(Cross-posted from The COFAR Blog)
In many of the photographs that Rosemary Dumont has of her son Stephen, a red vertical wound can be seen at the top of his forehead, almost seeming to divide his forehead in two.
That wound is the result of Stephen’s habit of banging his head on any hard object near him, such as the corner of a table. Before he was admitted to the Glavin Regional Center in Shrewsbury five years ago, he would open up the wound on practically a daily basis.
Community-based residences and hospitals tried to solve the problem with drugs, which didn’t work. It got to the point where no community-based group home would keep or accept him as a resident. At one point, the only place his parents, Rosemary and Will Dumont, were able to find for him was the controversial Judge Rotenberg Center. There, Stephen was given electric shocks when he banged his head. But that didn’t stop the behavior.
The story was finally different at the Glavin Center where the staff have been able to reduce Stephen’s head-banging episodes to once or twice a year through constant supervision and supportive behavioral treatments. Now, he’s able to go home to stay with his parents on weekends without the threat of a flare-up of his aggressive behavior. Those home visits weren’t possible while he was in the community system.
The Dumonts know this “miracle” of treatment for their son will disappear when Glavin is closed, as the Patrick administration is moving quickly to do. Not only is there no community-based setting that is likely to accept, much less successfully treat, Stephen, any change at all in his living arrangement is likely to trigger a descent into his old cycle of self injury.
For Stephen, who has an intellectual disability in addition to having cerebral palsy and deafness, the act of leaving a long-term home such as Glavin and its staff and fellow residents results in a conviction that those people have all died. “He loves all these people (at Glavin) to death,” Rosemary says. “He can’t handle the change.”
For that reason, the Dumonts are desperate to keep Glavin open. And they know that for now, the fate of the center rests with one man — State Senator Stephen Brewer of Barre.
Under the Legislature’s current budget process, it is totally up to Brewer whether to approve a state budget amendment that would require an independent cost analysis before the Department of Developmental Services can move more people out of Glavin and subsequently close the center. Brewer, who is chairman of the powerful Senate Ways and Means Committee, has the authority to decide whether to place all proposed budget amendments in either a reject pile or a pile of amendments headed for a single up-or-down vote on the Senate floor this week.
So far, Brewer hasn’t given the Dumonts much reason for hope that he will accept the study amendment for the floor vote. When the Dumonts and a small group of other Glavin family members met with Brewer earlier this month to urge him to allow the study amendment to reach the floor, Brewer told them that he “didn’t have the energy” to fight for the Glavin Center, Will Dumont said. Dumont said Brewer referred to it as a “losing battle.” The Dumonts, who live in North Brookfield, happen to be constituents of Brewer’s.
The administration is closing Glavin and three other developmental centers, contending they have become too costly to continue to operate. The Dumonts and other supporters of the centers disagree with the administration’s cost analysis. COFAR, a family-supported nonprofit organization that I work for, maintains that the administration’s cost analyses for all of the centers have been flawed and that an independent study is needed.
COFAR moreover believes it would be cost effective to the state to expand the missions of Glavin and the other developmental centers by enabling them to provide medical and other hard-to-get services to community-based DDS clients. Glavin, for intance, has long provided medical, dental, speech, psychology, guardianship and other services to intellectually disabled persons throughout central Massachusetts.
It’s the hope of the Glavin families that an independent cost study will establish once and for all that the savings in closing the facility are illusory. That, they hope, would convince the Legislature to block the administration’s plans to close Glavin.
But the administration strongly opposes an independent study, as does the Arc of Massachusetts and the Association of Developmental Disabilities Providers, which are vocal opponents of the developmental centers. And Brewer has shown little inclination to oppose those organizations or the administration, as evidenced by his statement to the Dumonts about lacking the energy to fight for the facility.
Yet, if the battle has been a losing one, that has at least partly been because of Brewer himself. Last year, Brewer scuttled a similar independent study amendment, which had been filed by Senator Michael Moore of Worcester. Moore has once again filed the study amendment. It would require that the cost study be done by a non-governmental entity selected by the state Inspector General.
Will and Rosemary Dumont are hoping this time they can scrounge up enough local support for Glavin that they can put some counter-pressure on Brewer. Will Dumont has enlisted all his friends in his hunting club near his hometown of North Brookfield to call and email Brewer’s office. Last week, Will, Rosemary and some other Glavin family members visited legislators’ offices in the State House. Meanwhile, Rosemary has been signing up friends on Facebook to support the cost study, and said last week that her effort had “gone viral.” Other Glavin families are making calls and sending emails as well and urging their friends to do so.
We may know whether their efforts have paid off by tomorrow when the Senate begins debate on the budget. We hope Senator Brewer has enough compassion for the residents and families of the Glavin Center that he will at least put the amendment for the cost study into the pile for a Senate floor vote.
That a “public servant” elected by the people to represent the people would even have the nerve to utter the words that he doesn’t have the energy to fight for the totally powerless and completely vulnerable people in his district. Used to be you could at least count on a politican to give you “lip service”. Now the severely developmentally disabled people of his district are even worthy of lip service.
Even though the folks at Glavin have their hands full trying to save the lives of their familiy members from the mandates of an administration completely devoid of any human compassion, they should focus some of their collective efforts to see that Senator Brewer is not re-elected.
The Glavin Center is or was an important safety net for the entire system. When I was working for COFAR I heard from several family members, one from my own hometown via my mother, whose stories were quite similar of dually diagnosed loved ones who did not respond to psychiatric medicine well in group home settings (where even a pro-closure survey of studied, by Kozma and others, concedes too much chemical restraint is used relative to larger more comprehensive faciltie) who had to advocate for years and pull political strings to get their person in Glavin, where he or she has thrived and recovered some ability to function in the community. I am struck by the wastefulness of empty beds in this relatively modern, never overcrowded or badly run, facility, centrally located, and even supporting a number of high-level state operated group homes just outside the grounds. While the land just off Rte. 9 may have some commercial potential, Glavin was never a farm, and ironically the piece of land right on Rte 9 sold for development has been a shuttered Borders bookstore. Meanwhile the state is starved for hospital beds for persons with mental retardation and a mental health issue, who are too vulnerable for the dwindling number of psych wards. At Glavin they had long-term services, and every year returned to community settings, a few people. The youth I now serve as a mental health worker, if they have co-occuring intellectual disability and need psychiatric hospitalization, often go to a hospital in another state, Peoople under 22 would not be able to go to the Glavin Center as a DDS facility, but part of the center could be repurposed even now as a specialty adolescent ward, even under private non-profit management, with ability to use the back-up services available, and bring help to many families. It such an odd time to be closing such a workable facility, when more than half of DDS clients live with parents over 60, and residential budgets have been static or cut.
mzanger is so right….a gigantic waste. You can easily say that about each of the developmental centers the state is closing. Each of them have unique facilities and services. I’m willing to bet you could easily find similar stories (as the Dumont’s and mzanger)at each of these facilities.
The examples of repurposig Glavin are really just a beginning of how you could maximize the use of this and the other developmental centers. But that would require someone in the administration to do a little creative thinking. The mind set is obviously “all or nothing” regardless of the waste or human cost or even just that its the right thing to do.
Not only should Glavin go, but everyone of these old decriptive state facilites where people are being warehoused. They belong in the community, not a “community of themselves”.
What a hurtful and insulting comment by “jdent”. How dare he/she imply that we the families would warehouse our loved ones. I spent years trying to find a facility that would best care for my son. Twenty three years ago I found the only place that could meet the special needs he required to survive in this world. He has received the best on-site quality care in a safe environment that NO community home can match. I had a choice as did all the other families. We chose the facilities that “jdent” refers to as warehouses, because we knew that they would be best cared for and a new hope would be provided for them. Many of these clients could not and will not survive in the community. Community life failed them. Templeton Developmental Center saved my son.
I am also outraged at the term being used when referring to our loved ones suffering from this terrible disability.
A “WASTE’ – that they are a waste of time and money. Is this the “new world” ?? What in God’s name have you all become.