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For mentally disabled, longer life poses problems Families worry about care once parents are gone


Viona Williams doesn't like to complain. It's just that things can go wrong. She has problems with her colon. Her thyroid acts up. Arthritis grips her arms and legs.

But her biggest worry is her boy. At 42, Tyrone has the impish, open smile of a youngster. He has the loping gait of an adolescent, the life experiences of a middle-aged man and, when frustrated, the emotional responses of a young child.

"I am over 60, and I worry about him being out in the streets," said Mrs. Williams, a retired desk supervisor at the Enoch Pratt Library. "I worry because I don't know how long I will be here and how will he be taken care of if something happens to me."

Tyrone is mentally retarded. He is among the hundreds of middle-aged and older developmentally disabled Marylanders who will need a new home in the near future.

Thanks to improved medical care and better living conditions, men and women with Down's syndrome, cerebral palsy, mental retardation and dozens of other types of developmental disabilities are living longer than they did a few decades ago.

But the blessings of longevity present a challenge to public policy makers. In just a few years, the already strained state social service system will be stretched beyond capacity.

Many older adults, who have not received social services because they lived at home, will need residential care. Others, who had been helped by the state to live on their own or in group situations, will need more intensive care.

It's a problem that reverberates nationwide.

"We are at pre-crisis right now," said Dr. Edward F. Ansello, director of the Virginia Center on Aging in Richmond. "People with lifelong disabilities who might have died in mid-life are now surviving to older years in unprecedented numbers, and we don't have any public policy to deal with [the problem]."

Dr. Ansello, formerly associate director for the Center on Aging at the University of Maryland, notes Maryland was one of the first states to try to tackle the problem.

Since 1986, the state's Developmental Disabilities Administration has employed a specialist to develop and coordinate services for this growing population.

But earlier this month, Nelson J. Sabatini, director of the Maryland Department of Health and Mental Hygiene, warned of an imminent crisis. He said state programs, ranging from job training to residential care, currently aid 12,000 developmentally disabled people. Another 6,500 are on a waiting list for services and, of these, 1,400 are in a crisis situation. The crisis becomes an emergency, as 300 cases are expected to do this year, when a parent or guardian dies or becomes unable to care for the child.

Mr. Sabatini said the state budget could provide for only 80 emergencies.

"We are seeing a much greater demand for services," Mr. Sabatini said. "We are talking about people with some very serious problems, with some very serious critical needs. Are we going to say we have an obligation to meet their needs, but we're unable to come up with the money to do so?"

One of the most formidable issues facing health-care professionals is the large number of people whose needs must be met. Dr. Ansello estimates 7,000 of the state's 700,000 older ++ adults (people over the age of 60) are developmentally disabled. Of these 7,000, he says 60 percent -- or 4,200 -- are either unknown to the health-care system or known and not receiving help.

But Iris Gordon, the state's specialist on aging and developmental disabilities, doubts the numbers are that high.

"I would say it's more like 40 percent who are unknown and unserved," Ms. Gordon said. "In 1990 we had less than 800 developmentally disabled older adults who were receiving services. If there are 7,000, why haven't we heard from them?"

One reason may be shame.

Dr. Ruth Roberts, co-director of the consortium on Aging and Developmental Disabilities in Akron, Ohio, said that before 1976 -- when federal law mandated the education of handicapped children -- most developmentally disabled children were excluded from public schools.

"Many parents were so traumatized they decided to keep the kids home and out of sight," said Dr. Roberts. "We don't have numbers because they haven't been connected to any programs."

Reaching these families requires imagination -- and some subterfuge.

"The Jewish Community Center announced a program for families with members with lifelong dependency needs -- they didn't say mental retardation," said Dr. Roberts, describing an innovative program in her area. "They said they would have a lawyer, a doctor and a social worker present, and some 60 families showed up.

"These families were unknown to the system. There was a real reluctance among many of them to have anything to do with a system which they feel failed them. But they were equally reluctant to face their own mortality. Many of them didn't even have wills. It's a real problem."

Ironically, the problem results, inpart, from health-care advances.

"Twenty years ago, families didn't see children with developmental disabilities survive beyond them," said Dr. Matthew Janicki, director of aging services and special populations for the New York State Office of Mental Retardation and Developmental Disabilities. "People with Down's syndrome used to have a life expectancy of mid-teens to 30s. Now they live to their 40s and 50s. That's a result of better health care, nutrition and living environment."

The Chimes, a Baltimore-based, private, non-sectarian, not-for-profit agency dedicated to helping mentally retarded people, is one of the few regional organizations to respond to the challenge of increased longevity.

Last month, the organization dedicated Curtis Hall -- the state's first residence for senior citizens with developmental disabilities. The airy, dorm-like residence can house 31 people; most are already in place. Many of the residents were in other Chimes programs -- living either on their own or group homes. They decided they wanted more supervision. Other have come from Rosewood, the state institution for the mentally retarded. This group was chosen because members could survive in a less restrictive situation.

Only one current resident is from the community.

She is a 59-year-old woman whose mother, a cancer patient, was anxious to see her child placed in residential care. But the daughter, a heavy-set woman with a gray ponytail, is homesick. She repeatedly asks for her mother and tells the staff she has tears in her eyes.

Terry Perl, executive director of The Chimes, said the homesickness will pass. He said a terrible dilemma faces aging parents of retarded children.

"There is a tremendous fear that 'When I die, will my child wind up someplace terrible?'" he explained. "These parents worked all their lives to keep their families at home and they are now faced with putting their child in an environment totally undesirable to them."

Viona Williams understands that dilemma. She rues the time Tyrone spent in Rosewood.

"In 17 years, Rosewood didn't do anything he could learn," she said. "I felt he shouldn't stay in Rosewood because I saw no improvement in him. I thought when he got out we could get him in a program which could help him better."

Tyrone left Rosewood in 1980 and for three years he lived quietly at home. But in 1983, Mrs. Williams said, Tyrone began having uncontrollable outbursts that forced her to send him to the hospital to calm down. Afterward, she tried placing him in foster care but the situations weren't right for him.

When his last placement failed, she could either take him back or put him on the streets.

Mrs. Williams said that in recent years Tyrone's tantrums have tapered off. She said he likes to walk around the neighborhood. He enjoys church, baseball and movies. She wants him to get his own place because she thinks he could learn living skills -- cooking, housecleaning, getting around town, if he didn't have his family to fall back on.

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