Families, friends of institution for people with developmental disabilities in Massachusetts protest its closing

From The Republican in Springfield, Mass.:

Frances L. "Dustie" Gauthier, of East Longmeadow, fights back tears when she recalls taking her then-9-year-old daughter, Donna Marie, to the Monson Developmental Center on June 12, 1969.

She and her late husband, William J. Gauthier, took their child to the institution because, like many other families, their doctor told them to do so. Donna Marie was having up to 25 seizures a day. Now aged 48, she is still profoundly retarded and cannot speak.

While the family felt the conditions at the Monson center were horrible when Donna Marie first arrived, with rats in the kitchen and patient beds end-to-end like a warehouse, the Gauthiers, along with the families of patients at Monson and other institutions such as the Belchertown State School, began a court battle in the 1970s that led to an infusion of cash to the facilities and the relocation of some patients to community-based homes.

The battle, started in 1972 by the late Benjamin Ricci, of Amherst, led to improved conditions for mentally-retarded people statewide. Belchertown State closed in 1992. An agreement with the state required that retarded people have individual service plans tailored to their needs.

Now, the families and guardians of the 136 people still at Monson, as well as three other state institutions, are preparing for a new battle. They are happy with conditions at the state-run facilities, but Gov. Deval L. Patrick has proposed closing Monson and three other facilities, the Fernald Development Center in Waltham (in 2010), the Glavin Regional Center in Shrewsbury, and the Templeton Developmental Center in Baldwinville. Dustie Gauthier, now 79, worries that her daughter will not thrive with a move into the community.

Donna Marie Gauthier has a seizure disorder and a brain disease which will eventually take her life, according to her mother. She cannot communicate, but is kept busy by the center's staff with simple activities she enjoys.

"I don't believe there is a place where she can get the medical care she gets here," said Dustie Gauthier. "The people here, it's like they are hand-picked. They are so dedicated. They take their jobs home with them."

She is vice president of the Monson parents' and friends' group, and, with her husband, as served as a guardian to more than 150 residents at the Monson Developmental Center.

In announcing the plan, the governor and the state Department of Health and Human Services touted "more community-living options for people with developmental disabilities." Residents of the institutions that are closing will transition to community settings or to one of two remaining facilities, the Wrentham Developmental Center and the Hogan Regional Center in Danvers, both in eastern Massachusetts.

The state Department of Mental Retardation will work with residents, families, and guardians in a "person-centered" process as the closures move forward, according to the state.

"This expansion will create real choice for many people with developmental disabilities for whom the community has never been an option - all while providing equal or better care for the residents in a community setting," said Health and Human Services Secretary Judith Ann Bigby. Reaction to the closure idea has been mixed.

Leaders of the Parents and Friends of Residents of the Monson center object to the idea, saying that the state has invested millions of dollars into the facility, which they now say is top-notch.

The Massachusetts Coalition of Families and Advocates for the Retarded also denounced the closure, with its president, David J. Hart, saying, "Moving a loved one into the community system might be a death sentence."

While the Patrick administration says the closures will improve the quality of life for people with disabilities, family members say that life in privately-run homes requires constant monitoring and oversight to ensure proper care.

Ninety-year-old Salvatore P. Panzera, of Worcester, has given guardianship of his son, Johnny, to his daughter, Margaret Gingras, of Warren, but remains president of the Monson parents' and friends' group. Like the Gauthiers, Panzera took his child to Monson in the late 1960s at the advice of the same doctor who advised the Gauthiers.

Johnny Panzera, now 49, lives in Pine Ridge, the former home of the center's superintendent which now houses six residents who do their own cooking. He has been a dishwasher at a West Springfield restaurant for 15 years.

After the federal lawsuit that led to a consent decree, the state poured millions of dollars into Monson, upgrading the buildings, conditions, and staffing levels, said Salvatore Panzera. He, along with Dustie Gauthier, has been active in the parents' group for almost 40 years.

"We got this place looking the way it is," said Panzera. "It's the most up-to-date facility in Massachusetts. The governor has never been to an institution for the mentally retarded. He doesn't know how the tax dollars are being spent. If he came here, it would be a different story."

While Johnny Panzera might be able to make the transition into the community, or the building in which he lives may be kept open, residents with major medical problems could face a crisis if moved, says Panzera.

Many of them are elderly, he said, and up to half of them may die before Monson is slated to close in 2013.

According to the state, 900 people live in the commonwealth's institutions, and 32,000 receive community-based services. In the next four years, the state expects that about 316 people will transition into community-based settings.

For those involved in the closure of the Belchertown State School, watching what is happening at Monson is difficult. Many know the challenges of overseeing the care of a loved one who is in a community home.

For many years, Donald E. Vitkus, 66, of Chicopee, who was once labeled "a moron" by the state, made a point of calling the governor's office and demanding that the institutions which house the state's mentally retarded be closed.

Vitkus, who spent 13 years living at Belchertown, has graduated from Holyoke Community College and works in a day program that serves the disabled. About five years ago, he met a man who changed his mind.

Vitkus, who still cries when he remembers being alone in the state hospital at Christmas, met a man who had been devastated by the closing of Belchertown. The employees had been his family.

"His staff was his family; that was all he knew," Vitkus said. Vitkus worries about how the care of Monson residents will be overseen.

"There must be a monitoring system that the quality of care is there," he said.

Sheila B. Paquette, of Westfield, president of the Advocacy Network, has a brother who was at Belchertown for 18 years. He now lives at a group home in West Springfield. The network is the current form of the group that fought the conditions at the Belchertown State School.

It has not been easy for Paquette. She is on the telephone to advocate for her brother's care almost every day, and has filed a lawsuit to improve his care.

"I've had to fight very hard to get my brother with the agency he is with, and even then there are problems," she said.

Twice since he has been out in the community, her brother, now aged 53 but whose mental age is that of a 3- or 4-year-old, almost died from abuse and neglect. Although he is unable to speak, he was once sent to a hospital in an ambulance without a staff member.

Staffers in privately-run homes often earn only $10 an hour, with no insurance benefits. Employees of the state are paid better and have an array of benefits, Paquette said. She feels for the families of those at Monson.

"For myself, I feel these people better get on the stick and start demanding that the DMR (state Department of Mental Retardation) show them the community-based programs that will take care of their loved ones," said Paquette.

Palmer resident Gail S. Orzechowski's sister, Carol, spent 27 years at Belchertown State. When it was closed, Carol went to a group home in Amherst, where she was abused. Now 69 and employed by a company in Orange for more than 10 years, Carol is in another group home in Amherst where, Orzechowski feels, she is happy.

At one time, Orzechowski and her husband, Edward W. Orzechowski, who are part of the Advocacy Network and the nationwide group, Voice of the Retarded, were totally "pro-community."

But more recently, they have met family members of those who are in the institutions slated for closure.

"Their children are very fragile physically," she said. "They don't see what the community can do for them. They need services. It really opened my eyes. You have to look at every situation."

However, the state says the experience of having gone through the closure of the Belchertown State School allows the Department of Mental Retardation leadership and staff to "bring to this process extensive knowledge and experience gained from more than 30 years of community transitions," according to the Health and Human Services statement.

The future of the more than 400 people who work at the Monson Developmental
Center is uncertain. There are almost 1,600 employees at all the centers, and the state has promised the creation of new job opportunities as down-sizing occurs, re-training, and assistance with finding jobs.

Also unknown is what will happen to the 681-acre, state-owned campus when the center closes. Town records show that there are 36 buildings on the property, and that its assessed value is almost $17.6 million, although it is currently tax-exempt.

The state has said it will work "collaboratively" with community leaders for property reuse. The Belchertown State School was closed in 1992 and sold to the non-profit Belchertown Economic and Industrial Development Corporation for $10 in 2004.

Efforts to develop the 150-acre main campus, which has 30 buildings, have moved slowly. In October 2007, the corporation severed relations with the Chicago developer who proposed a $200 million resort there.