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Children and Families Committee had already made up its mind on Supported Decision Making legislation
On Tuesday of last week, Irene Tanzman and I testified before the Legislature’s Children, Families, and Persons with Disabilities Committee against a bill (H.261) that would authorize Supported Decision Making (SDM) in Massachusetts.
The Committee scheduled us last to testify on that bill. I counted 21 people who testified in favor of it. We were 22nd and 23rd, and were the only ones to raise any critical questions about the legislation.
Irene, a COFAR member, testified on behalf of the National Council on Severe Autism. She has also founded the Saving Wrentham and Hogan Alliance, an organization dedicated, as we are, to preserving those two congregate care facilities as options for residential care in Massachusetts.
In our view, the actual purpose of the SDM legislation is ultimately to eliminate guardianships of persons with intellectual and developmental disabilities (I/DD). We maintain that guardianships, however, are the most effective source of authority that family members have to ensure that their loved ones receive adequate care in the Department of Developmental Services (DDS) system.
Co-chairs favor the bill
The Children and Family Committee members asked no questions of either Irene or myself about our position on H.261, yet it’s clear both co-chairs, Senator Robyn Kennedy and Representative Jay Livingstone, strongly favor the legislation.
Livingstone is the main sponsor of the House bill, and Kennedy said a couple of times during the hearing that she hopes this is the year the legislation passes. Kennedy even made a joke that the apparently non-progressive state of Texas has gone ahead of Massachusetts in passing SDM legislation. “We certainly don’t want to fall behind Texas in anything,” she said.
But is SDM really progressive, or is it a back-door means of taking decision-making power away from families? SDM authorizes written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters are expected to provide those individuals with “decision-making assistance” about their care and finances.
We have long pointed out numerous problems and a lack of safeguards in the legislation, which has been repeatedly introduced over the years in Massachusetts. In recent years, the measure has gotten closer and closer to final passage.
Both Irene and I testified that while we think the concept of SDM may be appropriate for high-functioning individuals who may not need guardianship, we are concerned that the legislation does not make any distinction among levels of cognitive impairment.
Perhaps the most onerous provision in H.261, as we have pointed out to key legislators, is that it would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian. The legislation specifically would require those petitioners to state why a more limited guardianship or an SDM agreement is “inappropriate.”
We think that provision may predispose probate court judges to deny guardianship petitions in favor of SDM arrangements.
Thirdly, the legislation does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to DDS.
Unfortunately, none of our proposed improvements or safeguards has ever been adopted by the drafters of the legislation.
Committee asked only one question of anyone
To be fair, only one member of the the Children and Families Committee, Representative David LeBoeuf, asked a question of any of the people who testified on the SDM legislation on Tuesday. Those individuals who testified, all of them supporters of the legislation, included representatives of the Arc of Massachusetts, and a number of legislators, including Senator Joan Lovely and Representative Sean Garballey.
LeBoeuf asked Morgan Whitlatch of the Center for Public Representation, a leading proponent of SDM in Massachusetts, whether she thought provisions in the bill to prevent conflicts of interest and coercion of persons with I/DD are sufficient. Whitlatch responded that she believes those provisions in the legislation are “quite robust.” We would disagree with that assessment.
That lack of questioning of either us or of the supporters, and Kennedy’s cheerleading of H.261 during the hearing, which wasn’t contradicted by anyone else on the Committee, conveyed the impression to us that the Committee has already made up its mind in favor of the legislation. Scheduling the SDM legislation for the Tuesday hearing was strictly a formality.
There is no doubt the Committee will report favorably on H.261 and its companion S.155, and will make no changes to those measures; and the legislation will move on, as it has in the past, through the committee process. We intend to continue to follow the progress of the legislation and alert other committees about it.
Other bills, which we support
During Tuesday’s hearing, the Children and Families Committee heard testimony on other bills as well, a number of which we have supported or would support. Those bills include the following:
H.282, also known as “Tommy’s Law”:
This bill would require that when a disabled individual is discharged from a hospital to a residential facility, a licensed medical professional from the facility must review the hospital’s discharge plan for any life support or other medical equipment. The medical professional must then advise the residential staff about those requirements.
Several years ago, we reported that Maureen Shea’s son, Tommy, who was then 33, was found dead, face-down on his bed, in his DDS-staffed apartment in June 2017. Tommy had an intellectual disability and was subject to epileptic seizures while asleep.
Tommy’s bedroom was equipped with an audio and visual monitor that could alert the staff so that they could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.
Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries, and that they had not been adequately trained in how to position the device. But the nonprofit provider that employed the staff had repeatedly assured Maureen that the staff were trained and were knowledgeable about Tommy’s medical equipment.
After Tommy died, the batteries in the monitor were found to be dead.
Maureen has been advocating for this legislation for many years. She was there to testify in favor of it last Tuesday. We don’t understand why this bill has still not been enacted into law.
H.198, a bill authorizing video cameras in group homes:
This legislation, which has also been repeatedly refiled for many years, would require video cameras to be installed at all entrances, exits, and common areas of residential facilities operated or funded by DDS. As we noted in 2019, we support the bill in concept although we’re not sure how effective the measure, as currently drafted, would be because it would not require security cameras in bedrooms.
H.256, Universal changing stations:
This bill would require that any state-owned public building containing a public bathroom that was constructed or remodeled after January 1, install at least one universal changing station.
A universal changing station is an adult-sized changing table designed to hold at least 350 lbs. It would be located within an enclosed restroom facility and would be for use by persons of any age who require assistance with diapering, and would be accessible by persons of any sex.
Flawed Supported Decision Making Bill once again set for a hearing on Beacon Hill
A legislative committee will hold a hearing next week on seriously flawed, proposed legislation that would introduce Supported Decision Making (SDM) in Massachusetts and make it harder to become a guardian of a person with an intellectual disability.
The Children, Families, and Persons with Disabilities Committee has scheduled the hearing for Tuesday, September 9, at 1 p.m. in Room B-2 of the State House in Boston. We are urging our members and others to attend and testify against the bill (H.261).
Two other bills (S. 155 and H. 264), which would also authorize SDM, are also on the September 9 hearing list. We are urging that those bills be opposed as well.
[IMPORTANT NOTE: To sign up to provide oral testimony, you must fill out this online form prior to Thursday, September 4th at 2:00PM. Same-day, in-person testimony will be accepted, time permitting. Also, you will not be able to sign up for virtual testimony on the day of the hearing.]
As noted below, we think the actual purpose of this legislation is ultimately to eliminate guardianships of persons with intellectual and developmental disabilities (I/DD). We believe guardianships, however, are the most effective source of authority that family members have to ensure that their loved ones receive adequate care in the Department of Developmental Services (DDS) system.
SDM authorizes written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters are expected to provide those individuals with “decision-making assistance” about their care and finances.
We have long pointed out numerous problems with the legislation, which has been repeatedly introduced over the years to implement SDM in Massachusetts. In recent years, the legislation has gotten closer and closer to final passage.
While we think the concept of SDM may be appropriate for high-functioning individuals who may not need guardianship, we are concerned that the legislation does not make any distinction among levels of cognitive impairment.
The implication of the legislation is that all persons with developmental disabilities can benefit equally from SDM. However, as noted below, there has been a dearth of research as to whether SDM arrangements really do benefit people with severe or profound levels of I/DD. In fact, it seems possible that SDM can increase the risk those people face of financial exploitation, in particular.
Additional burden of proof
As we have pointed out to key legislators, the SDM legislation would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian.
The legislation specifically would require those petitioners to state why a more limited guardianship or an SDM agreement is “inappropriate.” We think that provision may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.
Among the other problems with the SDM legislation that we have identified are the following:
- The incapacitated individual is labeled “the decision maker.” There are no distinctions among levels of disability. Thus, there is no consideration in the legislation as to whether persons with low levels of cognitive functioning are capable of making and appreciating life-altering decisions.
- The legislation does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to DDS.
Unfortunately, none of our proposed improvements or safeguards have ever been adopted by the drafters of the legislation.
Lack of research on effectiveness of SDM at different levels of impairment
SDM has been adopted in a number of other states, and there have been some studies concluding it has had positive outcomes for participants. But there has apparently been little or no research as to how effective it has been for people with more severe levels of cognitive impairment. Like community-based care, SDM may work well for high-functioning people, but not necessarily as well for low-functioning people.
In a position paper on SDM, the VOR, a national organization with which we are affiliated, warned that, “In the process of attempting to change guardianship laws, it (SDM) could weaken protections for those who are the most vulnerable.”
The VOR statement added that:
The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making, the more their participation should be included. But, it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation.
VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship. “To eliminate guardianship or make it more difficult for family members and friends to become guardians will leave people with I/DD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent,” the organization’s position paper stated.
Also, as a study in the journal Psychiatry found,
As an empirical matter, it is not proven whether, and to what extent, SDM may be associated with better decisions… greater satisfaction with the decision making process, and an increased sense of empowerment among individuals with cognitive disabilities. Some authors have expressed concerns that SDM, like substitute decision making (guardianship), may expose individuals with disabilities to undue influence or coercion by their alleged supporters, thereby effectively disempowering them.
We think SDM may impose a greater risk of disempowering individuals with I/DD than would guardianships held by family members, in particular. In our experience, family members are more likely to act in the best interests of their loved ones than are professional caregivers, clinicians, and managerial personnel.
SDM statute not actually needed
Finally, we would note that legislation to implement SDM may not actually be necessary. As David English, a Professor of Law at the University of Missouri School of Law, has noted, “Despite the recent flurry of SDM statutes, there is a debate on whether such statutes are needed or useful and a lack of consensus on what features the statutes should contain.”
English pointed out that, “SDM arrangements can be implemented today in all 50 states, statute or no statute, by creating formal, written SDM agreements or well-understood informal arrangements. A good legal advisor can help create an agreement appropriate to an individual’s unique situation.”
That leads us to the conclusion that the real reason for the SDM legislation now before the Children and Families Committee may actually be to discourage and ultimately eliminate guardianship of people with I/DD, no matter how severe or profound their impairments are.
The prime means in the SDM legislation for accomplishing that objective of eliminating guardianship appears to be the provision that establishes the additional burden in court on persons petitioning to become guardians.
At the very least, we would urge that that onerous provision be removed from H. 261 and any of the other SDM bills that the Children and Families Committee may approve and send to the next stage in the ongoing legislative process.
Despite support from DDS, a disabled woman’s bid to live independently in the community is denied
Contrary to the assessment of officials with the Department of Developmental Services (DDS), a University of Massachusetts Medical School official has determined that a disabled woman should not be considered for an independent living arrangement.
In a decision dated July 29, the Medical School, which is under contract to the state’s MassHealth program, denied Ann Macdonald’s application for eligibility for a “Moving Forward Plan – Community Living (MFP-CL) waiver,” stating that Ann “cannot be safely served in the community.”
DDS officials have indicated, however, that they do believe Ann, who has cerebral palsy, is capable of living successfully in the community. Also, a psychiatrist concluded last year that Ann, 23, has normal intellectual functioning and “has demonstrated remarkable functional independence.”
Ann was placed in a DDS-funded group home when she turned 22, after having lived since she was 16 at the Pappas Rehabilitation Hospital. She wants to live independently, and said she intends to appeal the UMass/Mass Health determination.
Ann Macdonald
We have previously reported that Ann has been living for the past year in the Stoughton group home, which is run by Eliot Community Human Services, a corporate residential provider to DDS.
Ann came to the U.S. from China when she was 16. Cerebral palsy is a medical condition that keeps her confined to a wheelchair and limits her ability to fulfill basic functional needs such as showering and dressing without help.
Denial of eligibility based on cursory review
Ann said a UMass waiver unit nurse interviewed her for only about 15 minutes in the middle of June regarding her application for the MFP-CL waiver program. Present during the interview was Janette Packard, a Registered Nurse who is a friend and advocate for Ann, and a DDS official who has been advocating for Ann and supporting her application.
In the July 29 decision, the UMass Medical School stated that Ann “cannot be safely served in the community.” No further reasoning or specifications were provided in the one-page decision.
Ann and Janette said the UMass nurse expressed a concern to them about two factors that she said posed a problem for acceptance of Ann’s application. One concern was that an IQ test had allegedly shown in 2021 that Ann had an Intellectual Disability. The second was that because Ann needs help in getting out of bed, she couldn’t safely evacuate the premises in an emergency if she were living on her own.
Ann and her advocates dispute the legitimacy of both of those concerns.
Previous IQ test did not take into account language difference
In a draft letter of appeal, Ann maintained that the previous IQ test was administered just after she had arrived in the U.S. from China, and that she was just learning English at the time. Also, she said she had not received any formal education in China.
Ann said she is planning to take a new IQ test, which she believes will result in a markedly different result than the first.
As noted, a psychiatrist concluded last year that Ann has normal intellectual functioning. The Boston-based psychiatrist, Kaveh Ghaedi, maintained that psychological testing can be unreliable when administered to certain populations, particularly individuals with cerebral palsy. Such testing, he said, should take into account the impact of physical and speech limitations associated with that condition. However, he said, there was no evidence to suggest that this was done in Ann’s case.
In a recent email, a DDS official noted to Ann that, “We all agree that your IQ is much higher than that test reported and that is why I think a new test will help to show people who don’t know you personally that you are more than capable.”
Evacuation concern unfounded
Ann and her advocates also disagree with the waiver unit nurse’s statement that Ann’s need for help in evacuating a residence during an emergency is a reason to deny her waiver transfer. “I believe I have a right to accept risks,” Ann stated in her appeal letter. “Living in my own apartment matters deeply to me. I believe with the right technology and support, I can manage the risks.”
Ann stated that she hopes to find an apartment with sprinklers and other fire safety features, and that if needed, she can work with the fire department to create a safety plan. She also noted that DDS has found a mechanical lift that she can use by herself to get out of bed. She is currently being trained in using it.
It is unfortunate that a single person, who may be uninformed, has authority under current state regulations to make decisions that can disrupt the life of an individual under state care, and stymie their potential. A determination as important as the eligibility of a client for independent living should be made by a panel of clinical and medical experts, not a single nurse.
In this case, DDS has noted the importance of honoring Ann’s wishes and aspirations for an independent life. The UMass decision in this case runs counter to DDS’s own policy of encouraging independent living for those who desire it and can benefit from it. We hope Ann’s appeal succeeds.
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 government moves to preserve subminimum wages
In what we consider to be very good news for people with intellectual and developmental disabilities (I/DD) who are seeking work opportunities, the federal Department of Labor announced this month that it has ended an effort started by the Biden administration to phase out the payment of subminimum wages.
Subminimum wages have been permitted under federal law since 1938 to ensure that people with I/DD are not denied work opportunities.
While opponents of subminimum wages argue that they are discriminatory, we and a number of other advocates maintain that those wages have helped many people who would otherwise be unable to find work in the competitive, mainstream workforce.
The Trump administration’s decision to keep subminimum wages in place comes as the administration has also offered the public an opportunity to propose the elimination of federal regulations considered burdensome or unnecessary.
In response, we have joined other advocates in calling for the termination of the federal “Settings Rule.” The Settings rule sharply restricts congregate programs for persons with I/DD, including sheltered workshops.
Massachusetts had previously eliminated subminimum wage payments and sheltered workshops
We hope the latest federal action on subminimum wages will change the dynamic in Massachusetts, which had previously adopted a policy of eliminating those wages for clients of the Department of Developmental Services (DDS).
In April 2023, DDS announced it was no longer allowing the payment of subminimum wages to anyone entering a DDS-funded employment program. Previously, as of 2016, Massachusetts had eliminated all remaining sheltered workshops in the state. That policy resulted in an erosion of work opportunities for people with I/DD, according to data analyzed by COFAR.
The Healy administration has adopted an “Employment First” policy framework under which it has made it a priority to place DDS clients in jobs in “integrated settings,” with wages at or above the state’s minimum wage of $15 per hour.
Closing workshops did not lead to more integrated employment in the state
But those policies have not been successful in getting DDS clients into mainstream or integrated employment, according to the data we have reviewed.
In 2021, we reported DDS data showing that total integrated employment hit a peak of 7,180 DDS clients in October 2019, and then declined to 7,090 as of October 2020.
The data were contained in a DDS 2021 “progress report,” which also showed that the number of clients being placed in day programs after the closure of the state’s remaining sheltered workshops had far outpaced the number entering integrated employment.
The 2021 Progress Report acknowledged that the state was experiencing “difficulty obtaining job opportunities for individuals with significant disabilities who require customized work.”
There don’t appear to have been any further Progress reports since 2021. However, we were able to locate a DDS “Statewide Employment Snapshot” for 2024.
The Snapshot report contained data indicating that the elimination of the subminimum wage paid to clients of DDS providers increased the average wage received by DDS clients. However, according to the data, 547 fewer people overall were working in integrated employment in 2024 than in 2019. That was a drop of more than 11%.
The Snapshot acknowledged that the total number of people in integrated jobs still did not return to pre-COVID levels. The Snapshot, however, didn’t discuss whether the decrease may have been due to the minimum wage requirement.
Family advocate wants Massachusetts to revisit its elimination of the subminimum wage
As we have previously reported, Patty Garrity’s brother Mark, 54, used to participate in a sheltered workshop in Braintree run by Road to Responsibility (RTR), a provider to DDS. When the workshop closed, Mark’s program, like others throughout the state, was converted into a day program.
Patty said this week that she still takes Mark to the day program once a week for two hours. When it was a workshop, Mark worked 25 hours a week there and would perform simple tasks such as placing stickers on packaging or assembling simple products. He took pride in that work and found fulfillment in it, Patty said. Now he has nothing to do other than occasional paper shredding.
“Mark can contribute, learn, and work to his capacity, but he’s not learning now,” Patty said. “He hasn’t learned a new skill in 10-plus years.”
Mark, as Patty has pointed out, is not a viable candidate for integrated employment. He cannot produce at the rate necessary to earn the minimum wage. “He deserves to be protected by this (subminimum wage) law,” she said. “It’s time to revisit it (the elimination of the subminimum wage in Massachusetts). Eliminating the subminimum wage is not working.”
Patty added that the lack of viable activities in Mark’s day program has led to increased anti-social behaviors by many of the participants there. “They are bored there,” she said.
We hope the Healey administration ultimately takes a cue from the federal government and revisits its subminimum wage policy, as Patty suggested.
In our view, the data showing that integrated employment actually declined in Massachusetts since the closures of the workshops and the restrictions on the subminimum wage are evidence that those policies have failed.
Mother’s request to change her son’s visitation schedule denied
Valerie Loveland supports herself financially by driving an Uber.
Last month, she asked for a change in her son’s visitation schedule with her from his group home so she could start driving the Uber on weekends. That way, she said, she could earn more money and prevent possible homelessness and repossession of her car.
But Loveland’s son’s state-funded co-guardian objected and filed an emergency motion in probate court to prevent Loveland from making the schedule change. Loveland is currently allowed to take her son home for visits only on weekends.
Loveland’s son Matteson has an intellectual disability and lives in the group home, which is operated by the May Institute, a residential provider funded by he Department of Developmental Services (DDS).
The co-guardian, Attorney John Cartwright, who is paid by DDS, argued that it would not be in Matteson’s best interest to allow his mother to change his visits to the middle of the week. On June 12, Barnstable Probate Court Judge Susan Tierney upheld Cartwright’s emergency motion.
Loveland had emailed both Cartwright and managers at the May Institute on June 3, asking for the schedule change. She wrote that she is able to make more money driving on weekends, and therefore wanted to change her son’s visitation schedule to accommodate that situation.
Matteson and Valerie Loveland at Valerie’s recent graduation from Everglades University in Florida in Alternative Medicine. Valerie received her Bachelor’s Degree online and is on course for a Master’s in August. She is supporting herself and has financed her education by driving an Uber.
In her email, Loveland had stated, “I’m not sure I can continue to keep Matteson’s schedule as it is. I am still being illegally starved financially working during the week across multiple apps and having him all weekend when it’s busy. The good news is, I can probably take him Tuesday Wednesday and Thursdays, and drive him to and from dayhab. It’s not ideal, but it’s already cost me thousands of lost dollars in income.”
Loveland maintains that she needs the schedule change to prevent homelessness and car repossession. Currently, she is making only between $16 and $50 a day driving an Uber during the week. If she were able to work weekends, she would be able to earn more.
Loveland said no one responded to her June 3 email. However, one day later, on June 4, Cartwright filed the emergency motion with Judge Tierney.
Cartwright’s motion stated that, “It is believed that the motivation (for the schedule change) is based on it being the only way for her (Loveland) to work as an UBER/LYFT driver to earn income (and) retain her present housing.” The motion added that changing the schedule would “not be in the best interests of the ward.”
The case illustrates problems that can arise when family members and DDS disagree over care, particularly when a state-funded guardian or co-guardian is involved. (Other cases involving those problems are here, here, here, here, and here.)
On June 18, I emailed Cartwright and the May Institute managers that Loveland had previously written to, noting that we have a number of questions about this situation, one of which is what would happen to Matteson if Loveland were not able to retain her present housing due to an inability to earn sufficient income. “We don’t see how that would be in Matteson’s best interests,” I noted.
It seems possible that in that case, Loveland might become unable to provide any type of home visits for her son, and he might then become stuck full-time at the group home.
Cartwright has not responded to my email.
Loveland told us that while Judge Tierney granted Cartwright’s motion, the judge said she “expects everyone to work together for Matteson to work out any changes needed for his schedule.”
In an email to Cartwright and the May Institute managers on June 16, Loveland added that as Matteson’s co-guardian, she remained “ready and willing to participate in a collaborative process to address these concerns, advocate for solutions, and ensure that any decisions made reflect the best interests of my son.”
I noted to Cartwright in my June 18 email that we hoped both he and Loveland could work out a solution that would enable her to maximize her income without any adverse consequences for Matteson. We strongly believe that Loveland has always held the best interests of her son at heart, and would never do anything that would harm him or reduce his wellbeing.
Previous clashes over guardianship and visitation
Loveland and Cartwright have previously clashed, as we have reported, over an attempt by Cartwright in 2022 to limit Loveland’s co-guardianship of her son.
In addition, Loveland took issue with an email in November of last year from Cartwright that implied that several head-banging incidents involving her son were connected to his visits to her. In the November 14 email, Cartwright suggested that those visits might have to be restricted.
“We need to get together to set up a plan where he (Matteson) can get stabilized and return to his baseline,” Cartwright stated in the email. “That may involve having Matteson cut down his visits with you (Loveland) or even taking a break from spending time away from his residence and Dayhab.”
However, several emails about Matteson’s head-banging episodes last year indicate that those incidents occurred at his dayhab program and not while he was with his mother.
Loveland confirmed to us that “the overwhelming majority (of Matteson’s head-banging incidents) are occurring during the day program hours.” She said she has flagged the incidents and has suggested that the triggers might include sexual abuse that Matteson experienced in the group home in 2021, as well as such things as medication side effects, dehydration, and visual strain.
“What’s clear is that it (her son’s head banging) isn’t happening in my care, and it’s not happening during our visits,” Loveland said. She said the head banging and other behaviors that Matteson and others with autism often engage in are widely viewed by clinicians as a form of communication of such things as distress, pain, and unmet needs. She noted that the sexual abuse and other traumatic events that may have triggered Matteson’s behaviors never happened to him in her home.
Loveland added that the May Institute, as an Applied Behavior Analysis (ABA) provider, should understand the nature and timing of Matteson’s behaviors. Nevertheless, she said, her son’s visits home were restricted by the provider to weekends following the receipt of Cartwright’s November email.
Inappropriate restrictions on family visitation are also a frequent problem that we have noted when DDS becomes involved in guardianships or co-guardianships. (See examples here, here, and here.)
All too often, it seems, family members – particularly mothers – lose out in disputes with the state over care of their loved ones. The state always assumes it knows best how to provide that care even though it is the mother who has known her son or daughter for their entire life, and understands them far better.
We need a system of care for those with developmental disabilities that recognizes that reality.
Federal ‘Settings Rule’ that discriminates against congregate care needs to go
COFAR is joining a number of advocacy groups in urging the Trump administration to rescind a federal regulation that has sharply limited the size of residential settings and other programs for people with intellectual and developmental disabilities (I/DD) in order to make them “community-based.”
In our view, the regulation, which was implemented during the Obama administration, is a key reason the state is continuing to move away from congregate residential care facilities such as the Wrentham and Hogan Centers. It also appears to have led to the elimination of sheltered workshops and other work-based programs in Massachusetts.
The regulation, known as the “Settings Rule,” specifies that in order to meet requirements for federal Medicaid reimbursement, so-called “community-based settings” cannot be “institutional.” That means they can’t group together disabled people because that supposedly isolates them from their nondisabled peers.
Yet, as Together For Choice, a nationwide advocacy group that is leading the fight against the Settings Rule, points out, federal and state governments shouldn’t be able to determine what a “community” is. Rather, communities should be chosen by the individuals receiving the services or by their families or guardians.
Those communities could well exist within a congregate care center such as Wrentham or Hogan. Or they could exist within a sheltered workshop or a day program that provides work activities.
But partly due to the pressure of the federal government, the Massachusetts Department of Developmental Services (DDS) maintains that a community is only found in a group home or possibly even something smaller than that, such as a staffed apartment.
The Settings Rule potentially precludes even group homes from community-based reimbursement if they happen to be located “on the grounds of, or adjacent to, a public institution” such as a developmental center.
You can suggest the elimination of the Settings Rule
In May of this year, the Trump administration asked the public to identify regulations that should be rescinded. Together for Choice and a number of other advocacy organizations have identified the Settings Rule as one such regulation that needs to go. You can go to Regulations.gov to submit your own suggestion in that regard. We are doing so as well.
Suggestions will be accepted on the Regulations.gov site until July 10. Feel free to copy and paste portions of this post in the form that appears. Here is a guide to filling out the form.
We previously raised concerns about the Settings Rule, starting in 2014, when it was first proposed (see our posts here and here). More recently, we’ve asked Health and Human Services Secretary Robert F. Kennedy Jr. to reverse federal restrictions on congregate care. Eliminating the Settings Rule may be a key to that.
Mistaken definition of community
The Settings Rule appears to be one of the reasons the Healey administration today is allowing the Wrentham and Hogan Centers to die by attrition. In denying requests for placement at Wrentham and Hogan, DDS maintains that the care provided there is not community-based and therefore is not the “least restrictive” care available.
But this administration policy ignores the wishes of many individuals and their families, who argue that Wrentham and Hogan are communities in themselves, and are well integrated into their surrounding neighborhoods, cities, and towns. Those families also argue that so-called community-based group homes are often not truly integrated into surrounding communities, and are actually quite restrictive in their policies.
As Irene Tanzman, a COFAR member who has created a Facebook group in support of Wrentham and Hogan, pointed out, residents of Wrentham and Hogan “enjoy substantial access to the community. But no matter what they (the facilities) do, according to the Settings Rule, they are deemed as ‘institutional.’”
In March, Scott Mendel, chairman of Together for Choice, wrote to Drew Snyder, deputy administrator and director of the Center for Medicaid and CHIP Services, terming the Settings Rule “one of the biggest impediments to the development of a wide variety of (residential) settings.”
As Mendel noted in his letter:
At present, the implication of the (Settings Rule) is that there is a single “community,” and that community is the geographic area around the setting. This is an artificial and inaccurate construct…
Rather, (communities) are based on common interests, which is, in fact, the dictionary definition of “community.” Individuals with developmental disabilities should have that same right. They should have access to the “communities” of their choosing and such communities should not be geographically confined. Many individuals with disabilities living in a campus setting (like my daughter) or on a farmstead properly view the campus or farmstead as one of their communities. That individual choice should be respected.
Mendel added that:
There is no reason to discriminate against high quality campus settings, farmsteads and intentional communities. They provide a very legitimate model of care for some individuals with developmental disabilities. They should not be presumed to isolate or segregate the individuals they serve.
The result of the Settings Rule is that shortages of available residential placements have been made worse around the country. “Families across the country are clamoring for the easing of regulatory restrictions to enable the development of appropriate settings for their loved ones,” Mendel stated. “The Settings Rule stands in the way.”
In Massachusetts, neither Wrentham nor Hogan is generally offered by DDS as an option to any of the thousands of people who are waiting for residential placements.
In order to stem the tide of the deinstitutionalization movement, which has become an ideological juggernaut over the years, it is important to recognize that the movement has taken root not only at the state level but the federal level as well. To that extent, getting rid of the Settings Rule appears to be a good first step in restoring real choice to disabled individuals and their families in where and how they live.
State Commission vilifies institutions for people with developmental disabilities and demands an apology from the governor
A state commission established in 2023 to study the history of institutions for the developmentally disabled and mentally ill in Massachusetts has issued a final report which, as expected, almost completely vilifies those facilities.
The report by the Massachusetts Special Commission on State Institutions, which is dated May 25, paints an overwhelmingly negative and untrue picture of the history of the institutions, often couched in extreme terms. The report only briefly mentions the dramatic improvements in those centers for the developmentally disabled that occurred starting in the 1970s.
We repeatedly predicted that the Commission would examine only the history of the institutions prior to the 1980s when those facilities were notorious for abuse, neglect and poor conditions.
Our concern has been, and now remains, that opponents of the Wrentham and Hogan Intermediate Care Facilities (ICFs), the state’s two remaining congregate care centers for people with developmental disabilities, will use the report as justification for pushing for the closure of the facilities.
Notably, the report demands a formal apology from the governor, who, it claims, “must acknowledge the enormity of the legacy and harm of mass institutionalization that reverberates today.”
But what about the improvements that were made in institutional care starting in the 1970s in Massachusetts under the landmark Ricci v. Okin class action lawsuit? The late U.S. District Court Judge Joseph L. Tauro, who oversaw the consent decree in that case, said in 1993 that the care in the institutions was by then “second to none anywhere in the world.”
Isn’t that improvement also part of the legacy of institutionalization in Massachusetts? Should Governor Healey apologize for that?
What about the high federal standards that Wrentham and Hogan meet today? And what about the families that are fighting to keep Wrentham and Hogan open as the state pursues a policy of letting Wrentham and Hogan die by attrition?
Also, what about the legacy of deinstitutionalization, which the report does not criticize, but which has also caused much harm?
While the report has tried to make a positive contribution in calling for making public the historical records of the care of residents of institutions in Massachusetts, the report appears to assume that those records contain only damning accounts of that care. That is, of course, not true; but, the report implies that the purpose of providing public access to the records is to reveal “atrocities” committed in the institutions. As the report states:
By hiding a story of mass human rights abuses, the Commonwealth is preventing society from engaging in a full reckoning with the atrocities that have been inflicted on disabled people throughout our history.
Sensational claims concerning closed facilities
The report also makes a number of sensational claims that lack evidence of what it alleges are shocking activities that have taken place on the campuses of closed facilities. Among those allegations, for which the report doesn’t provide any details, are that some unidentified campuses have been used for pornographic photo shoots and “white supremacist celebrations.”
As the report puts it:
At their most offensive, (former institutional) sites have been used for pornographic photo shoots, white supremacist celebrations, community festivals, and amusement parks that would never be tolerated at similar sites of significant human rights abuses in Massachusetts or America.
I have not been able to find any references on line to pornographic photo shoots on the campuses of closed institutions. As noted, the Commission report provided no examples of it.
Brandeis University’s student newspaper, The Justice, reported that graffiti featuring markings of Neo-Nazi groups has been discovered on the walls of one of the buildings on the campus of the former Fernald Developmental Center. But the Waltham Police Department stated that “there are no known organized hate groups operating in the area.”
So, while vandalism at the former Fernald Center has been an ongoing issue, there is no information I could find that refers to white supremacist celebrations being held there. The Commission also provided no examples of amusement parks on the campuses of former institutions.
The amusement park reference might be to the development by the City of Waltham of a portion of the Fernald campus as a memorial park and “universally accessible” playground, with an electric train, a mini golf course, and a spray park “that would make it the largest disability-accessible park in New England.” The park received two awards from the Massachusetts Recreation and Parks Association in February for its design and commercial partnership.
In addition, the Commission report includes what appears to be a false claim that there is a threat of a “revival of large-scale institutionalizations” in Massachusetts. It provides no evidence for the claim.
While the report doesn’t appear to specifically recommend the closure Wrentham or Hogan, it claims institutionalization “stubbornly remains.” The statement appears to be an indirect call for the closure of facilities such as Wrentham and Hogan. If the report is referring only to institutions for the mentally ill as stubbornly remaining, it doesn’t specify that distinction.
The report’s full statement on this issue is:
Precisely because the public is largely unaware of the countless tragedies inflicted by these institutions—tragedies told in this hidden history—people with disabilities today face very-real threats by the non-disabled including the revival of large-scale institutionalizations where the practice has been abolished, and its expansion where it stubbornly remains.
Rights abuses were not ‘overlooked’
In its coverage of the Commission’s report, GBH News, a Boston-based National Public Radio affiliate and one of the more fervent critics of the former Fernald Center, quoted Alex Green, vice-chair of the Commission and one of the chief proponents of the Commission’s creation. According to GBH News, Green stated:
I think that there’s a massive ongoing act of erasure happening about one of the most significant and overlooked human rights tragedies in the history of this state and the country. It [the report] really gives us a devastatingly personal sense of how the state turned the idea of care into a much darker thing that harmed a lot of people.”
But the Ricci class action case and Judge Tauro’s involvement clearly show that those human rights abuses were not overlooked. They were addressed and corrected.
Moreover, even with regard to the early history of institutional care in Massachusetts, the Commission’s report appears to be uniformly negative when, in reality, not everything was necessarily bad about those early years.
As Ingrid Grenon noted in her book, “From One Century to the Next: A history of Wrentham State School and the Institutional Model in Massachusetts,” the 1920s was a period when the then Wrentham State School, under the direction of its first superintendent, George Wallace, had a caring staff and administration, and offered a multitude of services and activities for the residents.
Grenon’s book points out that Wrentham, like other similar institutions that sprang up in this state and around the country, entered a long decline, starting in the 1930s as it became more and more overcrowded and understaffed. The state schools in Massachusetts were finally brought back to excellence as a result of the Ricci v. Okin class action litigation.
But the Special Commission has this to say about those early years of institutional care in Massachusetts:
…Massachusetts developed, sustained, and exported many of the first legal, medical, educational, charitable, and social systems for placing people with intellectual, developmental, and mental health disabilities in institutions: practices widely understood for more than 75 years to be a violation of fundamental human rights. (my emphasis)
In sum, we would again emphasize that the report appears to have made some positive contributions with regard to the need for public access to records and for the identification of unmarked graves on the sites of the former institutions in Massachusetts.
But it is unfortunate that the report repeatedly leaps from those issues to unwarranted condemnations of the role and history of institutional care in the state. It’s clear from the report that the Commission did not closely examine the full history.
As we’ve previously noted, Green and other proponents of the Commission made statements prior to serving on the Commission that were almost uniformly negative about care at the former Fernald Center, in particular.
That negative agenda appears to have muddied the positive contribution that the report has tried to make with regard to the role of institutional care in Massachusetts.
State administrative judge dismisses mother’s appeal of termination of services in state-run apartment program
In a decision we think may set a bad precedent, a state administrative judge has dismissed a mother’s appeal of an abrupt cutoff of services last year by the Department of Developmental Services (DDS) in a staffed apartment for the mother’s intellectually disabled daughter.
In a three-page decision that took more than three months to issue, state Division of Administrative Law Appeals (DALA) Magistrate Kenneth Forton concluded on May 9 that Jeanne Cappuccio’s appeal of the then impending closure of the Andover apartment on April 1, 2024, was moot because she had taken her daughter Mia home with her shortly before the services in the apartment were terminated.
“Taking Mia home mooted any objection to her move that DALA could even possibly review,” Forton’s decision stated. “DALA is only able to order DDS to delay or stop a transfer, it cannot prevent a move that occurred a year ago.”
However, Jeanne contended that the matter was not moot because DDS had failed to allow her then timely appeal of the shutdown to proceed. Her appeal had been filed in March 2024 under DDS regulations that allow appeals to DALA of proposed transfers of clients from one residence to another.
Mia and Jeanne Cappuccio
Jeanne argued that in a violation of the regulations, DDS had declined to forward her original March 26, 2024, appeal of the impending termination to DALA for adjudication. As a result, we helped Jeanne refile her appeal directly to DALA on December 6. We also helped Jeanne in submitting a written objection to a motion filed by DDS on January 27 to dismiss her December appeal.
Jeanne maintained that due to the imminent termination of the services in the apartment as of March 2024, she had no choice but to bring her daughter home after DDS blocked her appeal from proceeding. She contended, however, that even today, DALA could order DDS to find a new, suitable location for Mia.
Since April 2024, Mia has been living at home with Jeanne and her husband Tom. But Jeanne said she and Tom are “overwhelmed with the challenges of providing Mia’s intensive supports and maintaining our commitments to our full time jobs.” She said DDS has not provided Mia with physical therapy nursing, or counseling services for the past year.
Following Forton’s May 9 dismissal of Jeanne’s December appeal, she asked Forton on May 20 for reconsideration of his decision, arguing that it contained significant factual errors. Forton denied her request for reconsideration without explanation the same day we filed it.
In both her March 2024 and December appeals, Jeanne alleged that the cutoff of services was done in retaliation for her complaint that Mia had been emotionally abused by staff in the apartment.
In Jeanne’s appeals and plea for reconsideration, she urged Forton to order DDS to provide an alternative residential location for Mia “that meets her best interest” as required by the DDS statute covering transfers. She added that, “A failure to do so simply rewards DDS for failing to comply with the statute and regulations that specified a timely process for appeal.”
Jeanne further argued that dismissing her appeal would allow DDS to evict disabled individuals from their homes by simply withdrawing all supports, without providing due process or alternative placements that provide services. This would set a precedent that would contradict the intent of the statutory framework governing the provision of services to persons with intellectual and developmental disabilities (I/DD).
Apartment program did not live up to promises
As we reported in February, DDS had initially proposed what was described as a novel residential program for both Mia and another woman who had both been subjected to poor care and conditions in a previous group home.
The Department proposed to rent an apartment in Andover for the women, and staff the new residence with direct care workers. Those workers would be employees of Northeast Residential Services (NRS), a division of DDS, which operates group homes in DDS’s northeast region of the state. It was to be an apartment where the two women could lead independent lives while still receiving Intensive Support Services from DDS.
But Jeanne maintains that far from providing better care than the previous group home had provided, DDS never appeared to be committed to making the new residential program work.
Jeanne said that in an incident on February 20, 2024, while she was talking with Mia over the phone, she overheard a staff member begin shouting at her daughter to get back in her room. Her daughter had been attempting to do her laundry, but the staff member would not let her do it. She said her daughter began crying.
Unable, after calling DDS and then visiting the apartment to get any answers, Jeanne filed a complaint with the Disabled Persons Protection Commission (DPPC).
On February 23, 2024, just three days later, NRS informed Jeanne that the residential program would be terminated in roughly a month. This was another violation of the regulations, which require a 45-day notice of proposed transfers.
Meanwhile, on the same day that NRS informed Jeanne of the termination of the program, DDS’s legal division petitioned in Middlesex Probate Court to limit or possibly eliminate Jeanne’s and Tom’s co-guardianship of Mia. That action had come out of the blue, Jeanne said. She said that DDS eventually withdraw its petition, but only after she had initiated discovery proceedings in the case.
Magistrate improperly quoted from regulatory provision by omitting a key phrase
Among the errors we cited in Forton’s decision were that he had left out five key words in citing the transfer regulations and thereby concluding that the regulations didn’t apply to Jeanne’s case.
In addition to wrongly concluding that Jeanne’s appeal was moot, Forton stated that one of the options suggested by DDS to Jeanne in March 2024 was to have Mia remain in the apartment and use a different service provider. He then stated that under the transfer regulations, “A change in the identity of the provider… involving no move, shall not be deemed a transfer.”
But while the regulations do state that a change in the identity of the provider shall not be deemed a transfer if there is no move, the provision in question specifically states that the change in the identity of the provider would have to occur “pursuant to a contract award.”
Thus, simply suggesting that a resident of a facility slated for closure can remain in the same location if the resident is able to find a new provider does not constitute compliance with the regulations. DDS, in that circumstance, must not only have identified the new provider, but must have signed a contract with that provider.
In Mia’s case, however, there was no contract awarded, and, in fact, a new provider had not even been identified.
The full regulatory provision that Forton partially quoted states the following:
…the change in the identity of the provider pursuant to a contract award involving no move, shall not be deemed a transfer…(Emphasis added)
In quoting the provision, Forton left out the critically important phrase “pursuant to a contract award.” Leaving out that phrase completely altered the meaning of the provision.
Thus, the magistrate’s finding that there was no transfer because DDS had offered Mia the option of staying in the apartment was incorrect. Jeanne ultimately took Mia home because DDS would not allow her timely appeal to DALA to proceed in March 2024, and because DDS had not identified a new provider, much less awarded a contract to one, before terminating services.
Jeanne argued that the question for DALA to decide in this case, and in all such appeals brought under the transfer regulations, is whether or not a proposed transfer is appropriate. She cited the precedent of the closure of the former Fernald Developmental Center in 2014. In that case, DDS gave notice that Fernald was going to be closed and the services there terminated.
The difference between the Fernald situation and Jeanne’s and Mia’s case is that DDS allowed the residents in the Fernald case to appeal to DALA under the transfer regulations prior to the cutoff of services.
Ultimately, this DALA decision was disappointing, not only because it went against Jeanne and Mia, but because it did not appear to seriously consider Jeanne’s arguments.
Moreover, in stating that the matter was now moot, the magistrate’s decision appears to have rewarded DDS for having violated the transfer regulations by preventing Jeanne’s timely appeal from proceeding.
Had DDS properly allowed the appeal to proceed in March 2024, it would have stopped the imminent termination of services in the apartment pending the outcome of that original appeal.
UPDATE: Second parent comes forward regarding poor care in a state-run, NRS group home
We have renewed our call for an investigation by the Department of Developmental Services (DDS) of its state-run group home system in the northeast region of the state after a second parent has contacted us with concerns about care in an NRS (Northeast Residential Services) home.
On Wednesday, the mother of a resident of a second NRS home voiced concerns similar to those of Jeannine MacKinnon, who was forced to bring her son Zachary home after three years of substandard care in an NRS home in Peabody. We first reported about Jeannine’s case on Tuesday.
NRS is a division of DDS that operates group homes in the northeast region of the state.
While state-run group homes in Massachusetts have better compensated and trained staff on average than do homes operated by corporate providers to DDS, we have found that problems can develop in any type of care facility.
In an email, the second parent, who asked that her name not be used, wrote that her son was admitted twice in recent months to hospital ICUs, first for internal stomach bleeding and later for severe asthma exacerbations. She said that in the second case, the staff had failed to seek medical attention, despite her repeated requests.
The parent also said her son has suffered multiple bruises and other injuries in the residence. The Disabled Persons Protection Commission has been contacted three times.
In addition, the parent said she has received no reply from the DDS Human Rights Office to her concerns about the situation. She said she wishes she could bring her son home, but is unable to care for him due to his aggressive behaviors.
This parent also stated in a subsequent message to me that DDS has not provided her with any other placement options, and that her son has been living in the facility for 18 months.
We originally contacted DDS Commissioner Sarah Peterson on behalf of Jeannine MacKinnon and her son on May 6, and asked that DDS conduct an investigation of the NRS system. Peterson responded that while she could not comment on individual cases, she had reviewed our email and “followed up with the team and will continue to do so.” She did not explicitly say that she would order an investigation.
In a follow-up email yesterday (May 29) to Peterson, I noted that the account from the second parent “deepens our concerns, and bolsters our call for DDS to carry out a comprehensive investigation into the NRS system.”
State-run group homes in Massachusetts have continued to lose residents under an administration policy that is letting them die by attrition.
As with the Wrentham and Hogan Intermediate Care Facilities (ICFs), DDS does not offer state-run residences as an option to persons seeking residential placements, but rather seeks placements for those individuals primarily in corporate provider-run group homes. As a result of this policy, many people with developmental disabilities end up waiting for months or years for such placements.
We hope it isn’t the case that the administration is also allowing conditions in its state-run group homes to deteriorate.
COFAR blog 