(Cross-posted from The 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.
For the parents and guardians of the people living at Seven Hills.
Its unfortunate that there was no acknowledgement by the administration or other advocates that for some, facility based care IS the best possible situation. Its an unfortunate reality that must trump ideology.
I’m not exactly sure why the administration quietly decided to leave the people at Seven Hill be. I guess it doesn’t matter. What’s most important is these people are staying put where their parents and guardians want them to be.
Congratulations to the Seven Hills group. I applaud your courage and stamina. I hope they are celebrating and breathing a big sigh of relief now that the battle and uncertainty that have overwhelmed their lives for years is ended.
The above post by by COFAR’s spokesperson represents one more distortion about the Rolland Court Settlement. Under the actions of the Federal Court, an independent Court Monitor was tasked with assessing all members of the Rolland Class, based upon objective Court and expert approved criteria, to determine if the nursing home setting was the best placement for the individual.
Individuals were recommended for transition to a community setting to provide community integration and improved services if the Monitor found the individual would benefit from such a move.
As a result of this process: (as stated in the Metro West DailyNews, May 8, 2013) “More than 1,100 people transitioned into community-based housing from 2000 to 2007 under the first settlement with the state… About 670 more moved since a second settlement in 2008, with another 30 scheduled… About 135 people remain in nursing facilities due to complex medical issues.”
The individuals at the Seven Hills Pediatric Nursing Center in Groton, were not moved because they did not meet the objective and expert criteria set the Court Monitor. For the COFAR spokesperson to suggest anything else is a distortion of the truth and a serious misrepresentation of the Federal Court’s action.
and it is the only reason you post on this site. We must be doing something right!
Also, you have yet to disclose in your BMG profile that you are the head of the Association of Developmental Disabilities Providers, which has a financial stake in deinstitutionalization. You never make that clear in your posts, except for one instance in which you were called out on it.
Your charge that I’ve distorted the Rolland case is false. The post never says the Seven Hills families were not evaluated individually by the Court Monitor. What it says is that the CPR and the administration did not acknowledge that congregate care facilities, such as Seven Hills, can be appropriate settings for people with developmental disabilities. As a result, the Seven Hills families were left in a state of uncertainty as to whether their loved ones would be moved from the facility for five years.
The post, in fact, acknowledges that many people have been inappropriately placed in nursing homes, and the post specifically congratulates the CPR for bringing the suit to rectify that problem. As usual, you use this forum to attack COFAR without addressing the substance of what I’ve written.
I thought the post was well-balanced, acknowledging the accomplishment of moving 1000+ individuals out of inappropriate living arrangements to more appropriate homes and receiving active treatment supports. It provided a good summary of a long-term, complex legal case. It was clear to me that a Court Monitor did extensive evaluations of class members to determine the best placement option.
I went to the link to the CPR website that was provided. Buried in the article on this was one sentence made by the Judge that, after visiting and meeting class members and facilities, that some of these individuals can’t be moved. A fact that the parents and guardians knew 5 years ago when they were just swept up into the class action suit apparently without their knowledge. They were forced into a legal battle they did not initiate with the fate of their severely disabled children hanging in the balance. I can only guess how much anguish and anxiety (I won’t even mention the financial buren) they have suffered because someone or some organization thought they knew what was better for their children than they did.
Yes, it was a huge accomplishment to move 1000+ individuals into appropriate homes–kudos are definitely in order.
BUT, a simple acknowledgment by those congratulating themselves that they were in fact wrong about the kids at Seven Hills is not too much to ask or expect considering what the parent have been put through. Actually I’m sure they are more than happy to just quietly get their letters telling them their kids won’t be moved and disappear into the background.
Not everyone can live and thrive in a community setting. The court said it and you said it when you highlight the Court Monitors findings that in some cases facility based care IS the best option.
Since Seven Hills is a vendor operated facility, the type of organization you represent and lobby for, the individuals living there are correctly placed–what is your issue?
Consistently, the post’s writer presents a narrow and incomplete picture. I respond to his posts when that is the case. The Rolland Case was handled through a Court Monitor who used objective, not subjective, criteria that successfully moved over 1000 people and left those appropriate in their current setting. The COFAR spokesperson questions the motives of anyone who questions his assertion by suggesting that they do so for monetary reasons, rather than sincere belief.
making a “serious misrepresentation” to accusing me of presenting a “narrow and incomplete picture.” I guess that’s progress. For the record, I’m not questioning your motives; rather, I’m saying you should disclose your identity on this site because you head an organization that has a financial stake in the matters you are commenting on.
I wish that Mr. Jayhawk could know the suffering that this case imposed on so many Seven Hills Pediatric Center families. Several of the residents whose families were battling the suit died during these five years of struggle. The suit was the deepest source of distress to their parents during their child’s last years. They attended court hearings in Springfield where they were nastily lectured at by Judge Neiman. They saw their child shuttled about and lose attention while staff sat in meetings with the Court Monitor and DDS due to the suit. They received a thinly veiled threat from Assistant Sec. of Health and Human Services that her office would investigate whether SHPC was licensed to care for adults if we guardians continued to resist the Rolland process. The families spent hundreds of hours in meetings and seeking out legislators to attempt to find someone to stand up for their children. Several of the parents sought medical help due to the increased anxiety and stress from the case. When their children died due to the natural course of their many medical problems, we all mourned together. None of us would mourn for the self-righteous extremist opponents of congregate care who imposed this hell on us. Not one of those advocates has shown a single iota of concern for the well-being of our children, who are among the neediest individuals in this world. If any one of them has a conscience, they should be deeply ashamed. We have never heard the slightest word of apology from them.
In case I wasn’t clear enough on the specific point Mr. Jayhawk made about each individual being evaluated … my point is that the SHPC families begged the courts, the Court Monitor, DDS, Health and Human Services, their representatives, etc., to listen to them and their children’s doctors and make the determination that the children should not be moved promptly. Instead, the Court Monitor and DDS insisted on keeping most families waiting three or four years or longer, or in some cases never gave a decision before the resident’s death. The parents felt there was hostile intent given the way they were lectured at by the judge and the Health and Human Services officials, the judge’s obvious siding with the de-institutionalization advocates, and the advocates’ never-hidden commitment to a zero congregate care position. It was those parties’ refusals to admit the residents’ needs for the care they could receive only in the SHPC facility that dragged the families through so much unnecessary torment. People don’t live forever and every parent worries they won’t be around to defend their child against hostile forces, thus the urgency of having decisions made promptly, the opposite of what was done. If the organizations on the de-institutionalization side would explicitly say they favor getting the care that is needed for each individual rather than that they will pursue the de-institutionalization agenda regardless, that could help. Even the Disability Law Center attorneys acted in a hostile manner towards our families, refusing to talk with us when we approached them. It’s an amazing case of supposed do-gooders acting demonically in the name of their cause.
stated.