COFAR blog

This post is about one of the few cases in Massachusetts in which families and guardians of the residents of a congregate care facility for the disabled appear to have won out over ideological efforts to move their loved ones into community-based group homes.

Some 43 residents of the Seven Hills Pediatric Center in Groton, who had been targeted for eviction under a federal lawsuit, will now apparently be allowed to stay in their long-time home at the nursing facility some five years after their parents began a campaign against the moves.

In May of this year, a federal district court judge formally ended the Rolland v. Patrick suit after the plaintiffs agreed the Patrick administration’s efforts to move hundreds of developmentally disabled nursing home residents to group homes had satisfied the conditions of the suit.

Given that the suit is now over, the impetus to move the 43 residents out of the Seven Hills center is apparently over as well.

Advocates for community-based care and the Patrick administration are congratulating themselves on the final resolution of the Rolland case as an example of a successful effort to move disabled people out of institutional facilities. 

To the extent that the Rolland suit has enabled people who don’t belong in nursing homes to get adequate care in the community system, we applaud those who brought the case.  Among them are The Center for Public Representation, a government-funded legal advocacy organization that advocates for legal rights for people with developmental disabilities and their families.

Where we take issue with the CPR and their supporters is their apparent failure to distinguish between congregate care facilities that don’t provide adequate treatment and those that do.   In announcing the end of the Rolland case, neither the CPR nor the Patrick administration made any mention of the Seven Hills families who had wanted their children to stay at the center and who didn’t want to be part of the lawsuit.

There was also no mention of the fact that there are some institutions, such as Seven Hills and state-run developmental centers, that might be appropriate settings for people with severe and profound levels of disability.  The anti-institutional ideology of the CPR, the Arc of Massachusetts, and similar organizations is so strong that those groups never acknowledge that care in congregate facilities might be appropriate under any circumstances. 

Rolland is a class-action lawsuit brought in 1999 against inadequate nursing home care for people with intellectual and developmental disabilities.  There is no question that many people with developmental disabilities have been inappropriately placed in nursing homes, which do not provide the level of treatment and activities these residents require.  Ironically, many of these inappropriate nursing home placements have occurred as Intermediate Care Facilities (ICFs) such as the Fernald, Glavin, Monson, and Templeton developmental centers, have been phased down or shut by the administration.

But unlike most nursing homes, Seven Hills is staffed and equipped to care for people with severe and profound levels of developmental disability and complex medical conditions.  As the Seven Hills families’ website notes, none of the residents there can talk or walk, and all have a mental age of less than one year. 

In 2008, the Seven Hills families were informed by the Patrick administration that their children were on a list to be moved to the community system as part of a settlement agreement in the Rolland case.   The families were outraged by this, partly because they knew that any attempts to move their children would be disruptive and dangerous to them, and because they knew that the specialized care at Seven Hills was not likely to be found elsewhere.  The families’ website noted the following about the children living there:

Their fragile lives have been sustained thanks to the care-givers at Seven Hills. Their families believe that state-mandated placement changes to so-called group homes are likely to have tragic consequences.

The Seven Hills family website details stories of residents there such as David Braga and Eric Voss, both of whom are quadriplegics and who have severe intellectual disabilities.   As the Boston Globe put it in a story  on the pending evictions from the facility in 2008:

The (Rolland) lawsuit hinges 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…

(But Frank Voss, Eric Voss’s father)  argues that his son, who was born with cerebral palsy, differs dramatically from those who might benefit from the (Rolland) 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.

Louis Putterman, whose daughter is a Seven Hills resident, said that since the dismissal of the Rolland suit, the families have been notified that their children will not be moved from the facility.  But, he said, the administration has not acknowledged that it may have been wrong in the first place to have targeted the residents there for transfer from the center.

For five years, Putterman said, he and the other Seven Hills families lived with uncertainty over the fates of their loved ones.  They also had to put up with what he said were detrimental changes in the care of their children as a court monitor in the case heaped paperwork and other bureaucratic requirements on the Seven Hills facility.   Putterman said his daughter suffered significant health effects from being transferred to a different floor and room in response to a complaint by the court monitor about waiting times at elevators in the building.  “It was done without adequate regard for consequences,” he said.

The Seven Hills parents fought back, however, dogging Governor Patrick at campaign and town meeting events (remember those?).  The families also went to court in May 2008 to decertify the Rolland class and appeal the settlement.  Their motions were denied, in part, on the basis that they had waited more than 10 days to try to opt out of the suit.  They contend they were not informed of its existence for nine years.

“No Seven Hills guardians were informed that the suit existed until 2008,” Putterman maintained.  He said he complained to the state Attorney General’s Office in 2009 that he believed the plaintiffs attorneys had falsely stated to the Circuit Court that the families received notification of the suit in 1999, but he said he never received a response from the Attorney General’s Office.

The Seven Hills families’ years of uncertainty actually began in 2008, following what turned out to be a second settlement of the original Rolland lawsuit.  Following the initial settlement of the case in 2000, the state had placed about 1,000 class members in the community.  But the plaintiffs charged that the state had largely failed to provide specialized services to about 800 class members who remained in nursing homes. 

In the 2008 settlement, the state agreed to move an additional 640 of the 800 class members remaining in nursing homes to community placements over four years.  But unlike the 2000 settlement, the 2008 settlement did not give parents a veto of decisions to transfer their children.

In another bit of irony regarding this case, the 2000 settlement agreement’s specialized-services provisions required the state to provide “active treatment” to nursing home residents, based on regulations governing ICFs – the very facilities that the CPR and the administration have sought to dismantle.

In their May 2008 legal motions, the Seven Hills families argued that the differences in the levels of disability between their children and the other class representatives made the class certification improper. They also sought a provision giving them the right to veto a transfer decision, as the 2000 settlement had done.  The parents’ motions were denied in the district court, and they lost on appeal to the First Circuit U.S. Court of Appeals.  We think the motions were denied largely on technical grounds. 

The real problem here, in our view, lies with those who lose sight in their zeal to promote “community-based care” that no single system necessarily works for everyone.  Community-based care is appropriate for those who need it and who want it.  But the wishes and life experience of the families and guardians of all profoundly developmentally disabled people should be respected. 

In June, the Seven Hills families adopted a public policy statement that asserts, in part, that:

…while community placement may lead to an improvement in quality of life for many higher-functioning cognitively impaired individuals, there exist more severely impaired and medically fragile individuals whose interests are better addressed by care in a facility such as SHPC (Seven Hills Pediatric Center).  We will continue to work to inform the public, legislators, and policy-makers about the need for a continuum of care options.  May the well-being of our loved ones always take precedence over ideology when making the life-and-death decisions that affect them.”

Federal law recognizes families and guardians as the “primary decision makers” with regard to the care of their disabled loved ones.  The CPR and the Patrick administration should be among the first to show they are aware of that.