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Federal ‘Settings Rule’ that discriminates against congregate care needs to go
COFAR is joining a number of advocacy groups in urging the Trump administration to rescind a federal regulation that has sharply limited the size of residential settings and other programs for people with intellectual and developmental disabilities (I/DD) in order to make them “community-based.”
In our view, the regulation, which was implemented during the Obama administration, is a key reason the state is continuing to move away from congregate residential care facilities such as the Wrentham and Hogan Centers. It also appears to have led to the elimination of sheltered workshops and other work-based programs in Massachusetts.
The regulation, known as the “Settings Rule,” specifies that in order to meet requirements for federal Medicaid reimbursement, so-called “community-based settings” cannot be “institutional.” That means they can’t group together disabled people because that supposedly isolates them from their nondisabled peers.
Yet, as Together For Choice, a nationwide advocacy group that is leading the fight against the Settings Rule, points out, federal and state governments shouldn’t be able to determine what a “community” is. Rather, communities should be chosen by the individuals receiving the services or by their families or guardians.
Those communities could well exist within a congregate care center such as Wrentham or Hogan. Or they could exist within a sheltered workshop or a day program that provides work activities.
But partly due to the pressure of the federal government, the Massachusetts Department of Developmental Services (DDS) maintains that a community is only found in a group home or possibly even something smaller than that, such as a staffed apartment.
The Settings Rule potentially precludes even group homes from community-based reimbursement if they happen to be located “on the grounds of, or adjacent to, a public institution” such as a developmental center.
You can suggest the elimination of the Settings Rule
In May of this year, the Trump administration asked the public to identify regulations that should be rescinded. Together for Choice and a number of other advocacy organizations have identified the Settings Rule as one such regulation that needs to go. You can go to Regulations.gov to submit your own suggestion in that regard. We are doing so as well.
Suggestions will be accepted on the Regulations.gov site until July 10. Feel free to copy and paste portions of this post in the form that appears. Here is a guide to filling out the form.
We previously raised concerns about the Settings Rule, starting in 2014, when it was first proposed (see our posts here and here). More recently, we’ve asked Health and Human Services Secretary Robert F. Kennedy Jr. to reverse federal restrictions on congregate care. Eliminating the Settings Rule may be a key to that.
Mistaken definition of community
The Settings Rule appears to be one of the reasons the Healey administration today is allowing the Wrentham and Hogan Centers to die by attrition. In denying requests for placement at Wrentham and Hogan, DDS maintains that the care provided there is not community-based and therefore is not the “least restrictive” care available.
But this administration policy ignores the wishes of many individuals and their families, who argue that Wrentham and Hogan are communities in themselves, and are well integrated into their surrounding neighborhoods, cities, and towns. Those families also argue that so-called community-based group homes are often not truly integrated into surrounding communities, and are actually quite restrictive in their policies.
As Irene Tanzman, a COFAR member who has created a Facebook group in support of Wrentham and Hogan, pointed out, residents of Wrentham and Hogan “enjoy substantial access to the community. But no matter what they (the facilities) do, according to the Settings Rule, they are deemed as ‘institutional.’”
In March, Scott Mendel, chairman of Together for Choice, wrote to Drew Snyder, deputy administrator and director of the Center for Medicaid and CHIP Services, terming the Settings Rule “one of the biggest impediments to the development of a wide variety of (residential) settings.”
As Mendel noted in his letter:
At present, the implication of the (Settings Rule) is that there is a single “community,” and that community is the geographic area around the setting. This is an artificial and inaccurate construct…
Rather, (communities) are based on common interests, which is, in fact, the dictionary definition of “community.” Individuals with developmental disabilities should have that same right. They should have access to the “communities” of their choosing and such communities should not be geographically confined. Many individuals with disabilities living in a campus setting (like my daughter) or on a farmstead properly view the campus or farmstead as one of their communities. That individual choice should be respected.
Mendel added that:
There is no reason to discriminate against high quality campus settings, farmsteads and intentional communities. They provide a very legitimate model of care for some individuals with developmental disabilities. They should not be presumed to isolate or segregate the individuals they serve.
The result of the Settings Rule is that shortages of available residential placements have been made worse around the country. “Families across the country are clamoring for the easing of regulatory restrictions to enable the development of appropriate settings for their loved ones,” Mendel stated. “The Settings Rule stands in the way.”
In Massachusetts, neither Wrentham nor Hogan is generally offered by DDS as an option to any of the thousands of people who are waiting for residential placements.
In order to stem the tide of the deinstitutionalization movement, which has become an ideological juggernaut over the years, it is important to recognize that the movement has taken root not only at the state level but the federal level as well. To that extent, getting rid of the Settings Rule appears to be a good first step in restoring real choice to disabled individuals and their families in where and how they live.
State Commission vilifies institutions for people with developmental disabilities and demands an apology from the governor
A state commission established in 2023 to study the history of institutions for the developmentally disabled and mentally ill in Massachusetts has issued a final report which, as expected, almost completely vilifies those facilities.
The report by the Massachusetts Special Commission on State Institutions, which is dated May 25, paints an overwhelmingly negative and untrue picture of the history of the institutions, often couched in extreme terms. The report only briefly mentions the dramatic improvements in those centers for the developmentally disabled that occurred starting in the 1970s.
We repeatedly predicted that the Commission would examine only the history of the institutions prior to the 1980s when those facilities were notorious for abuse, neglect and poor conditions.
Our concern has been, and now remains, that opponents of the Wrentham and Hogan Intermediate Care Facilities (ICFs), the state’s two remaining congregate care centers for people with developmental disabilities, will use the report as justification for pushing for the closure of the facilities.
Notably, the report demands a formal apology from the governor, who, it claims, “must acknowledge the enormity of the legacy and harm of mass institutionalization that reverberates today.”
But what about the improvements that were made in institutional care starting in the 1970s in Massachusetts under the landmark Ricci v. Okin class action lawsuit? The late U.S. District Court Judge Joseph L. Tauro, who oversaw the consent decree in that case, said in 1993 that the care in the institutions was by then “second to none anywhere in the world.”
Isn’t that improvement also part of the legacy of institutionalization in Massachusetts? Should Governor Healey apologize for that?
What about the high federal standards that Wrentham and Hogan meet today? And what about the families that are fighting to keep Wrentham and Hogan open as the state pursues a policy of letting Wrentham and Hogan die by attrition?
Also, what about the legacy of deinstitutionalization, which the report does not criticize, but which has also caused much harm?
While the report has tried to make a positive contribution in calling for making public the historical records of the care of residents of institutions in Massachusetts, the report appears to assume that those records contain only damning accounts of that care. That is, of course, not true; but, the report implies that the purpose of providing public access to the records is to reveal “atrocities” committed in the institutions. As the report states:
By hiding a story of mass human rights abuses, the Commonwealth is preventing society from engaging in a full reckoning with the atrocities that have been inflicted on disabled people throughout our history.
Sensational claims concerning closed facilities
The report also makes a number of sensational claims that lack evidence of what it alleges are shocking activities that have taken place on the campuses of closed facilities. Among those allegations, for which the report doesn’t provide any details, are that some unidentified campuses have been used for pornographic photo shoots and “white supremacist celebrations.”
As the report puts it:
At their most offensive, (former institutional) sites have been used for pornographic photo shoots, white supremacist celebrations, community festivals, and amusement parks that would never be tolerated at similar sites of significant human rights abuses in Massachusetts or America.
I have not been able to find any references on line to pornographic photo shoots on the campuses of closed institutions. As noted, the Commission report provided no examples of it.
Brandeis University’s student newspaper, The Justice, reported that graffiti featuring markings of Neo-Nazi groups has been discovered on the walls of one of the buildings on the campus of the former Fernald Developmental Center. But the Waltham Police Department stated that “there are no known organized hate groups operating in the area.”
So, while vandalism at the former Fernald Center has been an ongoing issue, there is no information I could find that refers to white supremacist celebrations being held there. The Commission also provided no examples of amusement parks on the campuses of former institutions.
The amusement park reference might be to the development by the City of Waltham of a portion of the Fernald campus as a memorial park and “universally accessible” playground, with an electric train, a mini golf course, and a spray park “that would make it the largest disability-accessible park in New England.” The park received two awards from the Massachusetts Recreation and Parks Association in February for its design and commercial partnership.
In addition, the Commission report includes what appears to be a false claim that there is a threat of a “revival of large-scale institutionalizations” in Massachusetts. It provides no evidence for the claim.
While the report doesn’t appear to specifically recommend the closure Wrentham or Hogan, it claims institutionalization “stubbornly remains.” The statement appears to be an indirect call for the closure of facilities such as Wrentham and Hogan. If the report is referring only to institutions for the mentally ill as stubbornly remaining, it doesn’t specify that distinction.
The report’s full statement on this issue is:
Precisely because the public is largely unaware of the countless tragedies inflicted by these institutions—tragedies told in this hidden history—people with disabilities today face very-real threats by the non-disabled including the revival of large-scale institutionalizations where the practice has been abolished, and its expansion where it stubbornly remains.
Rights abuses were not ‘overlooked’
In its coverage of the Commission’s report, GBH News, a Boston-based National Public Radio affiliate and one of the more fervent critics of the former Fernald Center, quoted Alex Green, vice-chair of the Commission and one of the chief proponents of the Commission’s creation. According to GBH News, Green stated:
I think that there’s a massive ongoing act of erasure happening about one of the most significant and overlooked human rights tragedies in the history of this state and the country. It [the report] really gives us a devastatingly personal sense of how the state turned the idea of care into a much darker thing that harmed a lot of people.”
But the Ricci class action case and Judge Tauro’s involvement clearly show that those human rights abuses were not overlooked. They were addressed and corrected.
Moreover, even with regard to the early history of institutional care in Massachusetts, the Commission’s report appears to be uniformly negative when, in reality, not everything was necessarily bad about those early years.
As Ingrid Grenon noted in her book, “From One Century to the Next: A history of Wrentham State School and the Institutional Model in Massachusetts,” the 1920s was a period when the then Wrentham State School, under the direction of its first superintendent, George Wallace, had a caring staff and administration, and offered a multitude of services and activities for the residents.
Grenon’s book points out that Wrentham, like other similar institutions that sprang up in this state and around the country, entered a long decline, starting in the 1930s as it became more and more overcrowded and understaffed. The state schools in Massachusetts were finally brought back to excellence as a result of the Ricci v. Okin class action litigation.
But the Special Commission has this to say about those early years of institutional care in Massachusetts:
…Massachusetts developed, sustained, and exported many of the first legal, medical, educational, charitable, and social systems for placing people with intellectual, developmental, and mental health disabilities in institutions: practices widely understood for more than 75 years to be a violation of fundamental human rights. (my emphasis)
In sum, we would again emphasize that the report appears to have made some positive contributions with regard to the need for public access to records and for the identification of unmarked graves on the sites of the former institutions in Massachusetts.
But it is unfortunate that the report repeatedly leaps from those issues to unwarranted condemnations of the role and history of institutional care in the state. It’s clear from the report that the Commission did not closely examine the full history.
As we’ve previously noted, Green and other proponents of the Commission made statements prior to serving on the Commission that were almost uniformly negative about care at the former Fernald Center, in particular.
That negative agenda appears to have muddied the positive contribution that the report has tried to make with regard to the role of institutional care in Massachusetts.
State administrative judge dismisses mother’s appeal of termination of services in state-run apartment program
In a decision we think may set a bad precedent, a state administrative judge has dismissed a mother’s appeal of an abrupt cutoff of services last year by the Department of Developmental Services (DDS) in a staffed apartment for the mother’s intellectually disabled daughter.
In a three-page decision that took more than three months to issue, state Division of Administrative Law Appeals (DALA) Magistrate Kenneth Forton concluded on May 9 that Jeanne Cappuccio’s appeal of the then impending closure of the Andover apartment on April 1, 2024, was moot because she had taken her daughter Mia home with her shortly before the services in the apartment were terminated.
“Taking Mia home mooted any objection to her move that DALA could even possibly review,” Forton’s decision stated. “DALA is only able to order DDS to delay or stop a transfer, it cannot prevent a move that occurred a year ago.”
However, Jeanne contended that the matter was not moot because DDS had failed to allow her then timely appeal of the shutdown to proceed. Her appeal had been filed in March 2024 under DDS regulations that allow appeals to DALA of proposed transfers of clients from one residence to another.
Mia and Jeanne Cappuccio
Jeanne argued that in a violation of the regulations, DDS had declined to forward her original March 26, 2024, appeal of the impending termination to DALA for adjudication. As a result, we helped Jeanne refile her appeal directly to DALA on December 6. We also helped Jeanne in submitting a written objection to a motion filed by DDS on January 27 to dismiss her December appeal.
Jeanne maintained that due to the imminent termination of the services in the apartment as of March 2024, she had no choice but to bring her daughter home after DDS blocked her appeal from proceeding. She contended, however, that even today, DALA could order DDS to find a new, suitable location for Mia.
Since April 2024, Mia has been living at home with Jeanne and her husband Tom. But Jeanne said she and Tom are “overwhelmed with the challenges of providing Mia’s intensive supports and maintaining our commitments to our full time jobs.” She said DDS has not provided Mia with physical therapy nursing, or counseling services for the past year.
Following Forton’s May 9 dismissal of Jeanne’s December appeal, she asked Forton on May 20 for reconsideration of his decision, arguing that it contained significant factual errors. Forton denied her request for reconsideration without explanation the same day we filed it.
In both her March 2024 and December appeals, Jeanne alleged that the cutoff of services was done in retaliation for her complaint that Mia had been emotionally abused by staff in the apartment.
In Jeanne’s appeals and plea for reconsideration, she urged Forton to order DDS to provide an alternative residential location for Mia “that meets her best interest” as required by the DDS statute covering transfers. She added that, “A failure to do so simply rewards DDS for failing to comply with the statute and regulations that specified a timely process for appeal.”
Jeanne further argued that dismissing her appeal would allow DDS to evict disabled individuals from their homes by simply withdrawing all supports, without providing due process or alternative placements that provide services. This would set a precedent that would contradict the intent of the statutory framework governing the provision of services to persons with intellectual and developmental disabilities (I/DD).
Apartment program did not live up to promises
As we reported in February, DDS had initially proposed what was described as a novel residential program for both Mia and another woman who had both been subjected to poor care and conditions in a previous group home.
The Department proposed to rent an apartment in Andover for the women, and staff the new residence with direct care workers. Those workers would be employees of Northeast Residential Services (NRS), a division of DDS, which operates group homes in DDS’s northeast region of the state. It was to be an apartment where the two women could lead independent lives while still receiving Intensive Support Services from DDS.
But Jeanne maintains that far from providing better care than the previous group home had provided, DDS never appeared to be committed to making the new residential program work.
Jeanne said that in an incident on February 20, 2024, while she was talking with Mia over the phone, she overheard a staff member begin shouting at her daughter to get back in her room. Her daughter had been attempting to do her laundry, but the staff member would not let her do it. She said her daughter began crying.
Unable, after calling DDS and then visiting the apartment to get any answers, Jeanne filed a complaint with the Disabled Persons Protection Commission (DPPC).
On February 23, 2024, just three days later, NRS informed Jeanne that the residential program would be terminated in roughly a month. This was another violation of the regulations, which require a 45-day notice of proposed transfers.
Meanwhile, on the same day that NRS informed Jeanne of the termination of the program, DDS’s legal division petitioned in Middlesex Probate Court to limit or possibly eliminate Jeanne’s and Tom’s co-guardianship of Mia. That action had come out of the blue, Jeanne said. She said that DDS eventually withdraw its petition, but only after she had initiated discovery proceedings in the case.
Magistrate improperly quoted from regulatory provision by omitting a key phrase
Among the errors we cited in Forton’s decision were that he had left out five key words in citing the transfer regulations and thereby concluding that the regulations didn’t apply to Jeanne’s case.
In addition to wrongly concluding that Jeanne’s appeal was moot, Forton stated that one of the options suggested by DDS to Jeanne in March 2024 was to have Mia remain in the apartment and use a different service provider. He then stated that under the transfer regulations, “A change in the identity of the provider… involving no move, shall not be deemed a transfer.”
But while the regulations do state that a change in the identity of the provider shall not be deemed a transfer if there is no move, the provision in question specifically states that the change in the identity of the provider would have to occur “pursuant to a contract award.”
Thus, simply suggesting that a resident of a facility slated for closure can remain in the same location if the resident is able to find a new provider does not constitute compliance with the regulations. DDS, in that circumstance, must not only have identified the new provider, but must have signed a contract with that provider.
In Mia’s case, however, there was no contract awarded, and, in fact, a new provider had not even been identified.
The full regulatory provision that Forton partially quoted states the following:
…the change in the identity of the provider pursuant to a contract award involving no move, shall not be deemed a transfer…(Emphasis added)
In quoting the provision, Forton left out the critically important phrase “pursuant to a contract award.” Leaving out that phrase completely altered the meaning of the provision.
Thus, the magistrate’s finding that there was no transfer because DDS had offered Mia the option of staying in the apartment was incorrect. Jeanne ultimately took Mia home because DDS would not allow her timely appeal to DALA to proceed in March 2024, and because DDS had not identified a new provider, much less awarded a contract to one, before terminating services.
Jeanne argued that the question for DALA to decide in this case, and in all such appeals brought under the transfer regulations, is whether or not a proposed transfer is appropriate. She cited the precedent of the closure of the former Fernald Developmental Center in 2014. In that case, DDS gave notice that Fernald was going to be closed and the services there terminated.
The difference between the Fernald situation and Jeanne’s and Mia’s case is that DDS allowed the residents in the Fernald case to appeal to DALA under the transfer regulations prior to the cutoff of services.
Ultimately, this DALA decision was disappointing, not only because it went against Jeanne and Mia, but because it did not appear to seriously consider Jeanne’s arguments.
Moreover, in stating that the matter was now moot, the magistrate’s decision appears to have rewarded DDS for having violated the transfer regulations by preventing Jeanne’s timely appeal from proceeding.
Had DDS properly allowed the appeal to proceed in March 2024, it would have stopped the imminent termination of services in the apartment pending the outcome of that original appeal.
COFAR blog 