We Are Prepared To Fight

GROTON -- The sealed white envelope arrived one day in May. Inside was a two-page letter to Frank and Barbara Voss, from the state Department of Mental Retardation.
It said that the Voss' severely disabled son, Eric, was included in a decade-old class action lawsuit, Rolland v Patrick. Eric and about 30 others would be evicted from Seven Hills, a pediatric nursing facility that he's known as home for seven years. "It was a colossal shock," said Frank Voss. "Our hearts sank. Because we truly feel, that if Eric is moved from his home, it will kill him." Eric, 27, is a quadriplegic with cerebral palsy. He is fed through a tube and cannot talk. He has little ability to communicate, except he sometimes smiles at voices he seems to recognize.

"Our son is medically fragile," Voss said. "The people who added Eric's name to their list never met our son. How could they possibly think they know what is best for him?"

A hole in the federal law allows lawyers to bring civil-rights class actions forward without the people involved knowing, and without allowing them to opt out. The court settlement requires DMR to move 640 people statewide out of nursing facilities and into group homes by 2012. Judge Kenneth Neiman, who ruled on the case, said the lawsuit was a quality-of-life issue.

Living in group homes instead of nursing homes would allow individuals like Eric to be part of the community, Neiman said.

Voss looks around his son's room. A care provider named Amy decorated it with a race car theme, because she knows it makes Eric smile. She also knows that 1950s music makes Eric laugh. "The people here are family," Voss said. "This is a community. And we're prepared to fight to keep our son in his home."

It began with good intentions. In 1998, attorneys were fighting to get a disabled Agawam woman named Loretta Rolland out of a nursing home.

When Rolland's mother died, the state put Rolland, then 51, into a nursing home for elderly residents. She lived there six years. Rolland had cerebral palsy but could speak, eat and had some mobility. In 2002, with help from her lawyers, Rolland moved into her own apartment.

Voss said someone like Rolland would benefit from community placement. But Eric's medical condition is far more fragile.

"It's a skill for Eric just to eat food," Voss said. "You cannot take people with disabilities and use a one-size-fits-all approach. Especially the people at Seven Hills, they have very specific medical needs."

The case was filed on behalf of 1,600 people. Initially, the case placed more than 1,000 mentally retarded or developmentally disabled people in community-based housing and care from 2000 to 2007. Nearly 800 remain in nursing homes.

Gov. Deval Patrick's administration agreed to a new settlement in May. The state will move at least 80 percent, or 600, of those remaining in the Rolland Plaintiff Class -- including 31 residents at Seven Hills.

"It's irresponsible," said Louis Putterman, whose daughter, Laura, has lived at Seven Hills for 28 years. "How can you make a list without getting parents involved? It seems to defy belief in basic human rights."

Steve Schwartz, the plaintiffs' attorney, said the list is misunderstood in many ways.

"The list is not absolute," Schwartz said.

Before anyone is placed into the community, state officials and doctors must first perform a thorough medical evaluation of all individuals on the list, and then work with families and guardians to consider options.

The state's Executive Office for Human Services said the case focused on hundreds of people who had no choice but to live in nursing homes, where many were forgotten.

"The case required the state to develop community living options, and many people have already successfully moved into the community," spokeswoman Jennifer Kritz said.

Putterman said parents, not the state, know what their child needs.

Most Seven Hills residents enter as children.

Think of a 1-year-old. None of them can walk or talk. None can dress or feed themselves. Almost all are tube-fed, receive multiple medications for seizure and other disorders, and moved from place to place in wheelchairs by nursing assistants.

"They can't tell you or show you what they're thinking and feeling," said Holly Jarek, vice president of Seven Hills. "It takes years to put together a menu of experiences that bring pleasure -- a stroke on the arm, a kiss on the cheek, a song, a change in the pitch of your voice. It's what you collect over time that makes the biggest difference."

Setsuko Gill, a certified nurse's assistant, has cared for Laura Putterman since Laura was 9. Most mornings, Gill wakes Laura and puts on the music that gets her going. Gill picks out Laura's clothes, bathes her, dresses her and braids her hair.

The sound of Gill's voice, Putterman said, makes his daughter smile.

"I know that the people who care for Laura think of her as family," Putterman said. "That brings a parent an extraordinary level of comfort that you just can't begin to put into words."

The families of 43 Seven Hills patients are appealing the settlement in U.S. Appeals Court. Parents have enlisted the help of state and federal lawmakers.

State Sen. Steven Panagiotakos, D-Lowell, visited Seven Hills.

"I saw some of the most complicated medical cases that I've ever seen, and I also saw some of the most dedicated health-care providers I've ever seen," Panagiotakos said. "The bottom line is that if someone's future is going to be at stake in something like this, they should be notified as early as possible to have a say. They shouldn't have it brought to them after the fact."

Panagiotakos is pressing the state to put an agreement in writing that says the families will be consulted and involved in any further matters that include their children.

U.S. Rep. Barney Frank, a Massachusetts Democrat, has filed legislation that requires parents and guardians to be notified about class-action suits, and to allow them to opt out.

Panagiotakos said none of the residents from Seven Hills appears to be in the next wave of 160 scheduled for community placement.

But many parents believe a move is inevitable. It costs $150,000 to $200,000 per year to keep some residents at Seven Hills, and a group home is cheaper.

But at what cost, Voss wondered.

"Our children can't speak for themselves, so we will fight for them," Voss said. "If individuals like Eric are moved, they won't live long. They shouldn't have to give their lives for a lawsuit that has nothing to do with them."

The families of Seven Hills are inviting the public to join them in a march to send a message next Sunday at 1:30 p.m., at Seven Hills, 22 Hillside Ave., Groton. For information, visit their Web site at www.AvertRollandTragedy.org. To read the settlement, go to http://www.rollandatreview.org/ExhibitA_settlement_agreement.pdf.

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