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Former DDS official asks why an intellectually disabled man can’t get basic services
Ken Moran, a former assistant area director with the Department of Developmental Services (DDS), has been an advocate for Steven Voisine and for Steven’s mother Deborah for several years.
Now living in Florida, Moran still keeps in touch with them, and wants to know why Steven today can’t get the basic services he needs from the Department.
Steven, 37, once had an ideal living arrangement in an apartment with roommates in Lowell. But it all fell apart in 2020, after a DDS-funded corporate services provider allowed a known drug user and dealer to live in the residence.
The drug dealer, whose name was Nick, died of a drug overdose that year. But Ken, and Steven’s mother Deborah, said the provider, the Cooperative for Human Services (CHS), falsely blamed Steven for Nick’s problems; and Steven was forced to move out. Meanwhile, they said, Nick had been stealing Steven’s antipsychotic medications.
No longer getting services
Having lost what had initially been an ideal residential arrangement, Steven went on to live in an array of residential settings, Deborah and Ken said. He experienced temporary homelessness and received minimal case management.
Even though he is 37 years old, he moved into his current apartment in an elderly housing building in Gardner. Ken noted that there is no staff support for him during the day.
Although Steven is under the care of the DDS North Central Area Office in Fitchburg, “They (the area office) don’t know what to do with him or with their other clients,” Deborah maintains. “They just tell us they are overbooked.”
Ken said DDS has most recently offered to find a MassHealth-funded day habilitation program for Steven. But that’s not what he wants or needs.
“He needs someone to actually listen to him,” Ken said. “He needs an apartment with shared responsibilities. He needs someone to help him get his place in order.”
Steve and Deborah Voisine and their pets, Tom (left) and Oscar (right)
Ken noted that Steven “gets overwhelmed,” is obsessed with electronics, but has no concept of money. He is also unable to keep his apartment clean, and has no social activities or services.
Ken, who is also a former DDS group home licensure and certification inspector, recently retired as chief operating officer of Opportunity Works, a DDS day program provider.
Deborah has track record of accuracy
Ken maintained that Deborah has fought for years for adequate care and services for her son. “Debbie has been pooh-poohed by DDS for years,” he said. “But there is always truth in what she is saying.”
He maintained that Deborah has always tried to alert the Department and providers to potential problems with Steven’s care. One threat she noted was the admission of Nick to Steven’s shared living apartment.
Deborah said Steven had been happiest when living in the Lowell residence with two other DDS clients. Overnight staff stayed on the third floor of the building. There were 20 hours of staffing during the week. But when Nick was admitted, he brought in pot parties, drug addicts, and prostitutes, Deborah said. Ken said Nick had a history of drug abuse and arrests. His mother would bring pot to him.
Steven and Deborah believed Nick was stealing Steven’s medications to sell to drug dealers, so Deborah bought a lockbox for Steven to keep the medications in. They contended DDS knew Nick was a drug user, but still placed him in the apartment.
False accusation against Steven
One day in the fall of 2020, Ken, who had previously retired from DDS, drove Steven to Deborah’s house in Leominster for a weekend visit.
Steven brought his bag of clothes with him in a duffel bag. That Sunday, he called the manager of the shared apartment to ask if he could stay longer, and asked whether the staff could bring his medications to him.
Deborah said that when the manager went into Steven’s room to retrieve his lockbox, she found that the lockbox was gone. The manager called Steven to ask where it was, and he replied that he had left it on his dresser.
Deborah said the staff did a search of the entire building including the garbage and cellar. The lockbox was never found. But the staff nevertheless accused Steven of having taken the lockbox in order to place the blame on Nick for having taken his medications.
Ken and Deborah maintained that accusation against Steven wasn’t true. Steven subsequently had no antipsychotic medications for 10 days, and his psychiatrist wouldn’t prescribe any more.
Nick died of a drug overdose a few months later, in December 2020. Steven’s pill bottles found in Nick’s room when he died, Deborah said.
As noted, Steven was forced to move out of the residence. In our view, this amounted to an eviction by the provider. We think DDS should have informed Deborah of her right to challenge it.
What Steven needs
Ken and Deborah maintain that it wouldn’t be difficult or expensive to serve Steven properly. DDS would need to gain an understanding of his needs. As Ken explained, Steven needs the following services:
- Help managing money
- Help in keeping his apartment clean
- Assistance with hygiene
- Help in making friends
- Help in dealing with depression and weight gain
- Help in dealing with anxiety
- Help with medical and dental care
“He had this kind of support when he lived in Lowell,” Ken said. “He needs good roommates and some staff support. The right living situation could work for him.”
‘The forgotten children’
Deborah said there are many other DDS clients under the care of the North Central Area Office in Fitchburg, who are in the same situation as Steven. “We call them the forgotten children,” she said. She said she was told the service coordinators in the area are overwhelmed. Some have as many as 70 clients.
Both the director of the Area Office and the assistant director have left the office, and have not been replaced, she said. There is currently an acting director.
Deborah said she recently met with DDS Central West Regional Director Anthony Keane, who maintained that the only options for Steven are living by himself or in a group home. Neither option are suitable for Steven, Deborah said.
For the past several years, DDS has become increasingly unable to meet the needs of its clients. Long wait times for services are now the norm.
As we have said before, DDS has been contending with a shortage of staffing and resources, but has not attempted to make use of its existing assets such as the two remaining developmental centers or its state-run group home system. The Department routinely rejects requests for placements in its state-run residential facilities.
When basic services are unavailable for longtime DDS clients like Steven, and when terms like ‘forgotten children’ are used to describe them, it should be a wake-up call to the administration. Unfortunately, this administration appears content to muddle through, and is apparently not listening to many of its clients or aware of what their needs really are.
New report details ‘hidden costs’ in group home care for people with developmental disabilities
Is it really more costly per resident to operate state-run congregate care centers, such as the Wrentham and Hogan centers, than to operate group homes for people with intellectual and developmental disabilities (I/DD)?
That is one of the key assumptions behind decisions by a succession of administrations in this and other states to close state-run Intermediate Care Facilities (ICFs) and move the residents into privatized Home and Community Based Services (HCBS) settings.
But a new cost analysis of ICF versus HCBS group home care in Massachusetts supports previous calls by COFAR to reexamine that assumption. The report, “Hidden in Plain Sight: The True Cost of I/DD Services in Massachusetts and the Case for Restoring Choice,” was produced by COFAR’s partner organization, The Saving Wrentham and Hogan Alliance (The Alliance).
The report makes the overall point that the community-based group home system incurs an estimated $1.3 billion in taxpayer costs each year that are not included in the Department of Developmental Services (DDS) $3.3 billion budget.
COFAR made similar critiques a number of years ago of cost-comparisons issued by the then Patrick administrations to justify decisions to close the former Fernald Developmental Center and three other ICFs.
Today, Wrentham and Hogan are the only two remaining ICFs in Massachusetts, and we are concerned that the Healey administration is letting those facilities die by attrition.
The cost justification for closing the ICFs has been based on comparisons of two line items in the state budget: 1) the community-based residential line item (5920-2000), and 2) the ICF or state facilities line item (5930-1000). But while that analysis provides an accurate account of the cost of serving ICF residents, it is inaccurate as a basis for calculating the cost of serving clients in HCBS group homes.
As the Alliance report explains, ICF costs are bundled into a single rate, which is reflected in the ICF line item in the state budget each year. Those include staffing costs, clinical care, food, housing, and facility costs. All of those costs are included in the state-funded line item for Wrentham and Hogan. The full cost of care is visible in one place.
In contrast, the costs of serving people in group homes show up in several state and federal budgets, including MassHealth, Housing and Urban Development (HUD) subsidies and in SNAP benefits, in addition to the DDS community residential line item. So the argument by ICF opponents that those facilities are more expensive per client than group homes is flawed because only the DDS line item spending per resident is considered in each case.
The Alliance report points out that there are many areas in which spending on group homes occurs outside of the DDS community-based residential line item. A number of those “hidden costs” are calculated in the report, including the following:
- $411 million in day habilitation costs paid by MassHealth
- $385 million–$595 million in medical costs, and $28 million–$75 million in dental costs for adults with I/DD
- $53 million in SNAP benefits
- $33.6 million in transportation costs
- $750,000–$4.5 million in police response to group home crises
The Alliance also discussed a number of other structural reasons for higher-than-expected costs of residential care in HCBS settings, including the high salaries of the executives of corporate residential providers funded by DDS.
A 2022 COFAR survey found that between Fiscal Years 2012 and 2020, total compensation of CEOs, executive directors, and other corporate provider executives in Massachusetts rose from $102.4 million to $125.5 million. That is a 23% increase. Also, the survey found that the average compensation paid per executive rose from approximately $161,000 to $184,000 — a 14% increase.
The Alliance report also found that the HCBS system shifts costs for clinical, medical, and police behavioral responses to cities and towns. HCBS providers are not required to have on-site nursing or medical staff, behavioral crisis responders, or emergency response staff, all of which are provided by ICFs. Instead, the HCBS system relies on calling 911 and on local police, EMS and emergency rooms in hospitals and clinics.
This is why it is misleading to compare the ICF line item with the line item for group homes and divide by the number of residents. A valid comparison must include all major service components, including day habilitation and other supports funded outside the DDS community-based residential line item.
Comparing the DDS ICF budget to multiple budgets that affect group homes leads to the misleading conclusion that the cost of ICF care is higher per resident than group home care, when that isn’t necessarily the case. The Alliance report doesn’t dismiss the ICF costs; rather it says many group home costs are hidden in other budgets, which makes those costs less transparent.
Apples-to-apples cost comparisons are needed
The hidden costs that the Alliance report calculates, some of which COFAR has reported as well, may not prove ICFs are less expensive than HCBS group homes on a per-resident basis, but they effectively rebut the claim that closing ICFs saves money. Without a comprehensive, apples-to-apples analysis, claims of cost savings from closing ICFs are not adequately supported.
The Alliance report makes the reasonable and sensible recommendations to:
- Increase transparency across all funding streams supporting I/DD services, including MassHealth, SSA, HUD, USDA, municipal budgets, and development finance agencies.
- Restore access to state-operated ICF care as a choice for individuals with severe and profound disabilities. COFAR is proposing language in the Fiscal Year 2027 state budget stating that persons found to be eligible for ICF-level care have a right to that care in Massachusetts.
- Reinvest public funds to improve direct care wages, reduce turnover, and strengthen clinical supports.
- Conduct independent audits of HCBS provider finances, real estate holdings, and service delivery practices.
The report correctly concludes that:
Massachusetts’ I/DD service system is far more costly and fragmented than the public budget suggests. By acknowledging hidden costs, restoring balanced service options, and strengthening oversight, the commonwealth can better serve individuals with I/DD, support families, and ensure responsible stewardship of taxpayer dollars.
The Alliance report provides important new data rebutting the argument that state-run, ICF-level care is necessarily more expensive than privatized care.
Key contract documents appear to be missing in DDS guardianship arrangement
Key contract documents appear to be missing involving the procurement of a corporate guardian that has restricted the visitation rights of at least two clients of the Department of Developmental Services.
We have reviewed procurement documents involving TLC Trust, Inc., which has been under a 10-year contract with DDS since 2018 to provide guardianship services to DDS clients. Those documents raise several questions concerning the procurement process.
Neither DDS nor the state comptroller has produced or identified a Master Agreement between DDS and TLC Trust, despite a statement in a DDS guardianship bid solicitation in 2018 that qualified bidders would sign such an agreement.
The bid solicitation, known as a Request for Responses (RFR), also stated that a Procurement Management Team (PMT) would “evaluate proposals in detail and make recommendations for selection.” While DDS did provide the RFR and bid documents submitted in response to it by TLC Trust, DDS did not provide us with any documents reflecting an evaluation of TLC Trust’s bid, beyond a brief award determination.
We previously reported on family visitation restrictions affecting Naomy Alecia and Ryan Moran, two clients for whom TLC Trust has been serving as guardian. We have expressed concerns that those restrictions may be inconsistent with DDS regulations concerning visitation rights.
In December, we asked DDS in a public records request for all current contracts between DDS and TLC Trust. DDS provided only Page 1 of a 5-page Standard Contract Form with the nonprofit organization. That page contained no scope of services or terms and conditions for the provision of guardianship services.
We also asked DDS in January for all bid solicitations and evaluation documents relating to the selection of TLC Trust. As noted, DDS did not produce any evaluation documents.
Because DDS had produced only the first page of a Standard Contract Form, we filed a public records request with the state comptroller in February to find out whether the Comptroller’s Office might have the Master Agreement. On March 5, the Comptroller’s Office responded to our request, stating that it did not have any contractual documents between DDS and TLC Trust to provide guardianship services.
In reviewing the procurement materials that DDS did send us, we also noted the following:
- Of four resumes submitted by TLC Trust in response to the 2018 RFR, only one explicitly referenced guardianship activities, and one did not even reference TLC Trust. At the same time, TLC’s RFR submission stated that the organization had served as guardian to 65 individuals between 2012 and 2018.
- TLC’s RFR response stated that the organization “accompanies individuals for medical care.” In Ryan Moran’s case, his mother reported that TLC Trust has prohibited the family from attending medical appointments.
- The RFR stated that guardians receiving reimbursement under the contract must adhere to DDS’s Standards to Promote Dignity, which include provisions concerning visitation rights. As noted, the cases of Naomy Alecia and Ryan Moran have involved restrictions on family visitation that their families contend are inconsistent with those standards. This raises questions about how DDS monitors compliance with those requirements for guardians operating under the contract.
No answers to questions
On March 4, I emailed DDS Commissioner Sarah Peterson, asking the following questions:
1. Did DDS execute a Master Agreement with TLC Trust pursuant to the RFR? If so, where is that agreement kept?
2. Were detailed evaluation materials created of TLC Trust’s RFR submission? If so, can DDS confirm their existence?
3. Did DDS verify TLC Trust’s representation that it was serving as guardian to 65 individuals as of 2018?
4. Which TLC Trust employees have served as guardians of DDS clients since 2018, and what is the approximate client caseload per staff member?
5. How does DDS assess whether guardians receiving reimbursement under this contract are adhering to the Standards to Promote Dignity referenced in the RFR?
To date, I have not received a response from Peterson or the Department to my questions.
Lack of information raises further questions
A lack of answers and information from both DDS and TLC Trust only raises further questions and confusion about the organization’s role and qualifications.
In January, I emailed Gayle Greene, executive director of TLC Trust, and Diane Parker, who is listed as a case manager there. I noted that we were urging TLC Trust to ensure that their visitation policy conforms to the Department’s regulations, and we were asking that they re-examine and remove any visitation restrictions that have been placed on these two families. We believe these restrictions are causing stress and hardship to Naomy and Ryan and to their families.
I also asked how many DDS clients TLC Trust currently provides guardianship services for. We have reported that payments from DDS to TLC Trust from Fiscal Year 2022 through the current fiscal year have totaled $532,000. That averages out to close to $125,000 a year for the four full fiscal years from 2022 to 2025.
Both Greene and Parker are listed in court documents as performing guardianship services to Ryan Moran. Naomy’s mother, Lizvette Rivera, said Parker was providing guardianship services to Naomy. Neither Greene nor Parker responded to my January email query.
Despite the lack of mention of guardianship experience in most of the resumes submitted to DDS, TLC Trust stated in a one-page description of the organization’s history and qualifications that it started providing guardianship services to DDS clients in 2012, and was providing those services as of 2018 to 65 people. The one-page description added that:
Staffed by an Executive Director and three case managers (resumes attached), we consider ourselves “hands on” guardians. …DDS refers to TLC Trust on average between two and five new individuals per month for guardianship services. We have come to be known as an agency that will provide services to individuals who have dual diagnosis and whose situations could be described as “difficult”.
Given that only one of four resumes mentioned guardianship experience as of 2018, TLC Trust’s claim that it was providing those services to 65 people as of that year raises questions about the quality of those services and who was actually providing them.
We have urged DDS to investigate TLC Trust’s actions as guardian to Naomy and Ryan.
The RFR stated that DDS would reserve the right to remove any selected guardian if the guardian’s “conduct should fall below that expected of a fiduciary at the Department’s and the Court’s discretion.” In our view, in restricting family visitation, TLC Trust has displayed conduct that appears to fall below that expected of a fiduciary.
However, given that there is no complete contract that has been produced in this case, we don’t know whether such a contract contains a term similar to the RFR in which DDS reserves the same right to remove TLC Trust.
In an editorial today, The Boston Globe decried the state’s poor track record in responding promptly to public records requests, and in providing information to the public in general. As the Globe noted, “Well-managed public entities should certainly be able to respond to requests for information in a reasonable amount of time, at a reasonable, or no, cost.”
Unfortunately, there seems to be no better example, in our experience, of this disinterest in transparency in government than the Massachusetts Department of Developmental Services.
DDS has minimal contractual documentation regarding corporate guardian that has supported severe visitation restrictions on two families
The Department of Developmental Services (DDS) has produced only one page of an apparently larger contract with a corporate guardian that has supported severe visitation restrictions on two separate families.
TLC Trust, Inc., which was hired by DDS in 2018 as a guardian of at least two group home residents, has continued to support restrictions on family visits to them. We have raised concerns that the restrictions violate DDS regulations that establish visitation as a right of both DDS clients and their families.
Payments from DDS to TLC Trust for the past five years for providing guardianship services have totaled $532,000, according to information provided by DDS under a Public Records Law request. That averages out to close to $125,000 a year from Fiscal Years 2022 to 2025. (Several years ago, we investigated DDS’s secretive system for paying professional guardians.)
In response to our Public Records request for all contract documents with TLC Trust, DDS last month provided only what appears to be Page 1 of a 5-page “Standard Contract Form” with the organization for guardianship services.
While the contract page refers to a “brief description of contract performance” and a “detailed description of contract scope…,” neither a contract performance description nor a contract scope description was provided in DDS’s response. The contract page also refers to a “Master Agreement Contract with standard rates.” That was not provided either.
On January 14, we appealed to the state’s Public Records Division, arguing that the DDS response appeared to be incomplete. On January 28, DDS responded to our appeal, stating that the Department has no further responsive records. That same day, the state Public Records Supervisor closed our appeal.
There are questions about the competitive solicitation process used in selecting TLC Trust to provide guardianship services. We have filed a new Public Records request with DDS for all procurement documents involving TLC Trust, including Requests for Proposals (RFPs) and evaluations of responses.
It appears DDS issued a Request for Responses (RFR) for guardianship services in 2018 or 2019, and TLC Trust appears to have been among the respondents. However, DDS has not provided TLC Trust’s response, qualifications materials, or any evaluation or award documentation.
Severe visitation restrictions continue
We previously reported that TLC Trust, Inc., appeared to have been involved in preventing the families of Ryan Moran and Naomy Alicea from visiting them on Thanksgiving Day last year. The families were similarly prevented from visiting Naomy and Ryan at Christmas.
The families maintain in each case that the visitation restrictions resulted from their complaints that their loved ones have been subjected to abuse or neglect in their provider-operated residences.
Naomy, 37, has an intellectual disability (ID) and cerebral palsy. Ryan, 29, has ID and is on the autism spectrum. DDS placed Ryan in a group home run by Venture Community Services in 2020, when he was 24. Naomy has been living in a separate group home in Worcester, which is operated by the Seven Hills Foundation. Both Venture and Seven Hills are DDS-funded residential providers.
Members of both families contend that their guardianships of their loved ones were removed for questionable reasons. DDS successfully petitioned the Worcester Probate Court to appoint TLC Trust as the corporate guardian of Ryan and Naomy.
Since 2022, Gayle Greene, Executive Director of TLC Trust, and Diane Parker, identified on TLC Trust’s website as a case manager, have provided guardianship services to those individuals on behalf of TLC Trust, according to Worcester Probate Court records.
Naomy’s mother, Lizvette Rivera, said last month that she was allowed to see Naomy only twice that month. She was not allowed to visit her at her group home.
Ryan’s mother, Hilda Natal, said she and Ryan’s father, Jose Moran, have been barred from visiting him since early October for reasons that were never specified. While that ban was supposedly ended on January 9, it is still not clear when visits will be allowed to resume. They said DDS and Venture officials told them they would be allowed one supervised visit a month, but, “We were told it could be February or March,” Hilda said.
We believe the visitation restrictions violate DDS regulations, which state that DDS clients have the “right to be visited and to visit others under circumstances that are conducive to friendships and relationships.” Also, the individual’s family members “shall be permitted to visit at all times, unless the individual objects…”
Commissioner and TLC Trust contacted
In November, I wrote to DDS Commissioner Sarah Peterson to urge that DDS allow Ryan’s family to visit him on Thanksgiving Day. Since then, we learned that a similar prohibition on visits had been imposed on Naomy’s parents, and that TLC and Parker were involved in each case in imposing the restrictions.
In December, Peterson responded, saying she had “followed up with the local teams on the specifics of these cases. While I know you understand that I cannot comment on specific cases, please be assured that they are engaged and will follow up,” she wrote.
Both Hilda and Lizvette said no one from DDS has contacted them since December to discuss their concerns.
On January 27, I emailed Greene, executive director of TLC Trust, and Parker. I urged them to ensure that TLC’s visitation policy conforms to the Department’s regulations, and that they re-examine and remove the visitation restrictions on the two families.
I also asked Greene and Parker whether TLC had responded to a competitive solicitation from DDS to provide guardianship services in these and any other cases. To date, I haven’t received a response from them.
TLC contract issues
The single contract page for guardianship services from TLC Trust that DDS provided to us was signed by Greene in February 2018. Peterson was listed on the contract page as the contract manager. Peterson became commissioner of DDS last April. In 2018, she was serving as a deputy general counsel for DDS.
In her response to us in December, Peterson maintained that “TLC Trust qualified through state procurement procedures to receive and accept appointments from DDS.”
But given the lack of DDS’s contract documents, there appear to be questions about the bid solicitation process.
In DDS’s original response to my Public Records request, the Department provided a link to its RFR information on the state’s online COMMBUYS site. COMMBUYS is the state’s electronic posting and bidding system for goods and services. It is operated by the Operational Services Division (OSD).
The RFR did describe the scope of what it said is a master agreement that winning bidders must sign, and stated that bidders must state their qualifications. However, as noted, DDS did not provide us with TLC’s response to the RFR. The RFR requested respondents to list their qualifications to provide guardianship services, among other information.
As a result, we filed new Public Records requests last week with both DDS and OSD for all procurement documents that relate to the selection of TLC Trust for guardianship or professional guardian services.
On January 29, I received a response from OSD that they did not have any procurement documents involving TLC Trust. That leaves DDS, which has until February 9 to respond to us, under the Public Records Law.
We also filed a separate Public Records request last week with the state comptroller for possible contract records concerning TLC. The one contract page that DDS provided states that, “Commonwealth Terms and Conditions (T&C) has been executed filed with CTR (the state comptroller) and is incorporated by reference into this Contract.”
As we’ve said previously, it is unclear why TLC was appointed as guardian of these clients. TLC’s website states that the organization primarily administers trusts with a minimum value of $100,000 for persons with developmental and other disabilities.
While the TLC website says the organization can also act as a corporate guardian for persons, the website further states that, “First priority for this (guardianship) service will be given to those individuals who have a trust relationship with the organization.” No such trust account with TLC exists in either Ryan’s or Naomy’s case.
Given that there was a competitive procurement process used in hiring TLC Trust to provide guardianship services, it will be helpful to know what TLC Trust’s qualifications are, what its response was, and how DDS evaluated it. If there are no such documents that can be produced, that would raise even more questions about this matter.
DDS withholds information on investigation of its data on the census of state-operated group homes
In the wake of questions raised by COFAR, the Department of Developmental Services (DDS) appears to have conducted an internal investigation of its apparently contradictory data on the total number of residents in its state-operated group homes.
The Department, however, has declined to provide any records of that investigation to us, citing attorney-client privilege. An attorney for the Department, meanwhile, has not responded to a query I sent her on the matter on January 5.
As we reported last fall, a new set of census data provided by DDS in September has produced confusion over whether the total number of residents, or census, in state-operated group homes has been rising or falling. Data provided by DDS in previous years consistently showed the total census of the homes had been steadily falling.
However, the new data set from DDS in September indicates that the census of 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 year. (See graph below depicting the two contradictory sets of data from DDS.)
The DDS state-operated group home network is far smaller than the privatized group home system, which is managed by DDS-funded corporate providers. However, we consider the state-operated homes to be critically important in maintaining the fabric of care in the DDS system.
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. We are concerned that the Healey administration is allowing the state-operated group home network to die by attrition.
Due to the apparent discrepancy in the data, we filed a Public Records Law request with DDS on November 13 for documents pertaining to apparent changes made by the Department to its census data for state-operated group homes between Fiscal Years 2020 and 2023.
DDS responded to us on December 29, indicating that they had located 74 internal emails and email attachments that were responsive to our records request. But an assistant DDS general counsel stated that, “All responsive records, including emails and email attachments, are withheld on the basis of the attorney-client privilege.” Each email involved a communication between a DDS attorney and another DDS official or attorney.
Subject matter listed as ‘investigation’
A document provided by the assistant general counsel as part of the December 29 response provides brief descriptions of the subject matter of each of the emails that were considered responsive. For 36 of the 74 emails and attachments, the subject matter is described as “Communication re: investigation of PRR census data for counsel.” (my emphasis)
The document provides no explanation as to what is meant by “investigation” or what aspects of the census data were or are being investigated.
On January 5, I emailed the assistant general counsel, asking whether DDS has opened an investigation of the apparent changes made in its census data for state-operated group homes, specifically for Fiscal Years 2020 through 2023. I also requested an explanation for the contradictory nature of the two sets of data. To date, I haven’t received a response to my query.
Appeal denied
As the graph above shows, DDS provided contradictory sets of data in two responses to our public records requests in November 2023 and September of last year. The largest discrepancy in the data concerns Fiscal Year 2020, for which the 2023 DDS response listed the total census of the state-operated homes as 1,026, while the 2025 response listed the total census as 857.
The graph further illustrates how that difference of 169 residents in the two data sets for Fiscal Year 2020 established two contradictory trends in the data from that year onward. The solid red line representing the 2023 DDS response shows a downward trend in the census, whereas the dashed green line representing the 2025 response shows an upward trend.
As as result of that discrepancy in DDS’s responses, we filed an appeal with the state Public Records Division last September, asking asking 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 by DDS.
On October 14, we asked the Public Records supervisor to reconsider her denial. We noted that by producing two conflicting sets of census data for overlapping fiscal years, DDS had failed to demonstrate that it had furnished the actual records it maintains as required by the Public Records Law.
On October 31, the Public Records Supervisor denied our request for reconsideration without responding to our argument about the failure to assist in meaningfully identifying the records we had received. She stated only that, “There is a presumption that public officials perform their duties in an honest and impartial manner.”
As a result of the denials of our appeal and request for reconsideration, we filed the November 13 public records request, asking for all documents pertaining to the apparent changes in the census data.
Administration’s secrecy reduces public trust
So far, the only thing we have learned from this whole exercise is that DDS may have conducted, or may be conducting, an investigation of some kind regarding that data. As usual, the Department appears to have found a way to prevent the public from learning what is actually going on.
This is particularly unfortunate given that the Department’s secrecy prevents the public from knowing a basic fact about the future of the state-operated group home system and by extension state-run services in general. Whether the census in the group home system is rising or falling has direct implications for the system’s viability in coming years.
Despite the September data that was provided to us, it seems most likely to us that the census in the state-operated homes has been steadily falling. We have heard that several homes have been closed in recent years, that staffing has been cut, and that it is difficult, if not impossible, to gain admission to those residences.
In July 2024, we reported that Governor Maura Healey had cut more than $400,000 from her proposed funding for state-operated group homes in the Fiscal Year 2025 budget. That cut resulted in final funding for the homes that was $2.4 million less than the governor’s initial proposal, despite an overall 4% increase from the previous year.
A year later, we reported that the Legislature had adopted a lower funding increase for the state-operated homes for Fiscal 2026 than what the governor originally proposed. The Legislature instead prioritized the larger corporate-run system, as usual.
These occurrences are not a prescription for a rising census in the state-run group homes. Yet DDS’s latest data say that is just what happened, without offering an explanation for it.
We continue to fail to understand why the administration feels it is necessary to withhold vital information like this from the public. We don’t see how anyone benefits from a policy that reduces the public’s trust in government.
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.
COFAR blog 