November 14, 2004. One of Mitt Romney’s first official actions as governor in early 2003 was to announce the closing of the Fernald Developmental Center in Waltham, home to more than 200 of the most severely retarded handicapped people in the state. Since then, 39 have left Fernald for facilities operated by the state or private vendors.
But 252 remain, and the families of many of them don’t want their loved ones—some of whom have been at the center for decades—to be forced to move. They also object to what they see as staff cutbacks at Fernald and other such facilities, which serve about 1,200 residents. The state’s long-term plan is to close or greatly cut back services at all of them.
The families’ struggle took them into federal court last week, where they sued to have US District Court Judge Joseph Tauro reestablish the authority over state care for the mentally retarded that he exercised for two decades, ending in 1993. The families and guardians want Tauro to order the state to keep Fernald open. Unless the state Department of Mental Retardation agrees to stop trying to force residents and their families to accept inappropriate placements away from Fernald, the judge should stand ready to step back in.
The reigning code in treatment of the mentally retarded is that they should be treated in the “least restrictive” settings possible. For most, that goal makes sense. But, as Beryl Cohen, attorney for the suing families and guardians, notes, 90 percent of Fernald’s residents are severely or profoundly retarded. Their average age is 59, and many suffer as well from other handicaps, chronic diseases, or both.
State Department of Mental Retardation Commissioner Gerald Morrissey recognizes that it would make no sense to move out all of Fernald’s residents, and he says the department plans to keep a skilled nursing facility there. The families would like to see that willingness to keep some services at Fernald expanded to include facilities for as many of the 252 as wish to remain.
The families’ organization, the Fernald League, is receptive to plans to carve off for development or other purposes much of the land on which the center sits. The campus, with easy access to Route 128, contains more than 160 acres. The league has said it would be content with a “postage-stamp” site for the buildings required to house those Fernald residents resistant to moving.
Fernald, whose first building dated to 1848, is the oldest state center for the retarded in the United States. This country’s – and this state’s – history of treating the retarded has been mixed. It will not be improved by insistence on an approach to treatment that slights families’ and residents’ yearning for stability and familiarity as well as quality.
March 1, 2005. If Gerald Morrissey, commissioner of the state Department of Mental Retardation, could promise the severely handicapped residents of Fernald Developmental Center and their families that closing most of the center’s beds would result in residents moving, just once, to an equal or better state facility, the Romney administration’s push to relocate most Fernald residents might be defensible. But Morrissey could not make that promise at a meeting Sunday, since Fernald is just one of several such centers that the state is likely to close in the future. The residents, their families, and their advocates have no choice but to contest the state’s relocation proposals.
Fernald now has 241 residents. According to Morrissey, the current plan is to keep 80 to 85 beds at its Waltham campus, including about 60 in a skilled nursing facility that would have about twice the capacity of the existing one. He said the relocations make sense as a way to provide residents with the least restrictive setting and to improve efficiency he said Fernald’s central power plant is very inefficient. New boilers would be installed, he said, for whatever buildings are kept after the relocation of most residents. But if the state is willing to make investments in the campus, why not do so to accommodate as many residents as prefer to stay?
The attorney for the residents’ families and advocates, Beryl Cohen, argues that the “least restrictive setting” argument makes no sense for most of the 241. He says 90 percent of residents are severely or profoundly retarded. Many suffer from chronic diseases or other handicaps as well. Their average age is 59, and many have lived at Fernald for decades. For many, relocation would mean a traumatic disruption of routine.
The families say that the push for emptying most of Fernald is coming from the state’s desire to put much of the institution’s 168 acres up for sale. Morrissey says that eventually much of the campus will likely be sold but denies that this is driving the relocations. The families say they would be happy to see the state sell most of the land if it maintained a small portion of it for their loved ones’ continued care.
In January, US District Judge Joseph L. Tauro turned down a bid by relatives and advocates of Fernald residents to reopen a 1970s lawsuit that forced major improvements in the state’s treatment of the mentally retarded. But Tauro directed Cohen to keep an eye on all the cases of residents being transferred out of Fernald and to report back if he sees systemic problems emerging.
The families can also appeal relocations to Morrissey’s office, to an administrative hearing officer, and to state Superior Court. Cohen said the families know something the state takes too little into account: “that Fernald is home for these individuals.” These residents should not be forced to give up their homes for the convenience of the state.
May 23, 2005. The relatives and guardians of the mentally retarded residents of the Fernald Developmental Center who oppose state efforts to close most of the complex and move their loved ones elsewhere have not had much good news lately. Federal District Court Judge Joseph L. Tauro, who has overseen state care of the retarded since the 1970s, has not acted to stop the transfers. But Tauro said something during a hearing on the case last month that has heartened advocates for the residents, many of whom have spent their entire adult lives on Fernald’s Waltham grounds and should be able to call it home for the rest of their days.
When Fernald guardians agree to a transfer, Tauro said, a letter should be included in the file of the resident being transferred saying, “You can always come back. We will leave the light on and the window open.”
That promise of a “light on” at Fernald should keep the state from pushing ahead too quickly on Governor Romney’s February 2003 plan to empty out most of Fernald’s residents and sell much of its 196-acre campus. Under a court ruling, the standard the Department of Mental Retardation must meet for any transfer is that the new setting be “equal or better.”
Finding that for the more than 200 residents will not be easy. According to the lawyer for the families, Beryl Cohen, 75 percent of the residents are severely or profoundly retarded, and many have other chronic health problems. Many are blind or cannot walk.
During the April proceeding, Cohen won two main commitments from the judge: the “light on” letter in the file of every transferee and a promise that the lawyer would have access to residents’ individual support plans dating back before 2003. Those plans from before Romney’s decision to shut Fernald, Cohen believes, are likely to include more ambitious therapeutic services that would be hard to duplicate at outside facilities. Cohen says more recent support plans are omitting such services in order to lower the “equal or better” threshold. The state denies this.
In a recent visit to her 52-year-old twin brothers at Fernald, Diane Booher worried about the impact a transfer would have. In 1995, she said, the brothers were simply moved from one Fernald cottage to their current one, with the same staff, and the trauma was so great that her brother Ronnie, who can speak a few words, said nothing to the staff for a year, nothing to her for two years.
Ronnie has a vocabulary of about 16 words, she said. He once could say her name but no longer. He does say “cold water,” “cup of coffee,” and “go bye-bye.” Both Ronnie and his brother Randy are blind. If they are forced out of Fernald by the state, a “light on” there will be of little comfort to them.