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Two disabled people, Two options for care

At the heart of the legal battle over whether or not the state should close its homes for developmentally disabled adults is whether it's best for severely retarded people to be living in a state-run homes or in community residences.

To understand both perspectives, WBUR's Monica Brady-Myerov meets two people living in each situation.TEXT OF STORY:

MONICA BRADY-MYEROV: First meet David Capezzuto. He has curly black hair, bright eyes and is always smiling. His mother Deborah Capezzuto remembers when her second child was born he was arching his back a lot, but doctors didn't see anything wrong.

DEBORAH CAPEZZUTO: They said oh we'll check in out in a couple more weeks. They checked the fontanel and it had closed and he was severely retarded and I always cry, he was severely retarded and he probably wouldn't live past 6 years old.

BRADY-MYEROV: David is now 35 years old. He has never walked. Doctors believe his condition was caused by an infection. They say he's blind and deaf. But his mother thinks some things get thru.

CAPEZZUTO: We think he can see things but he just doesn't know what he can see. He hears sounds and he relates to them but nothing where he can relate to them but he nothing like he can vocalize moan.

BRADY-MYEROV: Deborah cared for him for two and a half years but couldn't continue because she had three other children and he needed a high level of medical care. He spent years in nursing homes with varying degrees of care. In some he went to the hospital often, mostly for choking on his own saliva. He lost weight and was jittery.

Deborah wanted better care so she looked into other options. She didn't want to put him in any of the six state run facilities because in 1974 when she last visited the Fernald Development Center, she was appalled by the conditions.

CAPEZZUTO: I looked and I said to the doctors you gotta be kidding me. There were aids and nurses sitting on chairs and reading the newspaper and all these kids god bless them lying down, David's age with a pamper and a t-shirt and I though oh my god this is not the life for him.

BRADY-MYEROV: That year a federal lawsuit forced the state to make sweeping changes to improve care at Fernald. In a minute we'll meet a long time resident.

Deborah Capezzuto chose the Northshore ARC for David. It's a privately-run community home in Burlington. It's a one story grey house on a residential street.
The only hint David's home is a group home is the large driveway with three handicapped vans.

CAPEZZUTO: I told everybody I hit the lottery this is like a dream come true. He goes to church every Sunday he's been to the movies probably more times that I have been.

BRADY-MYEROV: There are two staff members to every resident. Nursing care is provided for 60 hours a week. And David travels to his doctors appointments.

CAPEZZUTO: He's done so well since he's been here. He's has been in the hospital say that's for sure. He's healthy. I go to bed at night and I can sleep something I haven't done in the past 7 years.

BRADY-MYEROV: Like others in David's condition, his care is paid for by the state department of mental retardation, social security and Medicaid. It costs about $109,000 a year to care for someone like David in a community program. The cost is more than double in a state home. That's part of the reason why in 2003 Governor Mitt Romney moved to close all state run facilities and move people to privately run homes.

It's also part of a national movement of deinstitutionalization. Governor Deval Patrick is filing a brief later today which will indicate where he stands.

Currently just under a thousand people live in state run facilities. One of them is Michael Perlman. He would have to leave the Fernald Developmental Center in Waltham if it's closed, something that concerns his family.

WALT PERLMAN: My name is Walter Perlman and Michael is my oldest brother we are three brothers my parents had him when my dad came back from the war. In those times the doctors recognized instantly he was a downs baby but they didn't tell my parents. And thru a lot of agonizing they ended up bringing him to the Fernald School he was institutional here at approximately age 3 been here ever since he's 60 now.

BRADY-MYEROV: Michael lives in a cottage, one of 13 buildings housing 189 people with a range of developmental disabilities. Fernald is the state's oldest facility serving the developmentally disabled and used to house nearly 3,000 people.

Like David Capezzuto, Michael Pearlman is confined to a wheelchair and doesn't speak. He does try to communicate with moans and grunts. Walter visits his brother once a month and the routine is the same, he drinks a Diet Coke and sits with him in a sunny cafeteria decorated with plastic flowers on the table.

PERLMAN: you ok mike, yeah, moan so now he's more confined to wheelchair and he'll sit he likes the activity of the cottage and investigate where there are people getting together for arts and crafts

BRADY-MYEROV: Michael used to leave the building to get ice cream or a meal. All that changed 30 years ago when his parents tried to transfer him to another state home with a working farm.

PERLMAN: And it absolutely traumatized him because he's very much aware of his surroundings here and now 30 years later he's very suspicious of vans he won't leave the building.

BRADY-MYEROV: When his parents died, Walter became Michael's guardian and is part of the legal fight to keep Fernald open for the remaining residents. Walter says it's the best for his brother's health.

PERLMAN: It's like a family here in that they understand him they know his needs what his movements mean when he's discomforted and when to intervene that's the most important part of it all is a familiar staff.

BRADY-MYEROV: At Fernald there is 24 hour nursing and a higher than average staff ratio — three and a half caregivers to every resident. The facility has an indoor handicapped accessible pool, gymnasium, and activity center on 186 acres.

Walter says the high quality of care at Fernald makes him leery of moving his brother to a privately run home.

PERLMAN: Community residences are great but this move to privatize puts you in a situation where profitability is at the bottom line and there's too much of a possibility of abuse to dumb down there food leave them leave less depends during the day and you have to be suspicious about that.

BRADY-MYEROV: Walter Perlman and Deborah Cappezuto are two people making choices for their loved ones who have a profound level of retardation. They agree each should continue to have the choices open to them — state home or community residence. A federal judge is expected to rule whether that's possible in the next few weeks.

For WBUR I'm Monica Brady-Myerov

This program aired on May 31, 2007. The audio for this program is not available.

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