Families Angle to Keep Mass. Home for Disabled Family members and guardians of adults with developmental disabilities at Fernald Developmental Center insist that the patients are happiest where they are, and lobbying to keep it open. The state started to close them in 2003 but was blocked by a federal lawsuit.
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Families Angle to Keep Mass. Home for Disabled

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Families Angle to Keep Mass. Home for Disabled

Families Angle to Keep Mass. Home for Disabled

Families Angle to Keep Mass. Home for Disabled

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Family members and guardians of adults with developmental disabilities at Fernald Developmental Center insist that the patients are happiest where they are, and lobbying to keep it open. The state started to close them in 2003 but was blocked by a federal lawsuit.

JOHN YDSTIE, host:

This is MORNING EDITION from NPR News. I'm John Ydstie.

RENEE MONTAGNE, host:

And I'm Renee Montagne.

We turn now to a fight in Massachusetts over whether some mentally retarded adults should be allowed to live in an institution. The trend in the U.S. has long been to de-institutionalize those who are developmentally disabled. But Massachusetts still runs half a dozen of those big facilities, including the oldest such institution in the country. And that's because some of the families of the few adults who still live there are fighting to keep it open. From WBUR in Boston, Monica Brady-Myerov has this story.

MONICA BRADY-MYEROV: The Fernald Developmental Center was first called the Massachusetts Home for Idiotic Children. Diane Enochs of the Department of Mental Retardation stands on the vast, leafy green campus that looks like it could be part of the Ivy League.

Ms. DIANE INOX (Department of Mental Retardation, Massachusetts): This is the start of the original campus that was developed in 1890. It was set up as a small community and for children to come in, to live, to have their education, then to return to their community.

BRADY-MYEROV: For 70 years, it worked that way. But over time it's become a long-term care facility where the average stay is 47 years. As its peak in the 1960s it housed nearly 3,000 children. Today it's home to 184 adults. Most are like Michael Pearlman(ph), who's 60 years old and has been here since he was three. Michael has Down syndrome and because of his disabilities can't speak. His brother and guardian, Walter Pearlman(ph), is fighting to keep Fernald open so Michael can live out his life here.

Mr. WALTER PEARLMAN (Michael Pearlman's brother): It's like a family here in that they understand him, they know his needs, they know what his movements mean, when he's in discomfort and when to intervene. And that's the most important part of it all, is a familiar staff.

BRADY-MYEROV: Pearlman is part of a strong family lobby that's responsible for keeping the Massachusetts institutions open when other states have closed theirs and move people into smaller group homes set in communities. They have a key ally in a sympathetic federal judge who oversaw the quality of care at Fernald for 20 years and is now deciding whether or not the state should be allowed to close it.

And they have Barry Cowen(ph). He was a young lawyer when he represented families who were concerned about conditions of the facility. He won the civil rights lawsuit. He's still working for free for the families 30 years later, this time to ask the same federal judge to block the state from closing Fernald.

Mr. BARRY COWEN (Lawyer): It provides individualized care, active treatment, and a decent, humane process for people who are so afflicted. And to shut down and scatter people, as you would leaves, is tragic and poorly thought out.

BRADY-MYEROV: But other advocates for people with disabilities say those who live in group homes enjoy a higher quality of life. Gary Blumenthal heads the Association of Developmental Disabilities Providers of Massachusetts.

Mr. GARY BLUMENTHAL (Association of Developmental Disabilities Providers of Massachusetts): Institutions are isolated. They're set apart from the community, and it reinforces a negative stereotype of people with disabilities that we have to lock them away, put them away, keep them away, isolate them. It's a 19th-century model.

Unidentified Woman: Hey, what are you doing?

BRADY-MYEROV: David Capazudo(ph) lives in what many advocates for the disabled consider the 21st century model. It's a small group home on a residential street in a community north of Boston. David's mother, Deborah Capazudo(ph), says her 35-year-old son is getting excellent medical care and is part of a community.

Ms. DEBORAH CAPAZUDO (David Capazudo's Mother): I told everybody I hit the lottery. I mean this is like a dream come true. He goes to church every Sunday. He's been to the movies probably more times than I have been.

BRADY-MYEROV: Both sides of this debate have the best interests of people with disabilities at heart. But there's a lot of government money at stake. It costs Massachusetts more than double to house someone in an institution than it does in a small group home. And the state-run facilities have fewer than a thousand people living in them but need $200 million in repairs. Advocates for closing them say that's money that could be spent on improving care for the 9,000 people living in community settings.

For NPR News, I'm Monica Brady-Myerov in Boston.

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