controversial.

The Schaefer administration in 1989 proposed charging parents for some services for their children. The idea was hooted down as being unfair and heartless. "No one else in the nation [charged parents]. It's unconscionable," Delegate Heller said.

Some advocates for the disabled say the state should move faster to close costly institutions, while increasing the number of less expensive group homes in communities.

The state pays half as much for a bed in a privately run group home as it does for a bed in its two largest institutions. Only 830, or 7 percent, of the 12,600 Marylanders receiving some form of state service live in institutions, but they use 27 percent of the budget.

But advocates say that cost savings are secondary to the main reason for supporting community living: civil rights.

Cristine Marchand, executive director of The Arc of Maryland, formerly the Association for Retarded Citizens, said people with disabilities have a right to live in the least restrictive setting. "The more surrounded you are by family or a family-type atmosphere, the better you do."

A 32-year-old woman who moved from Rosewood, a state institution, to a group home or "alternative living unit" agrees. Wendy Grimes, who has multiple disabilities, said she is quite happy with her move to a modest ranch house in Edgewater, a quiet waterside community south of Annapolis. She shares the tidy home with a caretaker and two other women who once lived in the century-old Rosewood in Owings Mills.

The move for the three former Rosewood residents was part of a nationwide effort to get people out of institutions and into communities during the past two decades.

State health secretary Nelson J. Sabatini said his department is doing its best to empty institutions, while being sensitive to people who want to stay in them.

"We're rapidly reaching a point where, for a significant portion of the people residing in institutions, moving them outside the institutions would result in opposition from their families. They don't want them in a group home," he said.

Some families believe an institution is better equipped to handle medical needs, he said. Other families see no reason to move relatives out of a place they consider home.

The debate over institutions and community living will continue, probably for many years.

Meanwhile, the budget for the Developmental Disabilities Administration will be determined by state legislators in coming weeks.

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