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Home » Our Stories » The Story of Eric Voss & His Family

The Stories Of The 43 Families Affected by the Possible  De-institutionalization of the Residents at Seven Hills Pediatric Center
The Story of Eric Voss & His Family
Eric is a Seven Hills Pediatric Resident
Article Written by Connie Paige
Parents of 31 profoundly mentally retarded residents of a skilled nursing home here are protesting the state's plan to move them to small group homes, as required by a recent legal settlement involving more than 600 of the mentally disabled across the state.

The parents say the lack of round-the-clock care at the group homes would not meet the needs of their children, who suffer from serious medical conditions, cannot talk or walk, and have a mental age of less than one year.

"He would die," said Frank Voss, of Andover, about his son Eric, if he were forced to move from the Seven Hills Pediatric Center, a Groton nursing home, to a group home.

Voss said he and his wife fear that Eric, a 27-year-old quadriplegic with cerebral palsy, could unexpectedly suffer a medical setback and not receive adequate care in the new setting. "There's no doubt in our minds that this would be the end of him," Voss said.

The June settlement requires the state to move 640 residents with mental retardation or other mental disabilities. State Assistant Secretary of Health and Human Services Jean McGuire said the state is obliged to heed the agreement, but noted the moves are also part of a $20 million initiative by Governor Deval Patrick, called Community First, to provide community homes to more than 30,000 disabled and elderly, some of whom now live in nursing homes.

"It's all about giving people - even people with intellectual impairment - a choice," McGuire said.

The Vosses don't see how a move helps their son. They represent one side in the clash of views over how to care for the disabled. Some believe they should be placed in small group homes with four or five residents. But others - particularly advocates for the profoundly retarded with multiple life-threatening medical conditions - say they need the specialized care of a skilled nursing home.

The legal settlement stems from a 1998 case filed in US District Court in Springfield by the Center for Public Representation, a nonprofit law firm representing people with disabilities, on behalf of Loretta Rolland and others with mental retardation or other mental disabilities in nursing homes.

At the time, there were about 1,600 such residents across the state, according to the settlement. About 1,000 since have been placed in community homes.

The lawsuit hinged on the argument that, according to federal law, the mentally retarded must be provided with the opportunity to exercise personal choice, participate in and contribute to the community, develop and sustain varied and meaningful relationships, and acquire skills that increase self-reliance. That kind of treatment is offered in small group homes but only rarely in nursing homes, the lawsuit says.

The agreement says that by 2012, the state must create 640 new community placement slots for the mentally retarded and disabled and transition that number of nursing home residents into them. The 31 Seven Hills residents are on the list to be transferred.

Some Seven Hills parents said they believe the state is complying with the agreement in a bid to find less costly care. The average price tag for a resident at Seven Hills for room and board is $330 per day, with another $67 daily fee for activities, according to administrator Holly Jarek. The parents say a group home is likely to be less expensive because it would not provide 24-hour-a-day medical supervision.

But the state maintains that costs associated with community placement are comparable to those at Seven Hills. "All group home settings have 24-hour monitoring or oversight," including nursing care for those who need it, McGuire said.

Voss, who manages a laboratory at Transform Pharmaceuticals in Lexington, argues that his son, who was born with cerebral palsy, differs dramatically from those who might benefit from the settlement. Eric is fed through a tube. He cannot talk and has little affect, except to smile sometimes at voices he recognizes. He requires a custom-made wheelchair.

During his early years, Voss and his wife cared for Eric in their home, with the help of registered nurses.

At age 17, after hip surgery, Eric went into a coma for three weeks, suffering additional brain damage, Voss said. Afterward, he needed 24-hour monitoring to prevent a similar episode, Voss said.

At that point, doctors advised the Vosses to put Eric in a nursing home, Voss said. He has been at Seven Hills for 6 1/2 years, and now receives the medical monitoring he needs, said the father, in an emotional interview.

Seven Hills parents say they are furious that, as legal guardians of their children, they were not given notice of the 1998 court action until this spring, or a choice of whether they would be included in the settlement.

"To think that they can do this behind our backs, secretly, is an outrage," Voss said.

The parents say Seven Hills provides the extra-medical social activities required by law, such as trips to the movies and activities providing stimulating sounds, smells, and interaction with an aide. "This notion that placement in a community setting is going to improve his life is total nonsense," Voss said.

Moreover, parents say the agency has not evaluated the medical conditions of the people on the list, and does not have the expertise to do so.

McGuire said the list was developed after only "preliminary" evaluations. Over the next four years, she said, the agency will work to assess each individual's ability to handle and benefit from a community placement.

Stephen M. Sheehy, an attorney representing the parents, said he's filed a motion to decertify the class represented by the lawsuit and has appealed the settlement. If those measures fail, he said he hopes the state will reconsider who's appropriate for transfer.

Online Boston Globe Version Can Be Viewed Here

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* These pages constitute a repository of recent historical information and no longer concern an active suit.