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As serious care issues remain under a new DDS-funded provider, a mother calls for systemic change
More than five years ago, Mary Phaneuf thought the serious neglect her foster son, Timothy Cheeks, had experienced in his group home in East Longmeadow was finally coming to an end.
In 2019, the Department of Developmental Services (DDS) took the rare step of terminating a contract with the Center for Human Development (CHD) to operate two residences, in one of which Tim was living. Among other problems, CHD, a DDS-funded corporate provider, had failed to take Tim to his doctor’s and dentist’s appointments for seven years even though Tim has a congenital heart defect.
COFAR’s blog posts in 2019 (here and here) concerning Mary’s allegations, and subsequent coverage by The Springfield Republican, led to a DDS investigation of CHD. The contract termination came after the investigation by DDS’s Bureau of Program Integrity found “potential systemic issues” of poor care throughout CHD’s residences.
Timothy Cheeks with his foster sisters, (from left) Nicole Phaneuf Sweeney, Lauren Phaneuf West, and Jessica Phaneuf Szczepanek.
DDS subsequently selected a new provider, the MHA (Mental Health Association), to replace CHD, and Tim was moved into an MHA home in 2019. Tim, 46, has an intellectual disability and Down Syndrome.
In September of this year, Mary got back in touch with us to let us know that many of the same issues that had existed under CHD began to reemerge under MHA.
In the early months, Tim’s care did improve significantly in the new residence. The new staff were communicative, attentive, and committed, Mary said. But as the COVID-19 crisis unfolded and management changes occurred, care started to slip, she said.
Nevertheless, Mary said she remains hopeful that the ongoing case will spark the systemic changes that she contends are necessary to permanently correct the problems.
“This is not to assign blame, but to advocate for change,” Mary wrote. “Many of the staff at MHA and DDS care deeply about the people they serve. The problem lies in a system that too often allows serious issues to repeat due to gaps in communication, training, and oversight.”
Since MHA has been in charge, the problems alleged by Mary include the following:
- In spring 2024, Tim’s Social Security benefits were terminated because of unreported income from his estranged biological father — a situation not caused by MHA, but requiring their timely response. However, the provider failed to meet the required federal timelines for an expedited appeal. As a result, Tim was without benefits for more than 18 months, leaving his personal funds depleted. His benefits were finally restored in October of this year.
- During the same period, Tim’s MassHealth insurance lapsed, interrupting access to medical and behavioral health services. The lapse occurred despite reminder emails from both the Behavioral Health Network (BHN), the provider of Tim’s counseling services, and DDS to MHA to renew Tim’s coverage. Coverage was only reinstated after family intervention.
- In September of this year, Mary discovered, for a second time, that Tim’s feet were red, swollen, and painful, with overgrown nails and large callouses that made it difficult for him to wear shoes. Although a podiatrist had recommended to MHA in February that Tim have follow-up visits every three months and receive prescribed twice-daily foot medication, he was not seen for seven months. Also, it appeared his medications were not being administered consistently.
- MHA staff initially falsely told Mary they stopped taking Tim to his podiatrist because the podiatrist had stopped accepting MassHealth. That claim was later refuted directly by the doctor’s office. This neglect violated Tim’s Individual Service Plan (ISP), which had specified podiatry care and weekly nursing visits for him, Mary said.
- In August 2024, over a year prior to her report in September of this year, Mary first reported to MHA and Tim’s DDS service coordinator that Tim’s feet were in bad shape. She showed them a photo of his feet with large callouses, toenails grown so long they curled over the top of his toes and a large fungal growth on the bottom of one foot. Mary said that after her 2024 report, DDS included Tim’s footcare in his ISP, and MHA committed to a weekly nurse visit to check his feet. “One year later it all fell apart,” Mary said.
- In October 2022, MHA staff gave another client’s high blood pressure and anti-psychotic medications to Tim. Although Mary was told Tim was “fine,” she arrived at the hospital to find him heavily sedated and disoriented. The Disabled Persons Protection Commission (DPPC) later substantiated the incident as abuse.
- In both 2024 and 2025, Tim’s behavioral counseling at Behavioral Health Network (BHN) was suspended due to missed appointments and unreturned calls to the group home. At one point, Mary was told Tim’s appointments were missed because his counselor was hospitalized — a statement BHN later confirmed was untrue. These missed sessions deeply affected Tim’s emotional stability and confidence, Mary said.
- In August 2024, Mary learned from Tim’s day program that MHA had failed to pay for or register him for day program activities for over a year, and that his funds for those activities had been depleted. Mary’s family covered the costs to prevent disruptions in his daily routine. MHA did fix that problem. But Mary said that if she hadn’t discovered it, MHA would have never known about it. “For a whole year those activities, so important for Tim’s quality of life, fell by the wayside,” she said.
Service coordinator supports allegations
In an email on September 3, Tim’s DDS service coordinator, suggested to Mary that she contact the DPPC regarding the alleged neglect of Tim’s feet and the lapse in his health insurance.
Having viewed the photos that Mary had sent him, the service coordinator wrote that an investigation by either the DPPC or DDS “will put a fire under the feet of MHA to ensure that they are following the podiatry/Dr’s orders, and making sure he gets the proper podiatry care. What you have sent in the pictures is unacceptable.” [Note: We are not publishing the photos due to their graphic nature.]
The service coordinator also stated, “Please don’t worry about anyone ‘getting in trouble’ at MHA. They need to do their jobs accordingly and also be truthful about the care of the people in their services.” He also referred to “Tim not having health insurance for 5 months,” saying, “That is simply not okay.”
Requests and promises of investigation of MHA
At our suggestion, Mary emailed the director of the DDS Bureau of Program Integrity on October 3 to let her know of the allegations involving MHA and to request another investigation. The Bureau had conducted the previous investigation of CHD in 2019. Mary also emailed the DDS Central West regional director and DDS Springfield area director, requesting an investigation.
Those officials responded to Mary the same day, saying they intended to look into the concerns she raised.
It is certainly both frustrating and devastating to Mary and her family to learn that even after an investigation that resulted in the termination of the provider that was neglecting Tim, similar problems have continued under the new organization selected as the replacement. It is a shame that such a vulnerable client has had to undergo this level of neglect twice, in two different residential settings.
All of this appears to show that DDS did not follow up to determine whether the problems identified by the 2019 investigation had been corrected. That investigation was, by all accounts, comprehensive. It is unfortunately more evidence that the group home system in Massachusetts is dysfunctional, and DDS does not have a handle on it.
Nevertheless, Mary said she believes that DDS and its providers are capable of providing good care and ensuring high staff morale and low staff turnover. She maintained that, “The ultimate goal is simple: to create a system where every person with a developmental disability receives consistent, compassionate, and competent care — and where families, providers, and the state work together to make that goal a reality.”
Mary noted that Tim loves music, his day program, and spending time with his family. “His laughter and resilience remind me why this work — ensuring quality care and dignity for people with disabilities — matters so deeply.” She said she remains hopeful that, “by working with MHA and DDS, we can make progress toward systemic improvement.”
We certainly hope that is the case.
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.
UPDATE: Second parent comes forward regarding poor care in a state-run, NRS group home
We have renewed our call for an investigation by the Department of Developmental Services (DDS) of its state-run group home system in the northeast region of the state after a second parent has contacted us with concerns about care in an NRS (Northeast Residential Services) home.
On Wednesday, the mother of a resident of a second NRS home voiced concerns similar to those of Jeannine MacKinnon, who was forced to bring her son Zachary home after three years of substandard care in an NRS home in Peabody. We first reported about Jeannine’s case on Tuesday.
NRS is a division of DDS that operates group homes in the northeast region of the state.
While state-run group homes in Massachusetts have better compensated and trained staff on average than do homes operated by corporate providers to DDS, we have found that problems can develop in any type of care facility.
In an email, the second parent, who asked that her name not be used, wrote that her son was admitted twice in recent months to hospital ICUs, first for internal stomach bleeding and later for severe asthma exacerbations. She said that in the second case, the staff had failed to seek medical attention, despite her repeated requests.
The parent also said her son has suffered multiple bruises and other injuries in the residence. The Disabled Persons Protection Commission has been contacted three times.
In addition, the parent said she has received no reply from the DDS Human Rights Office to her concerns about the situation. She said she wishes she could bring her son home, but is unable to care for him due to his aggressive behaviors.
This parent also stated in a subsequent message to me that DDS has not provided her with any other placement options, and that her son has been living in the facility for 18 months.
We originally contacted DDS Commissioner Sarah Peterson on behalf of Jeannine MacKinnon and her son on May 6, and asked that DDS conduct an investigation of the NRS system. Peterson responded that while she could not comment on individual cases, she had reviewed our email and “followed up with the team and will continue to do so.” She did not explicitly say that she would order an investigation.
In a follow-up email yesterday (May 29) to Peterson, I noted that the account from the second parent “deepens our concerns, and bolsters our call for DDS to carry out a comprehensive investigation into the NRS system.”
State-run group homes in Massachusetts have continued to lose residents under an administration policy that is letting them die by attrition.
As with the Wrentham and Hogan Intermediate Care Facilities (ICFs), DDS does not offer state-run residences as an option to persons seeking residential placements, but rather seeks placements for those individuals primarily in corporate provider-run group homes. As a result of this policy, many people with developmental disabilities end up waiting for months or years for such placements.
We hope it isn’t the case that the administration is also allowing conditions in its state-run group homes to deteriorate.
DDS failed to act on concerns about care in a state-operated group home
We have seen substantial evidence over the years that the Department of Developmental Services’ (DDS) state-operated group homes have better trained and compensated staff on average than staff of corporate provider-run homes.
But problems can still plague state-run facilities if the Department removes resources from them, fails to ensure that staff are properly supervised, or fails to nurture a culture of caring.
If we see evidence of any of those things happening, we think it’s important that DDS investigate immediately in order to prevent the situation from spreading and possibly damaging a vital part of the system of care.
One apparent and hopefully rare example of those problems is alleged to have occurred in a Northeastern Regional Services (NRS) home in Peabody. Jeannine MacKinnon claims the staff there provided such poor care to her son Zachary that she finally had to take him home in January. Zac is 32, autistic and non-verbal.
NRS is a division of DDS that operates group homes in the northeast region of the state.
In this case, DDS doesn’t appear to have made serious efforts to respond to Jeannine’s many concerns over months or even years about serious lapses in care. Departmental officials repeatedly assured her they would look into her concerns, but problems persisted without indications that any solutions were tried or implemented.
Zac MacKinnon
Jeannine said that while Zac was in the group home, NRS officials criticized her as “a combative mother.”
Unfortunately, bringing Zac home hasn’t been a viable solution for Jeannine. Jeannine, who is disabled, said she can’t sustain his care in her home. Zac needs 24-7 care, elopes, and has seizures.
On May 6, we wrote to DDS Commissioner Sarah Peterson, urging her to act quickly to locate a suitable alternative residential location for Zac and to relieve Jeannine of the burden of continuing to try to care for her son on her own. We also requested that DDS investigate the NRS group home system in light of the problems Jeannine has identified in the Peabody residence.
Peterson responded to us a few days later, saying that while she “could not comment or provide specifics related to any individual cases, please know that I have reviewed your email, followed up with the team and will continue to do so.”
In fact, Jeannine said that earlier this month, DDS provided her with two possible alternative residences for Zac. She said she has had a “good conversation” with the corporate provider operating one of those homes.
Bruises and infections
At the NRS group home, Jeannine said, she often found her son “covered in bruises and covered with MRSA infections” and receiving no medical treatment. She sent us photos of those bruises and infections, many of which would be too graphic for us to publish.
Last month, DDS notified Jeannine it was investigating many of her claims, including allegations of a broken rib, bites and scratches, bruising, and skin infections on Zac. DDS also said it would investigate allegations that Zac was regularly assaulted by another resident of the group home and was locked out of his bedroom during the day by the staff so that he couldn’t escape from the other resident.
Another allegation of Jeannine’s was that Zac was forced by the staff to wear a confining bodysuit during that day that was zipped from behind. While the suit was intended to keep Zac from self-injurious behaviors, it was only supposed to be used at night.
While the investigation by the Department of Jeannine’s specific allegations is welcome, it is not clear that it will involve a systematic review of NRS’s management and oversight of its residences.
The alleged problems in the NRS home, which are documented in emails to DDS, are discussed below. We would note that DDS officials did not dispute any of the concerns that Jeannine raised with them.
Attacked and kept from bedroom
Jeannine said that among other problems, Zac had been subject for months to physical assaults by another resident in the NRS home, and that for some reason, the staff wouldn’t allow him to escape from those attacks by going to his bedroom during the day. She said he was forbidden for three years from entering his room until bedtime.
Despite repeated complaints from Jeannine to DDS about the situation, nothing appears to have ever been done about it.
In one email exchange about that problem, Jeannine wrote to an investigator with the Disabled Persons Protection Commission (DPPC) on August 11, 2024, saying, “I don’t want to repeat myself, but the group home called me tonight to say (Zac) was attacked again! The group home staff is short-staffed every weekend leaving my son more at risk.”
Two days later, on August 13, Jeannine contacted her son’s DDS service coordinator, the supervisor of the group home, and a clinical therapist, saying, “My son does not even have access to his bedroom to flee from sick situations.”
That same day, which was a Tuesday, Zac’s DDS service coordinator responded, suggesting scheduling a meeting with Jeannine either for the following week or the week after that. “I am very sorry you don’t feel like we’re helping you with Zac,” the service coordinator wrote, not specifically acknowledging that a problem existed.
A month later, on September 10, Jeannine emailed an occupational therapist at Mass General Hospital, who was involved in her son’s care. “What is going to be done so that Zac can access his bedroom?” she asked. “They know he (the other resident) attacks Zac. For whatever reason they need to be separated.” The occupational therapist responded that Jeannine should contact the DDS ombudsman about the issue.
Photos of bruises and infections
On October 10, 2022, Jeannine sent photos of bruises and skin infections on her son to Bonnie Hungler, DDS Metro North area director. Regarding the bruises on Zac’s arm, Jeannine said she had been told Zac had fallen off a couch the previous Saturday, but she didn’t believe the explanation.
Two days later, Hungler responded, saying, “I am very sorry to see the significant bruising.” She said the injuries had been reported to the DPPC and that she intended to speak with the NRS director, ”to discuss and see what his team has learned after speaking with staff on shift.“
Hungler also said she expected that DDS would probably investigate the incident. The DPPC did refer the investigation to DDS, which concluded in a 1½ page report that abuse was unsubstantiated. Only five people were interviewed in the investigation, in addition to Jeannine herself.
In August 2024, almost two years later, Jeannine was still sending photos of her son’s bruises and infections to DDS and other officials, and apparently receiving little if any response, and no solutions.
On August 6, 2024, Jeannine wrote to an administrator at Jewish Family and Children’s Service. “I am sharing pictures of what I can only call abuse and neglect on my son in the care of the state run group home he is in,” Jeannine wrote. In response, the JFCaS administrator wrote that the photos “are concerning,” and stated that the organization had reported the matter to the DPPC.
Forced to wear bodysuit
As noted, Jeannine maintains that the group home staff began forcing her son, early after he moved in, to wear a bodysuit that zipped up in the back to prevent potentially self-injurious behaviors. But while the suit had been approved for use at night, it was not supposed to be put on him during the day.
Yet, the group home staff was putting the suit on him at all times, Jeannine said, and her son began injuring himself attempting to get it off. In October 2022, after unsuccessfully appealing to NRS, Jeannine wrote to then DDS Commissioner Jane Ryder and sent her a photo of a wound on her son’s back. She said a buckle on the bodysuit had caused the laceration on Zac’s back.
In her message to Ryder, Jeannine discussed other injuries as well. “My son is non-verbal and has no way of protecting himself,” she wrote. “He has no way to take it (the suit) off so he wets or soils himself and sits in his own urine eating away at his skin while he waits for someone to take care of him.”
The following day, Ryder responded to Jeannine, saying that, “I feel horrible about everything you and Zac have been through. My staff will continue to ensure that we are doing everything to make sure Zac is safe.”
Ryder added that, “NRS has acknowledged the failure to notify you in a timely manner (about injuries) and this has been addressed with staff. Your service coordinator will be visiting the home and will be continuing to monitor.“ But Jeannine said no improvements in her son’s care resulted from her contact with Ryder.
Staff wouldn’t use communication device to prevent toileting accidents
In August of last year, Jeannine emailed Zac’s service coordinator and NRS officials, saying that the group home manager was not allowing Zac to use his IPad to communicate his need to use the toilet. “He (Zac) has no way to tell anyone (of his needs) without the constant use and consistency of his IPad,” Jeannine wrote. She added that she witnessed staff allow Zac to urinate in his pants during a medical appointment rather than providing him with his IPad, which was in his backpack.
Approximately 10 months before that, in October 2023, Jeannine had emailed a previous service coordinator, stating that while being driven by staff to a medical appointment which Jeannine attended, Zac had had a urinary accident. She took him into the bathroom at the medical center to change his clothing, but discovered that the staff had packed previously soiled clothing in his backpack. “This entire day has started off really bad, when it could have gone a lot smoother if things were done properly,” she wrote.
No day program and no residential alternatives
Throughout Zac’s three-year stay at the NRS group home, he was not provided with a day program. In November 2, 2023, James Bath, director of family medicine at the Mass. General Hospital Lurie Center, wrote a letter stating that Zac needed a day program in order to provide him with “regular activity, structure, and social interaction,” which he was not getting in the group home.
Dr. Bath noted that the lack of meaningful activities and social interaction in the group home was directly causing symptoms of mild depression in Zac.
Until now, Jeannine maintains, DDS had failed to provide her with a residential alternative for Zac even though she had asked many times that one be found for him.
Thorough investigation needed
It’s not often that we would concur with an assessment that a state-operated group home is not a suitable residential setting due to substandard care. We hope Commissioner Peterson takes this matter seriously and investigates this situation thoroughly.
DDS’s state-operated group home network is an integral piece of the total continuum of care for people with intellectual and developmental disabilities. The network has a reputation for providing excellent care from staff who are well trained and are motivated and conscientious.
If things are starting to slip in any portion of that network, DDS needs to act quickly to determine the cause of the problems and make the necessary corrections.
Refiled Supported Decision Making bill contains all of the same flaws as its predecessor
Last year, we worked to stop a flawed bill in the state Legislature that would have introduced Supported Decision Making (SDM) in Massachusetts.
Fortunately, that legislation died at the end of the previous two-year legislative session when two separate committees declined to release identical versions of the bill to the House and Senate floors.
The bad news is that not only has the legislation not surprisingly now been refiled in the new legislative session, but everything we objected to last year has remained in the bill. None of our proposed changes to the legislation that would possibly have made it workable have been adopted in the new draft.
The refiled bill, H.261, is sponsored by Representatives Jay Livingstone and Michael Finn. Livingstone is House chair of the Children, Families, and Persons with Disabilities Committee, and is familiar with our objections to last year’s version of the bill.
Last year, the Children and Families Committee reported the legislation favorably and sent one version of it to the Rules Committee and another version to the House Ways and Means Committee. Neither of those two latter committees acted on the measure, however, and it died at the end of the session.
However, the legislation is again before the Children and Families Committee, and appears to be identical to last year’s version. No doubt, the Children and Families Committee, which has the same co-chairs as last session, will report the bill favorably again in this session.
In the Senate, S. 155, refiled by Senator Joan Lovely, contains much of the same language as H. 261. The Senate bill is also now before the Children and Families Committee.
Mass. Bankers Association still involved
As was the case with the final version of the legislation last year, the Massachusetts Bankers Association would be involved in the implementation of SDM, under this year’s legislation. The lobbying organization would be involved in developing a training program on the rights and obligations of SDM supporters, and would be appointed to an SDM commission that would study the feasibility of a state registry of all existing SDM agreements in the state.
Without safeguards, SDM appears in our view to hold a potential to overturn guardianships of persons with intellectual and developmental disabilities (I/DD).
The legislation would authorize written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters would provide those individuals with “decision-making assistance” about their care and finances.
However, “incapacitation” is not defined in the legislation. Any individual under guardianship is considered under the Probate Code to be incapacitated. The SDM bills do not provide a standard level of capacity of an individual below which SDM would not be feasible.
Under the legislation, the incapacitated individual is labeled “the decision maker.” The legislation, as has always been the case in the past, defines the “decision maker” in an SDM arrangement only as “an adult who seeks to execute, or has executed, a supported decision-making agreement with one or more supporters.”
There are no further qualifications for being a decision maker. There are no distinctions among levels of disability. Thus, there is no consideration in the legislation as to whether persons with low levels of cognitive functioning are capable of making and appreciating life-altering decisions.
The legislation would also introduce conflicts between SDM supporters and guardians; does not direct the probate court to resolve those conflicts; and does not direct the Disabled Persons Protection Commission (DPPC) to enforce a provision against coercion in signing SDM agreements. The legislation also does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to the Department of Developmental Services (DDS).
Additional burden of proof
As we have pointed out to Representative Livingstone and other legislators, the SDM legislation would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian. Thus, we think that this legislation may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.
The legislation specifically would require anyone petitioning in probate court to become a guardian to state why a more limited guardianship or an SDM agreement was “inappropriate.” (emphasis added)
That additional burden requires a change to the Massachusetts Uniform Probate Code (M.G.L. c. 190B). So, while proponents of SDM often insist that the process of entering into SDM agreements is completely voluntary and informal, there is nothing voluntary about the additional burden the legislation would place on persons petitioning to become guardians of family members with I/DD.
And that raises the question whether signing an SDM agreement is really voluntary for every potential “decision maker.”
Is SDM really voluntary or is that wishful thinking?
Much of the verbiage in the SDM legislation and among proponents of SDM appears to be wishful thinking, particularly, that the process of entering into SDM arrangements is completely voluntary.
The legislation states, for instance, that “evidence of undue influence or coercion in the creation or signing of a supported decision-making agreement shall render the supported decision-making agreement invalid.”
But who would determine whether there was undue coercion in those cases, and how would it be enforced? The legislation doesn’t answer those questions.
Moreover, the bill defines “coercion” as “the use of force or threats to persuade someone to do something.” But people with I/DD often don’t have the level of skepticism or other cognitive defense mechanisms to prevent what may be much more subtle forms of coercion than outright threats or force.
Other wishful-thinking provisions in the legislation include a statement that SDM supporters must “Act honestly, diligently, and in good faith.” Also, that supporters must “Act within the scope identified by the decision-maker,” and that they must “Support and implement the direction, will, and preferences of the decision-maker. “
It is impossible to enforce those provisions because it is often impossible to know in many cases what the will or preferences are of persons who don’t fully understand the choices they are being asked to make.
Similarly wishful is a statement in the legislation that “(SDM) supporters shall not make decisions for the decision-maker.” It is meaningless to assume in every case that a person with ID is meaningfully making key decisions.
Fraud and abuse enforcement provisions are weak
The SDM legislation does appear to recognize that fraud and abuse could be at play in SDM arrangements because it specifically authorizes the DPPC and DDS to petition the probate court to revoke or suspend SDM supporters “on the grounds of abuse, neglect, exploitation or failure of the supporter to follow their roles and responsibilities resulting in serious physical, emotional, or financial harm to the decision-maker…” (emphasis added)
The legislation further states that “a person who has cause to believe that the decision maker is being abused, neglected or exploited by a supporter, may report the alleged abuse, neglect or exploitation to the DPPC.”
However, the DPPC, in particular, does not have the resources to conduct more than a small percentage of abuse and neglect investigations of caretakers. As a result, the DPPC refers most abuse investigations to DDS, which as we have pointed out, raises its own set of conflict-of-interest issues.
As a result, it seems unlikely that either the DPPC or DDS would petition the probate court to revoke or suspend SDM supporters unless there were overwhelming evidence of such abuse.
Seeking to prevent guardianships prior to adulthood
As was the case with previous versions of the legislation, the current House and Senate bills would require the state to promulgate regulations to inform secondary education students of “the availability of SDM as an alternative to adult guardianship.”
So, the intent here appears to be to persuade parents to enter their children with developmental disabilities into SDM arrangements on their 18th birthdays when parents would normally petition for guardianship. The legislation specifically states that at the first IEP (Individual Education Plan) meeting after a student has turned 16, the IEP team must “inform the student and their family or guardian, of the availability of supported decision-making agreements as an alternative to guardianship and conservatorship.”
In addition, the IEP team would be required to assist the child and their family or guardian “in locating resources to assist in establishing a supported decision-making plan if the child and their family or guardian are interested in supported decision-making.”
This is concerning to us because it appears to be intended to discourage families from seeking guardianship when their disabled children turn 18. That, in our view, would be a step toward eliminating guardianship altogether.
Records-sharing requirement raises concern
As was the case previously, the current legislation gives individual SDM supporters the authority to obtain confidential psychological and medical information about the disabled individual, and then requires them to keep that information confidential from others.
That leads to a question: If the disabled individual also has a guardian, why would SDM supporters with no formal relationship to the person also need access to those records? And, if one or more of those supporters was to find something concerning in the records, would they be required to keep that information from the guardian due to the confidentiality requirement?
Weak conflict-of-interest provision
The newly filed legislation does not improve on what was a weak provision in previous SDM legislation regarding a potential conflict of interest that arises when SDM supporters are also employees of DDS-funded group home providers.
The legislation states that:
A supporter shall not participate in any life decision in which they have a conflict of interest. This includes, but is not limited to, any decision in which the supporter, his or her immediate family or partner, a business organization in which he or she is serving as officer, director, trustee, partner or employee has a financial interest or other direct and substantial interest in the outcome.
Such a provision is better than nothing. But even under this provision, an employee of a provider serving the individual could nevertheless serve as an SDM supporter and participate in life decisions in which the provider doesn’t have a direct financial interest. For instance, it could be a possible future financial interest.
In our view, this provision does not fully protect individuals with I/DD against conflicts of interest by supporters. The legislation also doesn’t provide for enforcement of this provision.
We believe employees of providers that offer services to SDM “decision makers” should not be allowed to participate in SDM agreements, period.
We urge people to send emails to the co-chairs of the Children and Families Committee with a link to this post. Ask that the Committee work to finally address our concerns about this legislation.
The Committee co-chairs are Senator Robyn Kennedy at Robyn.Kennedy@masenate.gov, and Rep. Livingstone at Jay.Livingstone@mahouse.gov.
Thanks!
Mother claims retaliation by DDS in termination of ‘poorly run’ residential program for daughter
In July 2023, the Department of Developmental Services (DDS) created what was described as a novel residential program for two intellectually disabled women who had 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 promised by DDS as a long-term solution to the problems associated with the previous placement, and appeared to be a new approach to residential care. It would be a state-run setting that nevertheless promised to be less restrictive and possibly more integrated with the community than would a group home.
It was to be an apartment where the two women could lead independent lives while still receiving Intensive Support Services from DDS.
Mia Cappuccio at Northeastern University recently for Operation House Call, a community-engagement program with medical students that her parents arranged for her to participate in.
But DDS suddenly terminated the program last April, only eight months after it began. Jeanne Cappuccio, the mother of Mia, one of the two roommates, said the termination was an act of retaliation against her for having reported an incident of alleged emotional abuse of Mia by a staff member.
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. Soon after the women moved into the apartment on July 4, 2023, Jeanne said, she realized that only four staff were being made available to the women even though both need care 24/7. As was the case with Mia’s previous group home, few activities were provided in the apartment, she said.
Then, in September 2023, just two months into the program, NRS removed the part-time residential manager of the residence.
That month, Jeanne sent an email to NRS administrators, contending the staff were failing to provide exercise activities for Mia and were allowing Mia to spend her money on junk food even though she had contracted diabetes after engaging in that same behavior in her previous residence.
And, Jeanne wrote, the staff in the new residence were failing to provide information about meals served there; were not working with Mia to participate in household activities such as cleaning her room or doing laundry; and were not providing community-engagement activities for her.
Termination appeared to be an act of retaliation for abuse complaint
According to Jeanne, rather than agreeing to investigate and resolve her concerns, DDS administrators became dismissive and increasingly hostile toward her.
Then came an incident on February 20, 2024, when Jeanne was talking with Mia over the phone and 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.
Jeanne said she tried calling both NRS and DDS to express her concern about the situation. But there was no response, so she drove to apartment. Still unable to get any answers, she filed a complaint with the Disabled Persons Protection Commission (DPPC).
This was not the first such incident involving the staff and Mia. Jeanne said this incident had followed an incident a few months prior in which a staff member, while driving Mia back from her day program, had threatened to kick Mia out of the car and leave her on the side of the road because she was crying.
In addition, staff in the apartment often bullied Mia, according to Jeanne, by doing such things as sending her to her room for being “annoying,” and refusing to let her leave the table after meals until she ate everything on her plate. They often refused to answer questions she had about completing tasks.
On February 21, 2024, a day after Jeanne filed her DPPC complaint, NRS Director Scott Kluge emailed Jeanne, contending she had misrepresented the incident in the laundry room, and accusing Jeanne of “continuing to create a toxic environment for your daughter to live in and for our staff to work in.” As usual, Jeanne said, DDS and NRS were blaming her for shortcomings in care, for which they themselves were responsible.
Kluge, who had not been present in the residence at the time of the laundry incident, maintained that Jeanne’s “behavior was unacceptable,” and then said, “I strongly encourage you to work with the (DDS) Area Office to discuss other service options as clearly this is not working.”
Jeanne contends that Kluge’s February 21 email was a not-too-subtle threat that he might evict Mia from the program in retaliation for her mother’s complaint to the DPPC.
Then, on February 23, 2024, just two days later, Kluge emailed Jeanne to tell her that the residential program would indeed be terminated in roughly a month, and that the cause was a staffing shortage. But Jeanne pointed out that no such shortage was indicated in Mia’s Individual Support Plan (ISP), which had been completed and processed by DDS on February 12, just over a week before. The ISP did not identify any concerns about Mia’s supports or services.
But DDS was not done. On the same day that Kluge announced the termination of the program, DDS’s legal division petitioned in Middlesex Probate Court to limit or possibly eliminate Jeanne’s and her husband Tom’s co-guardianship of Mia. That action had come out of the blue. There was no indication in Mia’s ISP that she didn’t need guardianship from her parents.
Jeanne said that DDS eventually withdraw its petition, but only after she had initiated discovery proceedings against DDS in the case.
Unfortunately, Jeanne’s allegations about the Andover program appear to jibe with complaints we’ve heard from many family members and guardians that both DDS and its corporate providers retaliated against them when they raised concerns about poor care and conditions in DDS-funded programs. (See some examples of that can be found here, here, here, here, and here.)
State Senator Kennedy and other legislators ‘ignored us’
Partly at our suggestion, Jeanne sought support from key state legislators before and after the program termination, particularly from the co-chairs of the Children, Families, and Persons with Disabilities Committee. She did manage to arrange two virtual meetings with a member of the staff of State Senator Robyn Kennedy, Senate chair of the committee.
But Jeanne said that while Kennedy’s aide had promised to set up a meeting with the senator, to which Mia wanted to go, that promise wasn’t kept. She added that she also emailed Representative Jay Livingstone, House chair of the Children and Families Committee, and the rest of the committee members, but never heard back from them.
Pushing ‘self-directed services’
Jeanne contends that in addition to reacting negatively when she raised concerns about Mia’s care in the residence, DDS officials began pushing her to adopt a “self-directed services” model under which Mia would live and receive services in her parents’ home. Under self-direction, the individual or their guardian is given a budget by DDS and is directed to choose their own services and hire their own staff.
Many advocates and family members have expressed frustration that statutory requirements governing self-directed services are not being met by DDS, and that the Department’s allocated budgets are inadequate.
Nevertheless, when Jeanne complained in September 2023 about a lack of activities for Mia and other problems in the residence, DDS Northeast Regional Director Kelly Lawless replied in an email that, “I want to reply to make sure you understand that if you are not satisfied with the services that NRS provides, you should reach out to the Area Office to discuss Self-Direction.”
But Jeanne said that while she did express interest in learning more about self-directed services, DDS never specified a budget for it even though she had asked repeatedly for that information.
Program termination appealed
Jeanne has now launched the second of two administrative appeals of the termination of the apartment program, arguing that it amounted to an eviction of Mia and her roommate without complying with regulations requiring DDS to offer her improved services elsewhere.
Jeanne’s first appeal, which was filed shortly before the program was terminated in March 2024, was quashed by DDS in what appears to have been a violation of a DDS statute and regulation that allow clients to appeal “transfers” from one DDS-funded residence to another. As a result, she refiled her appeal with the state Division of Administrative Law Appeals (DALA) in December.
By way of disclosure, I am acting as Jeanne’s advocate in seeking a DALA hearing in that refiled appeal. DDS initially objected to my role, but was overruled by the DALA magistrate. However, DDS has also filed a motion to dismiss Jeanne’s appeal. We have filed briefs objecting to the Department’s motion.
DDS is continuing to use an argument, first employed against Jeanne at the time the program was terminated, that she has no grounds to appeal to DALA because she took Mia back home with her and Tom just days before the termination, and therefore no appealable “transfer” actually took place.
Our response to that argument is that Jeanne and Tom had no choice but to take Mia home because all services were about to end in the apartment. We maintain that DDS’s argument was and is disingenuous. The termination of the services amounted an eviction of Mia; and that eviction was effectively a transfer. The only difference between an eviction and a transfer is there is no suitable alternative location in an eviction.
We are asking DALA to order DDS to comply with all of the provisions of the transfer statute by acting with reasonable promptness to find another residential program for Mia, which would provide her with improved services and meet all requirements in her ISP. In the meantime, we argue, DDS should be ordered to provide sufficient supports and staffing to Mia in her current location to meet those same ISP requirements.
Mia’s supports and services continue to be inadequate
Since April 1, 2024, Mia has continued to reside in her parents’ home. While Tom is now paid as a shared living caregiver for Mia, Jeanne maintains that both she and Tom, who are in their 60s, are “overwhelmed with the challenges of providing Mia’s intensive supports and maintaining our commitments to our full time jobs.”
Jeanne said she and Tom are dedicating the majority of their time to Mia’s care, including her need for activities, companionship, nutrition, medication, medical appointments, and legal challenges. But it has been inadequate because DDS has not provided Mia with physical therapy nursing, or counseling services for the past year. She said Mia continues to have night terrors and has become more timid and inhibited as a result of the treatment she received from some of the staff in the apartment.
Yet Mia wants to be independent, Jeanne said. “She (Mia) wants to live in a home with a housemate with similar interests and goals and she wants to have friends,” Jeanne added. “She wants to live a full meaningful life in accordance with the DDS rules and regulations. She is not asking for anything above that. It should not be impossible.”
Jeanne said that in March of last year, with the termination of the apartment program looming, DDS Northeast Regional Director Kelly Lawless told her that, “‘What you (Jeanne) are seeking does not exist in DDS.'” She said she responded to Lawless that she “was advocating for adequate care and intensive supports for Mia. I asked her why that doesn’t exist in DDS, and she said that, ‘Your expectations are too high.'”
Clearly, expecting adequate care is not an unreasonably high expectation.
Mia herself seemed to sum it up during a bill sharing session hosted earlier this month by the Massachusetts Developmental Disabilities Council (MDDC), which Mia participated in via Zoom. “I want to help people and be a part of the community,” Mia said during the recorded session, with her mother sitting beside her.
Mia was helped in drafting her statement by a graduate student from Brandeis who was interning with the MDDC. “I want a home where I feel safe and with nice staff that will not yell at me and tell me to stay in my room,” Mia added. “I want to make choices about my life.”
Unspecified ‘settlement agreements’ allow abusive care providers to avoid placement in state Registry
[Clarification: This post has been updated to note that the settlement agreements referred to in the post were reached between the Disabled Persons Protection Commission and care providers who had filed appeals to the state Division of Administrative Law Appeals of registrable abuse affirmations.]
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State data show that in more than 40% of the cases in which care providers of persons with intellectual and developmental disabilities (I/DD) appealed “registrable abuse” affirmations to a state adjudicatory body, the state entered into “settlement agreements” with those providers.
Each of those settlement agreements, which are not subject to public disclosure, enabled the care providers to avoid placement in the state’s Abuser Registry.
Meanwhile, with that data also showing that a majority of abusive care providers of clients with disabilities have been able to avoid placement in the three-year-old Registry, we are asking the co-sponsors of the Registry statute to support corrective language to that statute and regulations.
The data, provided to COFAR by the Disabled Persons Protection Commission (DPPC), show the outcomes of the first three years of the operation of the Registry, which was established under “Nicky’s Law” in 2020. The DPPC data cover a period since the database was first put into use in July 2021.
Nicky’s Law was enacted to ensure that care providers who have been found to have committed abuse or neglect are no longer able to work for the Department of Developmental Services (DDS) or for any agency funded by DDS.
We first reported in July that in only about a third of the cases in which the DPPC or DDS affirmed initial substantiations of abuse allegations against care providers did the DPPC conclude after appeals that those persons’ names should be placed in the Registry.
Care providers against whom either the DPPC or DDS have substantiated allegations of registrable abuse have two avenues of appeal under the Registry law and regulations. First, a care providers can directly petition the DPPC to either overturn the substantiation or determine that the the abuse was not “registrable.”
Second, if the DPPC denies the care provider’s appeal, the care provider can further appeal to the Division of Administrative Law Appeals (DALA), an independent state agency that conducts adjudicatory hearings.
A detailed set of DPPC data, which we received in October, show that from Fiscal Years 2022 through 2024, care providers who petitioned the DPPC had their registrable abuse findings reduced to non-registrable abuse in 65% of the cases in which the DPPC had nevertheless affirmed, after the appeals, that abuse had occurred. That meant those care providers’ names would not be placed in the Registry.
Further, care providers who lost their DPPC appeals and then exercised their right to appeal again — this time to DALA — were able to avoid placement in the Registry in 43% of those DALA appeals. Thus, out of 192 care providers who petitioned and appealed both to the DPPC and then to DALA, only 7 care providers were subsequently placed in the Registry — a placement rate of only 4% of those petitioning and appealing to both the DPPC and DALA.
A total of 122 care providers were either placed in the Registry (119) or had their placements pending (3) during the three-year period. That number includes the 7 care providers who lost both sets of appeals to the DPPC and DALA, and 115 care providers who either didn’t file any appeals or who didn’t appeal to DALA.
A total of 283 care providers were initially found by either DPPC or DDS investigators to have committed substantiated abuse. So, the placement of 122 of those care providers in the Registry is a placement rate of 43%. The placement percentage is only that high because so many care providers didn’t exercise any or all of their appeal rights.
The chart below summarizes this data. (Click to enlarge.)
Also, while a DPPC attorney had previously said that the DPPC has had a policy of placing all care providers in the Registry who were found liable for sexual abuse, the data show that in 8 instances in which those care providers petitioned the DPPC, the abuse allegations were changed from registrable to non-registrable.
The settlement agreements
According to the DPPC data, 28 care providers, who lost their petitions to the DPPC, subsequently appealed to DALA during the three-year period. Of those 28 appeals, DALA, as noted, denied only 7, clearing the way for the placement of those care providers in the Registry. DALA reversed 2 of the appealed cases from substantiated to unsubstantiated abuse.
In an additional 12 cases, the DPPC entered into unspecified “settlement agreements with care providers who had filed appeals to DALA of registrable abuse affirmations. Seven appeals remained pending.
Each of those 12 settlement agreements allowed the care provider to avoid a Registry placement. According to the DPPC, the settlement agreements “generally involve the modification of the finding of ‘registrable abuse’ to (non-registrable) ‘abuse’ upon verification that the care provider underwent corrective action, such as remedial training.” In each of the settlement agreements the appeal to DALA was subsequently withdrawn.
A DPPC attorney stated that the settlement agreements are not public records.
We have asked the DPPC for clarification as to whether potential settlement agreements are offered by the DPPC to all care providers who file appeals to DALA of registrable abuse affirmations. If not, we asked, are there criteria that determine whether a settlement agreement is offered? And are there any regulations that allow the resolution of these cases via settlement agreements?
Loophole language correction
We have proposed legislative language that we think would close a loophole in the Registry Law that currently allows so many abusive care providers to avoid placement in the Registry even in cases in which the DPPC affirms, after appeals, that abuse occurred.
The loophole appears to exist in the wide discretion given to the DPPC in determining whether a substantiated incident of abuse was isolated or whether the care provider is nevertheless still fit to provide services.
The Registry regulations state that certain factors, such as prior instances of similar conduct, “may” be considered by the DPPC in the appeal process. We think the DPPC should be required to consider that and other factors if it is to determine fairly whether a given incident was isolated or not. Leaving the decision as to what to consider up to the particular DPPC employee deciding the appeal invites suspicion that the appeal process isn’t necessarily even-handed or fair.
We have contacted the offices of three state legislators who were original co-sponsors of Nicky’s Law, which created the Abuser Registry, and asked them to file corrective legislation. They are Senators Patrick O’Connor, Michael Moore, and Bruce Tarr.
Our suggestion for such language is the following:
1. In considering petitions and appeals filed to avoid placement on the Registry, both the DPPC and DALA must consider the following factors in determining whether the incident was isolated and unlikely to reoccur and the care provider is fit to provide services and supports to persons with intellectual or developmental disabilities:
- The care provider’s employment history in working with individuals with disabilities;
- Prior instances of similar conduct by the care provider;
- Any statements or communication regarding the care provider’s work history and fitness to provide services and supports to persons with disabilities; and
- Any victim-impact statements submitted by individuals with disabilities or their family members or guardians.
2. The DPPC and DALA must place all care providers for whom sexual abuse has been substantiated and affirmed after a petition or appeal process in the Registry.
Earlier this month, a legislative aide to Senator Moore stated that the senator planned to speak with his Senate and House counterparts, as well as leadership and stakeholders, about our suggested language.
We look forward to working with Senator Moore and others in the Legislature to address this issue.
Our priorities for the 2025-2026 legislative session
The 2025-2026 session of the Massachusetts Legislature began on January 1 of this year. So we are taking this opportunity to announce our priorities for this 194th legislative session.
Admissions should be opened to the ICFs and state-operated group homes
We are seeking the filing and passage of legislation that would require the Department of Developmental Services (DDS) to offer the Wrentham Developmental Center, the Hogan Regional Center and state-operated group homes as options for persons with intellectual and developmental disabilities (I/DD) who are seeking residential placements in Massachusetts.
Unless the administration agrees to open those facilities to new admissions, they will eventually close. DDS data show the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2024.
The census at Wrentham dropped from 323 in Fiscal 2015 to 159 in Fiscal 2024 – a 50% drop. The census at Hogan dropped from 159 in Fiscal 2011 to 88 in Fiscal 2024 – a 45% drop.
Source: DDS
From Fiscal 2008 to 2021, the census in the state-run group home system dropped from 1,059 to 1,023 – a 3.4% decrease.
Meanwhile, the census in the state’s much larger network of privatized group homes continued to climb during that same period, rising from 6,677 to 8,290 — a 24% increase.
Currently, the privatized group home system in Massachusetts is providing substandard care even as thousands of individuals continue to wait for residential placements.
Even the Arc of Massachusetts, which has pushed for the closures of all remaining ICFs, has acknowledged a “systemic failure” in the largely privatized DDS system in which thousands of persons with I/DD are unable to get services.
State-run residential facilities, which have better trained and higher paid staff, are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.
Yet, DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. During the past two years, we have reported on two admissions to ICFs in Massachusetts (here and here), but those admissions have been the exceptions. In at least two instances in the past two years, families have been unsuccessful in efforts to win placements for their loved ones at the Wrentham Center.
That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICFs, in particular, will eventually be closed.
Right to ICF care
Despite DDS’s policy, the federal Medicaid law and its regulations confer a right to ICF care to individuals and their families and guardians.
As Medicaid.gov, the federal government’s official Medicaid website, explains, “States may not limit access to ICF/IID service, or make it subject to waiting lists, as they may for Home and Community Based Services (HCBS)” (our emphasis).
Open ICF campuses to family housing
In addition to our proposal for legislation to open the ICFs to new admissions, we are calling for legislation that would establish housing on the Wrentham and Hogan campuses for elderly family members of the residents of the facilities.
Such housing would allow families to live in proximity to their loved ones in DDS care and to establish caring communities. It would provide peace of mind to ageing parents and siblings who may find it increasingly difficult to make long trips to visit their loved ones in the facilities.
Adequate funding needed for state-run facilities in the Fiscal Year 2026 budget
In order to preserve ICFs and state-operated group homes, state funding for these settings must be adequate. We are calling for the following increases in the state budget for the coming fiscal year:
- DDS ICF line item (5930-1000). Based on the federal Bureau of Labor Statistics inflation rate of 3.1% in the Boston Metropolitan Area as of November 2024, we are requesting a $3.9 million increase in this line item, from $124,809,632 in the current fiscal year, to $128,678,731 in Fiscal Year 2026.
The ICF line item decreased by 40% between Fiscal 2012 and 2025 when adjusted for inflation.*
- DDS state-operated group home line item (5920-2010). We are requesting a $10.3 million increase in this line item, from $330,698,351 to $340,950,000 in Fiscal 2026.
The state-operated group home line item increased by 47.6% between Fiscal 2012 and 2025 when adjusted for inflation. However, that compares with an increase during that period of 65% in the corporate-provider residential line item (5920-2000). The corporate community-residential line item was $1.7 billion in Fiscal 2025.
ICF budget language should be changed
We are seeking two modifications to the language that is included every year in the ICF line item in the state budget (5930-1000). In one instance, the language mistakenly implies that the U.S. Supreme Court ordered the closures of institutions for persons with developmental disabilities.
In the second instance, the annual budget language lists three conditions for discharging clients from ICFs to the community, but leaves out one of the key conditions in Olmstead, which is that the client or their guardian does not oppose the discharge. We will request that that condition be added to the language in the line item.
Regarding the first instance, the budget language refers to Olmstead v. L.C., the Supreme Court’s landmark 1999 decision, which considered a petition by two residents of an institution in Georgia to be moved to community-based care.
The budget language states that DDS must report yearly to the House and Senate Ways and Means Committees on “all efforts to comply with …Olmstead…and… the steps taken to consolidate or close an ICF…” (our emphasis)
However, as noted above, closing institutions was not the intent of the Olmstead decision. The decision explicitly states that federal law — specifically the Americans with Disabilities Act (ADA) — does not require deinstitutionalization for those who don’t desire it.
We believe the annual state budget language should be changed to state: “…the steps taken to consolidate or close an ICF and the steps taken to inform families of the choices available for residential care including ICF care.”
We are concerned that the current line item language could allow the administration to justify continuing to underfund the line item, and possibly to seek the eventual closures of the Wrentham and Hogan Centers.
Regarding the second instance in which we are seeking a language change, the three conditions listed in the annual state budget for discharging clients to the community are:
- The client is deemed clinically suited for a more integrated setting;
- Community residential service capacity and resources available are sufficient to provide each client with an equal or improved level of service; and
- The cost to the commonwealth of serving the client in the community is less than or equal to the cost of serving the client in an ICF/IID…”
The first two of those conditions do match conditions listed in the Olmstead decision for allowing the discharge of clients to the community. However, there is a further condition in Olmstead, which is that such a discharge is “not opposed” by the client or their guardian. That condition is not included in the budget language, and we will request that it be included.
Choice needed in residential services
DDS holds considerable authority regarding residential placements. Families cannot change residential providers without DDS approval. We would support legislation creating a voucher system, which would allow family choice, create competition, and improve the quality of care. This would also help families who need to move to other parts of the state for work or family reasons.
Guardianship reform needed
Reform is needed of the guardianship system in probate court, which traps many families into losing disputes with DDS.
We would support a guardianship reform bill that would provide for free legal representation for family members and that would presume that parents or siblings would be suitable guardians in petitioning for guardianships.
We have long supported proposed legislation that would presume that parents, in particular, would be suitable guardians of their adult children with I/DD. This legislation was first proposed by the late Stan McDonald, who had sought unsuccessfully to regain guardianship of his intellectually disabled son.
Stan’s bill, which was most recently filed in the previous legislative session, has never gotten out of the Judiciary Committee, however.
Independent DDS appeals process
The appeals process that persons must follow regarding Individual Support Plans (ISPs) contains a serious conflict of interest in that DDS controls the entire process.
When a family member or guardian of a DDS client appeals the client’s ISP, the DDS commissioner appoints a hearing officer of its choice to decide the case. After the hearing officer decides the appeal, the commissioner can reverse the decision. We have reported on at least two instances in the past year and a half in which this appeals process has been marred by apparent bias on the part of the DDS-selected hearing officer against the appellants.
We would support a bill, which would place the entire ISP appeals process under the control of the independent state Division of Administrative Law Appeals (DALA).
DPPC Abuser Registry reform
Last year, we reported that in only a minority of the cases in which the Disabled Persons Protection Commission (DPPC) affirmed initial substantiations of abuse allegations against care providers did the agency conclude that those persons’ names should be placed in the DPPC’s Abuser Registry.
An individual whose name is listed in the Registry can no longer work in any DDS-funded care setting.
Following our report, state Senator Patrick O’Connor, the original sponsor of the legislation that created the Registry, said he was worried by our findings and that it “may be time to fine-tune” the law.
We are calling for changes in the law that include requiring the DPPC to consider several factors listed in the regulations for determining whether a care provider against whom abuse has been substantiated is really fit to continue to provide services. Right now, the regulations say only that the DPPC “may” consider factors such as previous incidents of abuse and the provider’s previous work history.
Also, we believe the regulations should explicitly require that the DPPC place care providers in the Registry in all cases in which the agency has affirmed allegations of intentional physical or sexual abuse.
Funding to corporate providers must result in higher wages for direct-care workers
Increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.
We are calling for legislation that would raise the pay of direct-care workers employed by DDS corporate providers to $25 per hour.
Work opportunities needed in congregate care settings
In the wake of the closures of all sheltered workshop programs in Massachusetts as of 2016, we are calling for legislation authorizing the introduction of work opportunities for individuals in community-based day programs.
The last time such legislation was proposed appears to have been in 2019 in the form of then H.88. That legislation, however, did not make it out of committee.
Safeguards and corrections needed in Supported Decision Making legislation
During the last legislative session, identical Supported Decision Making (SDM) bills came close to final enactment, but the bills died in the House Rules and House Ways and Means Committees respectively at the end of the session. We had raised numerous concerns about the bills with those and a number of other legislative committees.
We expect the same SDM legislation will be refiled in the current session. We intend to raise similar objections to the bills unless they are redrafted to correct serious flaws.
SDM reflects a growing movement to restrict guardianships of persons with I/DD and replace those guardians with “networks” of more informal advisors. While SDM can hold promise for some high-functioning individuals, and we would support its adoption only with adequate safeguards, particularly safeguards against the potential marginalization of family members.
*From the Massachusetts Budget & Policy Center’s online Budge Browser at https://massbudget.org/budget-browser/.
A compelling new book chronicles a girl’s life at the Belchertown State School
Edward Orzechowski has done it again. He has written a second gripping, as-told-to account of life within the notorious and now long-closed Belchertown State School in western Massachusetts.
The launch of his new book, “Becoming Darlene,” is scheduled for November 23 at 1 p.m. at the Florence Civic Center in Florence, MA.
“Becoming Darlene” is about the life of Darlene Rameau, a former Belchertown resident, as related in a series of interviews with Orzechowski. It follows a similar pattern to that of Donald Vitkus, whose experience before, during, and after Belchertown, was the subject of Orzechowski’s first book, “You’ll like it Here.”
In each case, Orzechowski, a former COFAR Board member, has written the life story of a person who spent most of their childhood at the Belchertown school. When Donald was first sent there in the 1950s, and Darlene in the 1960s, that institution, like a number of others in Massachusetts, was a literal warehouse of abuse and neglect.
It is important to understand that the type of institution that Orzechowski describes in both of his books no longer exists today. Starting in the mid-1970s, while Darlene was still at Belchertown but Donald had long since left it, major upgrades in care and conditions began to be implemented at that and other similar institutions in Massachusetts. These changes were the result of a class action lawsuit first brought by Benjamin Ricci, the father of a former Belchertown resident.
The upgrades were overseen by U.S. District Court Judge Joseph L. Tauro. By the time Tauro disengaged from his oversight of the case in 1993, he wrote that the improvements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”
As Orzechowski notes, Darlene became aware while she was still at Belchertown of the impact of Tauro’s involvement. Suddenly, and seemingly in one day, new, kinder staff appeared. Restrictions and beatings ended, Darlene says. But those changes still took many years to be fully implemented.
In 1996, Belchertown was closed for good. Today, only two large congregate care facilities remain in Massachusetts — the Wrentham Developmental Center and the Hogan Regional Center. Both centers must meet strict federal standards for care and staffing that were made possible by the federal litigation in Massachusetts and in other states starting in the 1970s.
At Belchertown, Darlene was a keen observer of nonstop human suffering, of wards filled with naked, neglected children, and reeking of urine and feces and infested with insects.
As was the case with Donald Vitkus’s story, much of the story about Darlene is about her attempts to cope in the “real world,” after having been discharged from Belchertown. For both Donald and Darlene, the transition was filled with trials and setbacks. Belchertown continued to affect both of their lives in sometimes tragic ways.
“Becoming Darlene” is a true story, but it reads like a novel. It is a page turner. It is at turns disturbing and heart breaking. But as with Orzechowski’s first book, one finishes this second book with a feeling of gratitude for Darlene and for the triumph of her spirit.
COFAR blog 