Families Angle to Keep Mass. Home for Disabled
JOHN YDSTIE, Host:
This is MORNING EDITION from NPR News. I'm John Ydstie.
RENEE MONTAGNE, Host:
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: 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.
MONTAGNE: 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: 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.
MONTAGNE: 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: And they have Beryl Cohen. 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.
MONTAGNE: 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: 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.
MONTAGNE: 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.
U: Hey, what are you doing?
BRADY: 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.
MONTAGNE: 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: For NPR News, I'm Monica Brady-Myerov in Boston.
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