Difficulty of Placing the Disabled

Loretta Rolland says all she wants is “a real home and a real life” again.

For 51 years, her mother had provided the help that Rolland, who suffers from cerebral palsy, needed to have that life. But when her mother died, the state put her in a nursing home. Six years later, she is still there. Still yearning to “be with people my own age.”

Bruce Ames managed to live on his own for more than 20 years. He even got and kept a job.

Ames was one of thousands of mentally retarded people in western Massachusetts to benefit when a federal judge--appalled by inhumane conditions at the Belchertown State School--devoted the next decade to forcing Massachusetts to create community placements for its residents.

Then, when the family Ames had been living with had to give up the work, the state Department of Mental Retardation put the 47-year-old into a nursing home.

“They said it would be temporary. That he wouldn’t be there for more than three months,” said his sister, Linda Bock of Weare, N.H.

Two years later, he is still in a nursing home.

“These are the forgotten people,” said Steven Schwartz of the Center for Public Representation.

The Center and other advocacy groups have filed a federal suit in U.S. District Court here on behalf of Rolland, Ames and an estimated 1,600 other mentally retarded and developmentally disabled people now in Massachusetts nursing homes.

Lawyers don’t have exact numbers, but they estimate that about a third are in their 40s and 50s. More than half have already qualified for community care. And they say that out of the more than 870 people the state’s own screening found needed specialized services aimed at their disability, only 114 are receiving the extra help in nursing homes.

State officials say the problem is too little money and a waiting list of 3,000 people already seeking residential placements. Over the last two years, the legislature has appropriated $15 million toward reducing the waiting list, including $10 million to create group and other homes for those being cared for by elderly parents.

“It’s part of a larger problem,” said Leo V. Sarkissian, executive director of the Massachusetts chapter of the Arc, an advocacy group for the mentally retarded.

About 2 million of the nearly 7.5 million mentally retarded people in the United States are older than 50. And as their parents age or die, many of these adult children face uncertain futures.

Today, nearly a quarter of a million mentally retarded people are on waiting lists for either residential or day services, according to the Arc.

In Massachusetts, about 750 families--nearly a quarter of all those on the waiting list--had been waiting at least a decade for a residential placement for their adult sons or daughters, according to a 1977 study commissioned by the Massachusetts Arc.

The average age of those caring for retarded adults is in the 60s, and some are in their 80s.

“It’s tough enough for the average citizen facing their senior years, but imagine adding to that the worry of how you can be assured that your son or daughter will get the support they need,” Sarkissian said.

Massachusetts isn’t alone in struggling with the problem.

New York Gov. George Pataki has proposed spending $230 million over the next five years to trim his state’s waiting list of 6,500.