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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.
COFAR appeals contradictory data from DDS on the population trend in state-operated group homes
Has the number of residents in the state-run network of group homes in Massachusetts for persons with intellectual and developmental disabilities (I/DD) been rising or falling?
We thought we had long known the answer to that question: The population or census of the group homes has been steadily falling. That conclusion was based on data provided to us in recent years by the Department of Developmental Services (DDS) in response to our periodic requests under the state’s Public Records Law.
But on September 18 of this year, DDS provided us with new data, in response to a new Public Records request, that contradict its previous numbers. That new data indicate that the census in the state-operated homes actually rose during the same fiscal years DDS had previously said it was falling – 2020 through 2023. Moreover, the new data show the census continued to rise until as recently as last month.
The problem is this discrepancy between the two sets of numbers from DDS leaves us uncertain what to believe. As a result, we have appealed to the state Public Records Division, asking them to order DDS to explain the discrepancy. So far, the Department has declined to do so.
The DDS state-operated group home network is far smaller than the privatized group home system, which is managed by DDS-funded corporate providers. DDS spends about $350 million a year in operating its state-run group homes, compared with more than $2 billion a year on the provider-operated homes.
But state-run services are just as important as provider-run services. We consider the state-run group homes and the Wrentham and Hogan congregate care centers to be the backbone of care in the DDS system. It has been our experience that staff in those state-run facilities are better paid and trained than staff in provider-run settings.
Yet, despite the fact that thousands of people with I/DD are waiting for residential placements and other services from DDS, the Department does not generally inform people seeking residential placements of the existence either of its network of state-run homes or of the Wrentham Developmental Center or the Hogan Regional Center. Instead, the Department directs those people to the much larger network of provider-run homes.
That’s another reason that a falling census in the state-operated group home system seems more likely to be the case than a rising census. In fact, it has long appeared that the administration does not view state-run residential services as viable options for waiting clients. DDS has, in our view, been letting the state-run system die by attrition.
Conflicting data regarding the census in state-operated group homes
So could it really be that the census has actually been rising in state-run group homes?
As noted, previous data from DDS showed a dropping census in the state-run group home system. During the period from Fiscal 2015 through 2024, that data showed the census had dropped from 1,206 residents to 986 – an 18.25% decrease.
Data provided by DDS on November 6, 2023, in response to a Public Records request, dovetailed with that previous data. The 2023 data showed the census dropping in the state-operated group homes by 2.9% between Fiscal 2020 and 2023.
However, in its latest response to our Public Records request on September 18, DDS provided data indicating, for the first time, that the census rose in the state-operated homes each year from Fiscal Year 2020 to 2023. The census in those years was now shown to have risen by 5.6%, rather than to have fallen by 2.9%, as DDS’s previous data had shown.
The census numbers provided by DDS on September 18 were on average 13% lower than the numbers that DDS had provided on November 6, 2023, for the same fiscal years.
The graph below shows the conflicting trend lines regarding the census based on those two contradictory sets of data from DDS.
Our appeal of the latest data response
Based on this discrepancy in the numbers between November 2023 and September 2025, we filed an appeal with the Public Records Division on September 24. We noted that the contradictory data made it impossible to determine which version represents DDS’s actual records.
We explained that the two data sets from DDS depict trends in opposite directions. We therefore asked the Public Records supervisor to direct DDS to clarify or reconcile its two sets of census data, or to explain in writing the reasons for the discrepancies so that the records provided would be comprehensible and complete.
On October 6, the Public Records supervisor denied our appeal, contending we hadn’t alleged a clear violation of the state’s Public Records Law (M.G. L. c. 66, § 10) by the Department.
On October 14, we asked the Public Records supervisor to reconsider her denial. We argued that under Section 10 of the Public Records Law, every state agency is required to respond to public records requests within 10 business days unless an extension or exemption applies. We noted that by producing two conflicting sets of census data for overlapping fiscal years—each purporting to respond fully to our records requests—DDS had failed to demonstrate that it had furnished the actual records it maintains as required by the law.
We further argued that under the Public Records law regulations [950 CMR 32.04(5)(b)], the agency “shall assist persons seeking public records to identify the records sought.” This duty necessarily includes responding in a way that allows the requester to understand what records are being produced. We noted that when an agency issues inconsistent responses for identical time periods, the requester cannot meaningfully identify the records received, frustrating the purpose of the regulation.
In addition, Section 10 of the Public Records statute authorizes the imposition of civil penalties when an agency has “failed to act in good faith in failing to furnish the requested record.” In issuing conflicting data for the same time frame without clarification, we maintained, DDS has not shown that it has acted in good faith or furnished a coherent version of the requested records.
Battle over records on vacancies in state-run group homes
Last year, we fought a similar battle with DDS to obtain records on the number of vacancies existing in the state-run group homes. DDS finally acknowledged it doesn’t track vacancies in the state-operated network.
We are hopeful that common sense will prevail in this case and that the Public Records supervisor will ultimately agree that the Public Records Law is meaningless if an agency can respond to requests by producing data that can’t be meaningfully interpreted.
In this case, the confusion is particularly frustrating. All we want to know is whether the census in the state-operated group homes is truly failing, as the data have clearly shown in the past, or whether that reported trend was incorrect.
So far, DDS, in their usual manner, has decided not to enlighten us on this important matter. We hope the Department will finally be ordered to do so.
GBH News exposes the state’s policy of letting Wrentham and Hogan die by attrition
GBH News, a public radio and television station in Boston, has become the first mainstream news outlet in Massachusetts to report on our concerns about the impending death through attrition of the Wrentham Developmental Center and the Hogan Regional Center.
Wrentham and Hogan are the two remaining congregate care centers for persons with intellectual and developmental disabilities (I/DD) in Massachusetts.
In her broadcast and online article on Wednesday, GBH reporter and producer Marilyn Schairer, interviewed COFAR members Kim Meehan and Colleen Lutkevich, who discussed the critical importance of those facilities to their loved ones who are living there.
Both facilities are referred to as Intermediate Care Facilities (ICFs), a designation under the federal Medicaid law that requires adherence to strict standards for care.
Colleen, who retired as COFAR’s executive director in 2021, talked about the benefits her sister Jean Sullivan has gotten from Wrentham where she has lived for the last 65 years. Jean lives in a cottage on the grounds.
Kim discussed her exhaustive efforts to get her 52-year-old sister, Kristen Robinson, admitted to the Hogan Center where she is now thriving. Kristen is profoundly intellectually disabled, legally blind and quadriplegic, and has a seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
“Our family asked over 26 to 30 times to high-up people [in the state], ‘Why can’t she be admitted to the Wrentham Development Center or the Hogan Center?’” Kim told GBH. “And we were always told by the state that she was not eligible.”
Kristin was finally placed at Hogan last year after it became clear that no other DDS-funded facility could or would serve her.
State claims no admissions
We have long reported that the Department of Developmental Services (DDS) rarely accepts new residents to either Hogan or Wrentham, and does not offer either those facilities or its own network of state-operated group homes as residential options to persons seeking placements.
As a result, the population or census at Wrentham and Hogan has been steadily dropping in recent years. The latest data we have gotten from DDS shows that the census at Wrentham was 143 as of June 30 of this year, down from 211 in Fiscal Year 2020. The census at Hogan had dropped to 84, down from 106 during that same time period.
A DDS spokesperson stated to GBH that the Department has no intention of shutting either Hogan or Wrentham down. Yet, in response to a Public Records Request from the news outlet, DDS stated that no new residents have been accepted at Wrentham since the end of 2023, and no new residents at Hogan have been accepted since the end of 2020.
In our view, there can be no long-term future viability for either Wrentham or Hogan if the Department declines to accept new residents to them.
(DDS did not explain how its statement that no new residents have been accepted in recent years squares with the fact that the Department has agreed to place a handful of residents at the two facilities, such as Kim Meehan’s sister.)
Undisclosed acceptance criteria
Adding to the confusion, DDS also told GBH News that it will still accept people at Wrentham and Hogan if they meet the Department’s acceptance criteria. But the Department did not disclose what those criteria are.
As we have reported, DDS has stated that DDS “avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.”
It is not clear whether the presentation of a health or safety risk are among the acceptance criteria DDS is referring to. If so, it does not appear those criteria are applied consistently.
DDS also argues that it avoids placements at Wrentham and Hogan because those settings are allegedly more restrictive than community-based settings. We disagree with that claim, noting that many individuals and their families maintain 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. Meanwhile, thousands of people are waiting for residential placements in group homes that are rife with abuse and neglect and underpay their direct-care staff. The executives who run those corporate providers make exorbitant salaries.
Few legislators stepping forward
In May, COFAR took part in a visit to the State House in Boston in which a dozen Hogan and Wrentham advocates met with staff members of two legislators. Unfortunately, no legislators themselves attended the meetings.
However, GBH reported that state Representative Marcus Vaughn, a Republican from Wrentham, has expressed support for the preservation of the ICFs. “At a time when our state faces a growing demand for specialized care and appropriate placements, reopening admissions and thoughtfully expanding that capacity at the (Wrentham) center is not only practical, but it’s the right thing to do,” Vaughn said.
GBH even interviewed a corporate provider executive who acknowledged that Wrentham and Hogan serve as a backstop of care for persons who can’t be served successfully in the community. “It’s interesting because people’s impressions of institutions are dated,” Brian Carbone, a senior vice president at the May Institute, told the news outlet. “I think there is a place for (Wrentham and Hogan),” Carbone said.
Article inaccurately stated that Fernald was closed due to abuse
While GBH stated correctly that the state has closed most of its state-run facilities for people with I/DD, the news source inaccurately implied that those facilities had provided sub-standard care. The article stated that the former Fernald Developmental Center, in particular, “closed after its population decreased sharply amid allegations of sex abuse, human rights violations and unethical practices.”
When Fernald and the other ICFs were closed, there were no pending allegations of abuse or unethical practices in any of them. GBH and the rest of the news media have failed to specify that human rights violations at Fernald and other such facilities occurred between the 1940s and 1970s.
What is almost never mentioned by the media are 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.”
Fernald was closed in 2014, long after those improvements were completed and strict federal standards were implemented under the ICF Medicaid designation. Several such facilities were closed, starting in the 1990s, on the basis of misleading claims that the state would save money in shutting them down.
Written version leaves out COFAR comment on right to an ICF
The written, online version of the GBH story also appears to have edited out my comment that federal law gives eligible persons the right to choose Wrentham and Hogan as residential options. My comment was included in the earlier broadcast version of the story.
Our position is that the federal Medicaid statute provides a right to ICF care, stating that if a state includes ICFs in its “State Medicaid Plan,” as Massachusetts does, the state must provide that:
…all individuals wishing to make application for medical assistance under the (state) plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals. [42 U.S.C. § 1396a(a)(8)]
Federal Medicaid regulations state explicitly that individuals seeking care, and their families and guardians, should be “given the choice of either institutional or home and community-based services. [42 C.F.R. § 441.302(d)] (My emphasis.)
We hope that in its future coverage, GBH will address and correct those statements. Overall, however, the GBH broadcast and online article are a great contribution to what has been, up to now, a one-sided discussion about ICF care. GBH has finally offered the other side of the story, which we greatly appreciate.
Legislature trims back governor’s proposed funding increases for state-run residential services
For the second year in a row, the state Legislature cut back a modest increase in funding that Governor Maura Healey had proposed for state-operated group homes for people with intellectual and developmental disabilities (I/DD) in Massachusetts.
Our analysis of key Department of Developmental Services (DDS) line items in the Fiscal Year 2026 state budget also shows that for the first time in several years, the Legislature reduced Healey’s similarly modest, proposed increase in funding for Intermediate Care Facilities (ICFs).
The ICF line item funds the operation of the Wrentham Developmental Center and the Hogan Regional Center. Healey signed the Fiscal 2026 budget into law on July 4.
The final Fiscal Year 2026 budget legislation shows that funding appropriated by the Legislature for the state-operated group home line item was increased from $330.7 million, in the previous fiscal year, to $347.2 million. But that 5% increase was $14.8 million lower than the 9.5% increase the governor had initially proposed in January.
Similarly, the ICF line item received a 5% increase in funding in Fiscal 2026, from $124.8 million to $131 million. But that increase was $1 million less than the 5.8% increase the governor had proposed.
What appears to have happened to the state-operated group home and ICF line items is that the Senate adopted the governor’s proposed increase for each line item for Fiscal 2026, but the House approved a smaller increase. In both cases, a House-Senate Conference Committee on the budget adopted the lower House version.
Corporate provider line item fully funded
In contrast, the Legislature fully adopted the governor’s proposed increase in the residential corporate provider line item of nearly 19% for Fiscal 2026. That amounted to an increase of $320.4 million, from $1.7 billion to over $2 billion.
In addition, the Legislature approved $207 million in funding for a reserve fund for the corporate providers. As we have reported, 75% of the funding in the reserve fund is supposed to be used to boost direct-care wages; but there doesn’t seem to be a method for tracking or enforcing that 75% requirement.
Funding trimmed for state-run services in the previous year
In July of 2024, we reported that while the state-operated group homes received a modest 4% increase in funding for Fiscal 2025, that increase ended up being $2.4 million less than the increase the governor had proposed when she submitted her budget to the Legislature in January 2024.
This trend continues to be concerning because the administration and Legislature are continuing to allow the residential population or census at Hogan and Wrentham and in the state-operated group homes to drop steadily by attrition.
No apparent cut in Medicaid
We would note that we haven’t yet seen an indication that there has been a cut in Medicaid funding to DDS as a result of recent budget action at the federal level in Washington.
That may still happen. But we don’t think the reduced funding increases for the state-operated group homes or the ICFs reflect federal Medicaid cuts. If that were the case, there would be a similar reduction in federal Medicaid reimbursement to the state for its funding of DDS corporate residential providers, which doesn’t appear to have been the case.
But even if federal Medicaid cuts don’t occur, we need to continue to impress upon our leaders at the state and federal levels that state-run services for some of the most vulnerable among our citizens are being neglected.
In cutting or trimming back funding for state-run services, while at the same time boosting funding to corporate providers, those leaders are sending the message that they are on the side of those corporate interests and not necessarily on the side of their own clients and their families and guardians.
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.
Volunteer advocates meet with state senators’ staffs in start of effort to preserve Wrentham and Hogan centers
The fight to preserve the Wrentham and Hogan care centers in Massachusetts began this past Friday with a visit to the State House of a dozen advocates and family members of persons with intellectual and developmental disabilities.
Our group, which included several COFAR members, held meetings with legislative aides to State Senators Paul Feeney and Rebecca Rausch. Rausch’s district includes the Wrentham Developmental Center.
Jim Durkin, legislative director for AFSCME Council 93, a state-employee union in Boston, spoke to us prior to the Friday meetings, noting that AFSCME is currently deeply involved in fighting to save the Pappas Rehabilitation Hospital.
“AFSCME is fully behind your efforts to preserve Wrentham and Hogan, which are vital to the fabric of care in this state,” Durkin said. “Right now, we are fighting the battle for the Pappas Hospital, but we will be working with you to make sure that the ICFs are protected as well.”
The Healey administration’s move to close Pappas and allow Wrentham and Hogan to die by attrition are all part of the same effort to eliminate state-run care under what we have long argued is a faulty assumption that it will save the state money.
The first meeting we had on Friday was with Shane Correale, legislative director for Senator Feeney. We have asked Feeney to draft legislation that would open the doors at Wrentham and Hogan to new admissions and establish housing on the campuses of the facilities for elderly family members of the residents.
Wrentham and Hogan advocates at the State House — (Left to right) Mitchell Sikora (COFAR Board member), Marsha Hunt, Shiri Ronen-Attia, Laurie Noland, Ilene Tanzman, Ana Paula Meehan, Allan Tanzman, Mary Dias, Elaine Strug, Jim Durkin (AFSCME Council 93), and Kim Meehan. (Photo by David Kassel)
During that meeting, COFAR member Irene Tanzman stressed the importance of Intermediate Care Facility (ICF) settings, such as Wrentham and Hogan, which meet federal standards that are stricter than the state standards for group homes. “Not everyone thrives in the community,” Tanzman said, adding that the state is “denying us the opportunity” for ICF-level care.
“We want choice,” Tanzman added. “The community is a legal fiction. People coming in get nothing. They get so-called self-directed services with inadequate or no budgets.”
Kim Meehan, a COFAR member, talked about her successful effort last year to gain admission to Hogan for her legally blind and quadriplegic sister Kristen. But Kristen’s admission came only after a lengthy battle that included blog posts by COFAR in support, and coverage by Fox 25 news.
“There was no place for Kristen to go,” Kim said, explaining the situation her sister was facing while being kept for two months at Faulkner Hospital. “DDS kept using the verbiage that the community would be the ‘least restrictive’ setting for her. It didn’t matter to DDS that her doctor said she needed an ICF.”
Mitch Sikora, a COFAR Board member, recounted the landmark Ricci v. Okin litigation in the 1970s and 1980s that led to major improvements in state-run facilities that serve people with intellectual disabilities. Many aging people with intellectual disabilities, he noted, are in particular need ICF-level care because facilities such as Wrentham and Hogan are equipped and staffed to serve people with complex medical needs.
Sikora also discussed the comprehensive care his brother Stephen has received at Wrentham.
Both Shiri Ronen-Attia and Marsha Hunt pointed out that their sons are nonverbal, don’t socialize, and have no interest in group activities — characteristics that make them different from most people with developmental disabilities who are suitable candidates for community-based settings. “Group homes can’t meet their needs,” Ronen-Attia said. “They have no voice.”
Hunt said that her son “sits day after day with nothing to do.” He is not provided in his group home with the occupational, physical, or speech therapy that might enable him to make progress in those areas, she said.
As I noted, many group homes have become the new warehouses in which intellectually disabled people are now largely placed.
We also discussed the proposed legislation that Senator Feeney has agreed to draft. As Irene noted, the legislation was proposed some five months ago.
Correale said Feeney’s staff was still working on our legislative proposals, and was “trying to bring them to the Senate as an institution.” He said Feeney’s office has begun discussing the legislation with the co-chairs of the Children, Families, and Persons with Disabilities Committee.
COFAR has specifically asked Feeney’s office to draft language to be added to the ICF line item in the state budget, stating that persons who qualify for community-based care from DDS have a right to ICF care.
In sum, Friday’s meetings convinced us that if state-run ICF care is to be preserved in Massachusetts, advocacy efforts must continue, and should be combined, if possible, with the ongoing effort to save the Pappas Hospital. We recognize that this will be an uphill battle.
But the good news is that we got what seemed to be a sympathetic hearing on Friday from the staff members of the two legislators. What is needed going forward is for the lawmakers themselves to attend the advocacy sessions, and to publicly support the preservation of state-run care.
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/.
An overlooked but vitally important book on the history of institutional care in Massachusetts
Among the books that anyone interested in the continuum of care for persons with intellectual and developmental disabilities (I/DD) should not miss is Ingrid Grenon’s meticulously researched “From One Century to the Next: A history of Wrentham State School and the Institutional Model in Massachusetts.”
I hope the controversial Special Commission on State Institutions, which is due to release a report on the history of institutional care in Massachusetts next June, has a copy of this book. While the book can be purchased online, it is also available in libraries.
I have to confess to having missed this book, which was published in 2015, until Grenon contacted me a few weeks ago. Having now read it, I realize it makes a powerful case that institutions, in themselves, are neither good nor bad. It is how they are run that counts, just as is the case in any care setting.
As this book documents, the high point of the care and services at Wrentham — prior to the advent of the modern Intermediate Care Facility (ICF) model in the 1980s — was during the 1920s.
The 1920s, exactly a century ago, 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. Wallace displayed a genuine interest in helping them lead meaningful and productive lives.
But, as the book shows, 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. By 1960, Wrentham, which was intended to house no more than 1,500 residents, had a residential population of 2,400. Today, less than 160 residents remain there.
Wrentham and other state schools in Massachusetts were finally brought back to excellence as a result of the Ricci v. Okin class action litigation in the 1970s and the intervention of the late U.S. District Court Judge Joseph L. Tauro.
A refutation of the ideology behind deinstitutionalization
Based on that historical arc, I think the book offers a compelling refutation of the longstanding and dominant ideology used to support deinstitutionalization. That ideology is based on the premise that all institutional care is bad and outdated, and that that characteristic never changes and can never change.
The book, however, shows, on a year-by-year basis, how one institution – Wrentham — progressed from very good to very bad, and back again. Wrentham did change, and it changed dramatically. It is clear that if an institution is well run and has sufficient resources, it can be a positive and even necessary option for residential care.
Grenon’s book also shows how the ongoing debate over institutional versus community-based care was central to the thinking even of Walter Fernald and Wallace way back in the late 19th and early 20th centuries.
What was later to become the Fernald Developmental Center was established in 1848 as the first institution in the United States for persons with intellectual and developmental disabilities. It was later named for Walter Fernald, who became its first superintendent. The then Wrentham State School was officially opened in 1910.
Grenon’s book demonstrates that it’s not a simple proposition that the Fernald and Wrentham schools were meant to be segregated facilities, intended to keep people with intellectual disabilities out of the view of the general public. Even for Walter Fernald and George Wallace, there were two ways of looking at their facilities.
The centers could be seen from the perspective of the now discredited science of eugenics, as places to separate people with I//DD from the general population. Or they could be seen, as Wallace viewed them and Fernald later came to view them, as places where people with I/DD could be helped to lead meaningful and fulfilling lives. Unfortunately, the prevailing view today is that that former perspective regarding institutions is the only valid one.
Bellotti and Dukakis changed the game
Grenon documents Wrentham’s history virtually year by year from the early 1900s until 1993 when Judge Tauro officially disengaged from the Ricci litigation. It includes many photos from throughout that period.
In addition to consulting numerous primary sources, Grenon interviewed many key figures in the history of Wrentham and of institutional care in Massachusetts. Among those were former Governor Michael Dukakis and his then Attorney General Francis Bellotti.
Bellotti, who died yesterday (December 17) at the age of 101, took the unusual and courageous step in response to the Ricci lawsuit of refusing to defend the conditions at Wrentham, Fernald, Belchertown and the other state schools in the 1970s.
As Grenon explains, Bellotti’s refusal as attorney general to defend the administration – a position that Dukakis fully supported – meant the state would cooperate with the plaintiffs in the case. Those plaintiffs included Ben Ricci, who had brought the original lawsuit on behalf of his son, who was a resident of the then Belchertown State School.
Founding of COFAR
Grenon also interviewed John Sullivan, one of the founders of COFAR, whose daughter, Colleen Lutkevich, continues to work with this organization.
Sullivan, who died in 2017, told Grenon in 2012 that he had helped start COFAR in 1984 as a counter to the Massachusetts Arc and to Rhode Island Senator John Chaffee, both of whom were pushing to close all of the state schools and transfer all of the residents to privately run, community-based group homes.
Sullivan and other like-minded advocates, including Ricci, Charles Hart, Richard Krant, and Louise Johnson, believed that the improvements brought about by the Ricci litigation had transformed Wrentham and the other state schools into the best possible settings for their loved ones by the mid-1980s.
Personal experiences
But Grenon’s book is based on more than historical research and even interviews. She also recounts her own experiences at Wrentham, having worked there for 34 years in a variety of capacities, starting in 1981. Her personal descriptions draw the reader into the day-to-day life and drama of the institution during her time, and add to the context and richness of the center’s history.
Grenon started working at Wrentham after graduating from college with a degree in psychology. Her first job was as a direct care worker, a position referred to at the time as a “Mental Retardation Assistant.” She spent most of the next four years with the “heavy hitters” — women in the D Building who were given that appellation because they had behavioral problems.
In 1982, Grenon was promoted to ward supervisor, and then became building manager, and later back-up shift supervisor and crisis responder.
In 1985, because of her separate degree in equestrian science, she became director of a new therapeutic horseback riding program at Wrentham. And from 1992 until 2014, she served as a coordinator in public relations at Wrentham and as a community liaison.
In 2016, Grenon discussed her book and emerging therapies and models of care for people with I/DD in a series of interviews, including this one.
Opposition from DDS
But as Grenon explained to me, the Department of Developmental Services (DDS) was not happy with her book. She said that when top DDS administrators learned she was writing it, they wanted her to emphasize only “the most egregious” aspects of Wrentham’s history.
The reason for DDS’s position is clear. Since the 1990s, a succession of administrations in Massachusetts has been intent on shutting down state-run residential care and privatizing the services. But Grenon told the Department officials she wanted to tell the whole history of Wrentham, both good and bad.
The result, she said, was that she was repeatedly threatened by DDS with termination in the last few years of her employment, and was later even banned from visiting the campus.
Grenon said that at a meeting with the DDS administrators in 2013, “They all wanted to know why I wanted to present the facility in a positive light, and I told them something like, ‘up until now, everything that has ever been written about facilities has been very negative. I’ve found some surprising evidence to the contrary and I want to present it. I don’t just want to regurgitate egregious conditions, I want to present facts.’”
Grenon said, though, that the reply from one of the administrators at the meeting was, “’We would really rather that you present the egregious conditions. . .’” She said she was also told “not to make the facility look good.”
As we’ve argued before, it is vitally important to study the history of the care of persons with I/DD in Massachusetts and elsewhere, if only to avoid repeating the mistakes of the past. It is just as important to recount the entire history, and, as Grenon said, to present the facts.
It is only in recounting the full and complete history of any person, event, trend or institution that valid conclusions can be drawn as to the meaning of the past and how to plan for the future. That is what Grenon sought to do in writing her book; and, in our view, she fully succeeded.
Legally blind and quadriplegic woman ‘thriving’ at Hogan Center
After initially being denied a placement at the Wrentham Developmental Center, Kristen Robinson has been living and “thriving” since June at the Hogan Regional Center, her sister, Kim Meehan, said last week.
Kim said the family is now ready to talk about the happy outcome of their months-long struggle to get Kristen, who is 51 years old, into an Intermediate Care Facility (ICF) in Massachusetts.
“She (Kristen) is so happy,” Kim said. “ She’s joyful, cared for, loved. They love her at Hogan. She’s treated the way she should be treated.”
Hogan, which is in Danvers, and the Wrentham Developmental Center are the state’s two remaining ICF-level congregate care centers. But as we’ve noted many times, it is extremely difficult for people to get admitted to them.
Kristen and Kim on wheelchair swing at Hogan Center
As we reported in May, then Department of Developmental Services (DDS) Commissioner Jane Ryder initially promised Kristen’s family she would admit Kristen for evaluation and rehabilitation to Wrentham’s May Center medical unit.
But Ryder reneged on that promise just a few days later, saying she hadn’t been aware that only Wrentham Center residents are admitted to the May Center unit. This was despite the fact that Kristen is profoundly intellectually disabled, legally blind, and quadriplegic, and has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
DDS rarely admits individuals to either ICF because the Department maintains that so-called community-based residential settings are less “restrictive.” But DDS had been unable to find either a community-based group home or a nursing home that could meet Kristen’s needs.
Yet, while Ryder did go back her promise to admit Kristen to Wrentham, Kim said Ryder then gave the family some other options. One option was for an “evaluation” of Kristen at Hogan; and the other options were for short-term placements at either of two private rehab facilities or a state-operated group home.
Kim said the family visited all of those settings and selected Hogan even though it is a three-hour round trip from Kim’s home in Norfolk. “We felt she would be safe there,” she said.
Kristen was admitted to Hogan on June 17. It is not clear whether the placement is considered by DDS to be permanent, but Kim said she and Karen are prepared to fight to ensure that she remains there.
Hogan offers full range of services and activities
Kim maintained that all of Kristen’s needs are being met at Hogan, particularly her need for 24/7 nursing care.
Prior to her placement at Hogan, Kristen had been confined for weeks at Faulkner Hospital in Boston following a choking incident in her mother’s home.
Kristen had lived her entire life under her mother’s care in Walpole. But when their mother died a year ago this month, Kim and her sister, Karen Brady, and their husbands began to take turns caring for Kristen and staying overnight with her.
Given Kristen’s medical complexities – particularly those related to swallowing and choking – it is safest for her to be at a facility like Hogan where medical care is available on site, Kim said. At Hogan, Kristen doesn’t need to be taken off campus for medical care or for her day program.
Kim said Kristen has been receiving physical and occupational therapy at Hogan, and is attended by doctors, nurse practitioners, and many other care givers. She is also regularly taken outside for recreational activities, including the use of a swing set built for people in wheelchairs. And she attends arts and crafts, music nights, communal dinners, and enjoys visits from school bands.
Kim said she is looking forward to having Kristen attend Hogan’s greenhouse this winter to work on making wreaths. “She always enjoyed planting flowers with our mother,” she said.
“Normally, at age 22, the educational system falls off,” Kim noted. “Here they work with her daily. This is a community like no other. When we looked at the group homes DDS showed us, people were just sitting around watching TV.”
Cleanliness highlighted
Kim said she would also like to “highlight the cleanliness at Hogan. You could eat off the floors there.” Kristen is also very clean now, she said. When she was at the hospital, the staff were not able to shower her, she said.
Kristen’s potential still being assessed
Kim said that since she has been at Hogan, Kristen “is doing things we never knew she could do, and they’re still in the early stages of determining her capacity.”
For instance, physical therapists are working with her on standing up. “She hasn’t stood up since she was a little kid. She is now feeding herself with assistance,” Kim said.
Kim added that clinicians at Hogan think Kristen may be able to understand more than her family had previously thought. Early on, they found that Kristen could identify six colors. “She was never able to do that before.”
The Hogan clinicians also think Kristen may be able to communicate with a communication board. “They’re doing assessments to see what she can comprehend. They are learning things about her that we didn’t know. It could take years to find out what’s going on in her mind,” Kim said.
Similar assessment from mother of man admitted to Wrentham in 2022
Kim’s assessment of Hogan is similar to Janice Marinella’s assessment of the Wrentham Center. Janice’s son Jeremy was admitted to Wrentham in 2022 after years of poor care in the community-based system.
Janice told us at that time that, “I no longer see it (Wrentham) as institutional. I now see the love and devotion the staff gives my son.” She added that even though the buildings are old, her son’s unit is “immaculate.”
It is unfortunate that the Healey administration continues to subscribe to a long-held ideology that care in Massachusetts’ two remaining congregate-care centers is unduly restrictive, and that better and more appropriate care can be found in the community-based and largely privatized group home system.
The evidence clearly shows this ideology is wrong. It doesn’t matter how many people are served by a care setting as long as the ratio of staff to residents is adequate and the staff are caring, well trained, and motivated. The testimony of Kim Meehan, Janice Marinella, and others we have spoken with over the years shows that is certainly the case at the Wrentham and Hogan Centers.
Is RFK Jr. open to reversing the longtime federal policy of phasing out state-run and ICF care?
Late last month, we sent a message to Robert F. Kennedy Jr. via his Make America Healthy Again (MAHA) website, asking whether he would support the preservation of state-run, congregate and group home care for persons with intellectual and developmental disabilities (I/DD).
RFK, who has been nominated by President-elect Donald Trump to head the U.S. Department of Health and Human Services (HHS), has spoken out about what he refers to as the capture of governmental agencies and regulators by the pharmaceutical, agricultural and other industries. He has cited the undue influence of corporate interests in healthcare, in particular.
While there are many people who are skeptical of Kennedy, primarily due to his controversial statements about COVID and other vaccines, our main concerns center around the future of residential care for people with I/DD. Would Kennedy’s efforts to rein in corporate interests in healthcare include reining in corporate providers that contract with states to run group homes for people with I/DD?
In our message to Kennedy, we asked whether he would be “committed to changing the direction in which HHS and the U.S. Department of Justice (DoJ) have long been headed in furthering the runaway privatization of human services and the closures of state-run services for people with I/DD, including Intermediate Care Facilities (ICFs).”
We understand that there are many people competing for Kennedy’s attention right now, and that it might be some time before we hear back. We hope we do hear back.
Privatization proponents acknowledge problems, but oppose the use of institutional resources
As we noted in our message to Kennedy, the privatized system of care in Massachusetts and elsewhere in the nation for people with I/DD is broken.
In Massachusetts, the state Department of Developmental Services (DDS) is funding the privatized group home system at close to $1.7 billion in the current fiscal year — an increase of more than 60% from a decade previously. Yet, thousands of people are waiting for residential placements in group homes that are rife with abuse and neglect and underpay their direct-care staff. The executives who run those corporate providers make exorbitant salaries.
Massachusetts has just two remaining state-run ICFs, which serve as a critical backstop for residential care, and meet strict federal standards for staffing and treatment. They are the Wrentham Developmental Center and the Hogan Regional Center. Yet a succession of administrations has let these facilities die slowly by attrition, and has steadily increased funding to corporate group-home providers.
Also being phased out in this state is a smaller network of state-run group homes, which provide care from well-trained staff. Families and guardians seeking residential placements for their loved ones with I/DD are not informed of these state-run options, and, when they do seek those placements, are routinely denied.
Federal government has pushed for ICF closures
As we noted to Kennedy, this same anti-congregate care trend has long been encouraged at the federal level. The federal Centers for Medicaid and Medicare Services (CMS) and the Civil Rights Division of the DoJ have pursued a relentless policy for years of deinstitutionalization and privatization of services. This policy has been promoted under the guise of civil rights, with the misleading argument that congregate care segregates people with I/DD.
Not only has the DoJ filed unnecessary and unwanted lawsuits around the country to close ICFs, but the federal government has encouraged the closures of important and highly successful programs such as sheltered workshops for people with I/DD. This has been done under the mistaken ideology that all people, no matter how severe their disabilities, can compete and succeed in the community-based system.
However, the U.S. Supreme Court in Olmstead v. L.C. recognized that institutional care is valid and appropriate for those who desire it and who can’t cope in the community.
Yet the single-minded focus of the federal government and other proponents of privatization on eliminating institutional care has caused the proponents to ignore the serious problems with community-based care.
Biden administration increased funding for community-based care, but not state-run ICFs
Over the past four years, the Biden administration increased Medicaid funding to states for home and community-based services. But as COFAR and a key state employee union, AFSCME Council 93, noted in a joint letter to Massachusetts Senator Elizabeth Warren in 2021, the Biden administration was not similarly proposing any additional funding for state-run ICFs.
Many advocates for the disabled are worried today that the incoming Trump administration will reverse the Medicaid gains that the home and community-based system has received under the Biden administration. They are particularly concerned that under the leadership of Kennedy and Mehmet Oz, who has been nominated to head the CMS, Medicaid funding to the states will be replaced by block grants, and individual recipients will be subject to work work requirements.
While we understand these concerns, we would also note that pumping more Medicaid dollars into a flawed, privatized system won’t solve the problems that continue to plague that system.
As we stated in our message to Kennedy, we believe that the states need to reopen the doors of their state-run ICFs and group homes before it is too late. If we lose these critical residential options, we foresee a race to the bottom in the quality of care for thousands of our most vulnerable residents.
However, the Healey administration in Massachusetts, like several before it, takes its cue from the federal government, and is pushing us ever closer to the demise of state-run and ICF-level care.
COFAR blog 