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.
DDS failed to act on concerns about care in a state-operated group home
We have seen substantial evidence over the years that the Department of Developmental Services’ (DDS) state-operated group homes have better trained and compensated staff on average than staff of corporate provider-run homes.
But problems can still plague state-run facilities if the Department removes resources from them, fails to ensure that staff are properly supervised, or fails to nurture a culture of caring.
If we see evidence of any of those things happening, we think it’s important that DDS investigate immediately in order to prevent the situation from spreading and possibly damaging a vital part of the system of care.
One apparent and hopefully rare example of those problems is alleged to have occurred in a Northeastern Regional Services (NRS) home in Peabody. Jeannine MacKinnon claims the staff there provided such poor care to her son Zachary that she finally had to take him home in January. Zac is 32, autistic and non-verbal.
NRS is a division of DDS that operates group homes in the northeast region of the state.
In this case, DDS doesn’t appear to have made serious efforts to respond to Jeannine’s many concerns over months or even years about serious lapses in care. Departmental officials repeatedly assured her they would look into her concerns, but problems persisted without indications that any solutions were tried or implemented.
Zac MacKinnon
Jeannine said that while Zac was in the group home, NRS officials criticized her as “a combative mother.”
Unfortunately, bringing Zac home hasn’t been a viable solution for Jeannine. Jeannine, who is disabled, said she can’t sustain his care in her home. Zac needs 24-7 care, elopes, and has seizures.
On May 6, we wrote to DDS Commissioner Sarah Peterson, urging her to act quickly to locate a suitable alternative residential location for Zac and to relieve Jeannine of the burden of continuing to try to care for her son on her own. We also requested that DDS investigate the NRS group home system in light of the problems Jeannine has identified in the Peabody residence.
Peterson responded to us a few days later, saying that while she “could not comment or provide specifics related to any individual cases, please know that I have reviewed your email, followed up with the team and will continue to do so.”
In fact, Jeannine said that earlier this month, DDS provided her with two possible alternative residences for Zac. She said she has had a “good conversation” with the corporate provider operating one of those homes.
Bruises and infections
At the NRS group home, Jeannine said, she often found her son “covered in bruises and covered with MRSA infections” and receiving no medical treatment. She sent us photos of those bruises and infections, many of which would be too graphic for us to publish.
Last month, DDS notified Jeannine it was investigating many of her claims, including allegations of a broken rib, bites and scratches, bruising, and skin infections on Zac. DDS also said it would investigate allegations that Zac was regularly assaulted by another resident of the group home and was locked out of his bedroom during the day by the staff so that he couldn’t escape from the other resident.
Another allegation of Jeannine’s was that Zac was forced by the staff to wear a confining bodysuit during that day that was zipped from behind. While the suit was intended to keep Zac from self-injurious behaviors, it was only supposed to be used at night.
While the investigation by the Department of Jeannine’s specific allegations is welcome, it is not clear that it will involve a systematic review of NRS’s management and oversight of its residences.
The alleged problems in the NRS home, which are documented in emails to DDS, are discussed below. We would note that DDS officials did not dispute any of the concerns that Jeannine raised with them.
Attacked and kept from bedroom
Jeannine said that among other problems, Zac had been subject for months to physical assaults by another resident in the NRS home, and that for some reason, the staff wouldn’t allow him to escape from those attacks by going to his bedroom during the day. She said he was forbidden for three years from entering his room until bedtime.
Despite repeated complaints from Jeannine to DDS about the situation, nothing appears to have ever been done about it.
In one email exchange about that problem, Jeannine wrote to an investigator with the Disabled Persons Protection Commission (DPPC) on August 11, 2024, saying, “I don’t want to repeat myself, but the group home called me tonight to say (Zac) was attacked again! The group home staff is short-staffed every weekend leaving my son more at risk.”
Two days later, on August 13, Jeannine contacted her son’s DDS service coordinator, the supervisor of the group home, and a clinical therapist, saying, “My son does not even have access to his bedroom to flee from sick situations.”
That same day, which was a Tuesday, Zac’s DDS service coordinator responded, suggesting scheduling a meeting with Jeannine either for the following week or the week after that. “I am very sorry you don’t feel like we’re helping you with Zac,” the service coordinator wrote, not specifically acknowledging that a problem existed.
A month later, on September 10, Jeannine emailed an occupational therapist at Mass General Hospital, who was involved in her son’s care. “What is going to be done so that Zac can access his bedroom?” she asked. “They know he (the other resident) attacks Zac. For whatever reason they need to be separated.” The occupational therapist responded that Jeannine should contact the DDS ombudsman about the issue.
Photos of bruises and infections
On October 10, 2022, Jeannine sent photos of bruises and skin infections on her son to Bonnie Hungler, DDS Metro North area director. Regarding the bruises on Zac’s arm, Jeannine said she had been told Zac had fallen off a couch the previous Saturday, but she didn’t believe the explanation.
Two days later, Hungler responded, saying, “I am very sorry to see the significant bruising.” She said the injuries had been reported to the DPPC and that she intended to speak with the NRS director, ”to discuss and see what his team has learned after speaking with staff on shift.“
Hungler also said she expected that DDS would probably investigate the incident. The DPPC did refer the investigation to DDS, which concluded in a 1½ page report that abuse was unsubstantiated. Only five people were interviewed in the investigation, in addition to Jeannine herself.
In August 2024, almost two years later, Jeannine was still sending photos of her son’s bruises and infections to DDS and other officials, and apparently receiving little if any response, and no solutions.
On August 6, 2024, Jeannine wrote to an administrator at Jewish Family and Children’s Service. “I am sharing pictures of what I can only call abuse and neglect on my son in the care of the state run group home he is in,” Jeannine wrote. In response, the JFCaS administrator wrote that the photos “are concerning,” and stated that the organization had reported the matter to the DPPC.
Forced to wear bodysuit
As noted, Jeannine maintains that the group home staff began forcing her son, early after he moved in, to wear a bodysuit that zipped up in the back to prevent potentially self-injurious behaviors. But while the suit had been approved for use at night, it was not supposed to be put on him during the day.
Yet, the group home staff was putting the suit on him at all times, Jeannine said, and her son began injuring himself attempting to get it off. In October 2022, after unsuccessfully appealing to NRS, Jeannine wrote to then DDS Commissioner Jane Ryder and sent her a photo of a wound on her son’s back. She said a buckle on the bodysuit had caused the laceration on Zac’s back.
In her message to Ryder, Jeannine discussed other injuries as well. “My son is non-verbal and has no way of protecting himself,” she wrote. “He has no way to take it (the suit) off so he wets or soils himself and sits in his own urine eating away at his skin while he waits for someone to take care of him.”
The following day, Ryder responded to Jeannine, saying that, “I feel horrible about everything you and Zac have been through. My staff will continue to ensure that we are doing everything to make sure Zac is safe.”
Ryder added that, “NRS has acknowledged the failure to notify you in a timely manner (about injuries) and this has been addressed with staff. Your service coordinator will be visiting the home and will be continuing to monitor.“ But Jeannine said no improvements in her son’s care resulted from her contact with Ryder.
Staff wouldn’t use communication device to prevent toileting accidents
In August of last year, Jeannine emailed Zac’s service coordinator and NRS officials, saying that the group home manager was not allowing Zac to use his IPad to communicate his need to use the toilet. “He (Zac) has no way to tell anyone (of his needs) without the constant use and consistency of his IPad,” Jeannine wrote. She added that she witnessed staff allow Zac to urinate in his pants during a medical appointment rather than providing him with his IPad, which was in his backpack.
Approximately 10 months before that, in October 2023, Jeannine had emailed a previous service coordinator, stating that while being driven by staff to a medical appointment which Jeannine attended, Zac had had a urinary accident. She took him into the bathroom at the medical center to change his clothing, but discovered that the staff had packed previously soiled clothing in his backpack. “This entire day has started off really bad, when it could have gone a lot smoother if things were done properly,” she wrote.
No day program and no residential alternatives
Throughout Zac’s three-year stay at the NRS group home, he was not provided with a day program. In November 2, 2023, James Bath, director of family medicine at the Mass. General Hospital Lurie Center, wrote a letter stating that Zac needed a day program in order to provide him with “regular activity, structure, and social interaction,” which he was not getting in the group home.
Dr. Bath noted that the lack of meaningful activities and social interaction in the group home was directly causing symptoms of mild depression in Zac.
Until now, Jeannine maintains, DDS had failed to provide her with a residential alternative for Zac even though she had asked many times that one be found for him.
Thorough investigation needed
It’s not often that we would concur with an assessment that a state-operated group home is not a suitable residential setting due to substandard care. We hope Commissioner Peterson takes this matter seriously and investigates this situation thoroughly.
DDS’s state-operated group home network is an integral piece of the total continuum of care for people with intellectual and developmental disabilities. The network has a reputation for providing excellent care from staff who are well trained and are motivated and conscientious.
If things are starting to slip in any portion of that network, DDS needs to act quickly to determine the cause of the problems and make the necessary corrections.
Volunteer advocates meet with state senators’ staffs in start of effort to preserve Wrentham and Hogan centers
The fight to preserve the Wrentham and Hogan care centers in Massachusetts began this past Friday with a visit to the State House of a dozen advocates and family members of persons with intellectual and developmental disabilities.
Our group, which included several COFAR members, held meetings with legislative aides to State Senators Paul Feeney and Rebecca Rausch. Rausch’s district includes the Wrentham Developmental Center.
Jim Durkin, legislative director for AFSCME Council 93, a state-employee union in Boston, spoke to us prior to the Friday meetings, noting that AFSCME is currently deeply involved in fighting to save the Pappas Rehabilitation Hospital.
“AFSCME is fully behind your efforts to preserve Wrentham and Hogan, which are vital to the fabric of care in this state,” Durkin said. “Right now, we are fighting the battle for the Pappas Hospital, but we will be working with you to make sure that the ICFs are protected as well.”
The Healey administration’s move to close Pappas and allow Wrentham and Hogan to die by attrition are all part of the same effort to eliminate state-run care under what we have long argued is a faulty assumption that it will save the state money.
The first meeting we had on Friday was with Shane Correale, legislative director for Senator Feeney. We have asked Feeney to draft legislation that would open the doors at Wrentham and Hogan to new admissions and establish housing on the campuses of the facilities for elderly family members of the residents.
Wrentham and Hogan advocates at the State House — (Left to right) Mitchell Sikora (COFAR Board member), Marsha Hunt, Shiri Ronen-Attia, Laurie Noland, Ilene Tanzman, Ana Paula Meehan, Allan Tanzman, Mary Dias, Elaine Strug, Jim Durkin (AFSCME Council 93), and Kim Meehan. (Photo by David Kassel)
During that meeting, COFAR member Irene Tanzman stressed the importance of Intermediate Care Facility (ICF) settings, such as Wrentham and Hogan, which meet federal standards that are stricter than the state standards for group homes. “Not everyone thrives in the community,” Tanzman said, adding that the state is “denying us the opportunity” for ICF-level care.
“We want choice,” Tanzman added. “The community is a legal fiction. People coming in get nothing. They get so-called self-directed services with inadequate or no budgets.”
Kim Meehan, a COFAR member, talked about her successful effort last year to gain admission to Hogan for her legally blind and quadriplegic sister Kristen. But Kristen’s admission came only after a lengthy battle that included blog posts by COFAR in support, and coverage by Fox 25 news.
“There was no place for Kristen to go,” Kim said, explaining the situation her sister was facing while being kept for two months at Faulkner Hospital. “DDS kept using the verbiage that the community would be the ‘least restrictive’ setting for her. It didn’t matter to DDS that her doctor said she needed an ICF.”
Mitch Sikora, a COFAR Board member, recounted the landmark Ricci v. Okin litigation in the 1970s and 1980s that led to major improvements in state-run facilities that serve people with intellectual disabilities. Many aging people with intellectual disabilities, he noted, are in particular need ICF-level care because facilities such as Wrentham and Hogan are equipped and staffed to serve people with complex medical needs.
Sikora also discussed the comprehensive care his brother Stephen has received at Wrentham.
Both Shiri Ronen-Attia and Marsha Hunt pointed out that their sons are nonverbal, don’t socialize, and have no interest in group activities — characteristics that make them different from most people with developmental disabilities who are suitable candidates for community-based settings. “Group homes can’t meet their needs,” Ronen-Attia said. “They have no voice.”
Hunt said that her son “sits day after day with nothing to do.” He is not provided in his group home with the occupational, physical, or speech therapy that might enable him to make progress in those areas, she said.
As I noted, many group homes have become the new warehouses in which intellectually disabled people are now largely placed.
We also discussed the proposed legislation that Senator Feeney has agreed to draft. As Irene noted, the legislation was proposed some five months ago.
Correale said Feeney’s staff was still working on our legislative proposals, and was “trying to bring them to the Senate as an institution.” He said Feeney’s office has begun discussing the legislation with the co-chairs of the Children, Families, and Persons with Disabilities Committee.
COFAR has specifically asked Feeney’s office to draft language to be added to the ICF line item in the state budget, stating that persons who qualify for community-based care from DDS have a right to ICF care.
In sum, Friday’s meetings convinced us that if state-run ICF care is to be preserved in Massachusetts, advocacy efforts must continue, and should be combined, if possible, with the ongoing effort to save the Pappas Hospital. We recognize that this will be an uphill battle.
But the good news is that we got what seemed to be a sympathetic hearing on Friday from the staff members of the two legislators. What is needed going forward is for the lawmakers themselves to attend the advocacy sessions, and to publicly support the preservation of state-run care.
Wrentham and Hogan Center proponents to visit the State House on Friday
A group of advocates of the Wrentham and Hogan Intermediate Care Facilities (ICFs) is planning to meet with staff members of several state lawmakers at the State House in Boston tomorrow (Friday) in order to protect the facilities from eventual closure.
Many of the advocates are COFAR members. We also expect participation by members of the AFSCME Council 93 state employee union and the Massachusetts Nurses Association (MNA).
For anyone interested in joining us, we will first gather at 10 a.m. outside the cafe on the fourth floor of the State House.
As we have reported many times, Wrentham and Hogan are critically important to the fabric of care for people throughout the state with intellectual and developmental disabilities. But like many administrations before it, the Healey administration appears to be allowing ICF-level care in Massachusetts to die by attrition.
The Friday State House event, which is being organized by COFAR member Irene Tanzman, will involve meetings with the staffs of several legislators whose districts include or are near to the two facilities. (Irene, by the way, has set up a Facebook group devoted to saving Wrentham and Hogan. You can find and join the group here.)
The legislators whose staffs we will meet with include State Senator Paul Feeney, whom we have asked to draft legislation that would open the doors at Wrentham and Hogan to new admissions and establish housing on the campuses of the facilities for elderly family members of the residents.
FY ’26 state budget would provide some increase in ICF funding
Meanwhile, the Legislature’s Senate Ways and Means Committee released its Fiscal Year 2026 state budget plan on Tuesday of this week, which would provide for moderate increases in funding for the ICFs and state-operated group homes in Massachusetts.
Unfortunately, the SWM budget doesn’t include the language we are suggesting, which we hope would would open the doors to Wrentham and Hogan. Our proposed language to ICF line item in the budget states that persons eligible for Home and Community Based Services (HCBS) have a right to care in an ICF in Massachusetts.
We plan to ask Senator Feeney’s staff tomorrow about the status of that proposed legislative language, and to convey the importance to all of the legislators of saving Wrentham and Hogan as part of the continuum of care in this state.
The SWM budget adopts the governor’s proposed FY ’26 funding levels for Wrentham and Hogan and state-operated group home line items.
For the ICF line item (5930-1000), the SWM budget proposes an increase from $124,809,632 to $132,086,287. That’s a 5.8% increase from the current fiscal year, which is above the rate of inflation.
For the state-operated group home line item (5920-2010), the SWM budget proposes an increase from $330,698,351 to $362,028,812, which is a 9.5% increase. We are not sure why those line items are getting those increases, but they are welcome.
The SWM Committee has also adopted the governor’s proposed increase to the corporate provider group home line item to over $2 billion — a 19% hike in funding. That is about the twice the percentage increase that the state-operated group home line item would get.
As Irene has noted, tomorrow’s State House event is just a start in what we hope will be a long-term advocacy effort in support of state-run care for some of our most vulnerable citizens.
As with the embattled Pappas Rehabilitation Hospital, which the Healey administration has also targeted for closure, we hope the preservation of the Wrentham and Hogan Centers will garner critical public support. Without that support, those two essential centers of care will eventually die.
Intelligent young woman with cerebral palsy trapped in DDS group home
When one speaks with Ann Macdonald, one gets an impression of her as articulate, no-nonsense, and yet cheerful and friendly.
Ann, 23, came to the U.S. from China when she was 16. She has cerebral palsy, 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.
A psychiatrist concluded last year that Ann has normal intellectual functioning and “has demonstrated remarkable functional independence.” But she has been trapped for the past year in a Department of Developmental Services (DDS)-funded group home run by Eliot Community Human Services in Stoughton.
Ann Mcdonald
Ann has remained there apparently based on a mistaken assertion and diagnosis that she has a brain injury and an intellectual disability.
Ann and two nurses who cared for her in her previous residential placement at the Pappas Rehabilitation Hospital, maintain that her DDS Individual Support Plan (ISP) contains a mistaken departmental activity code that characterizes her as having an Acquired Brain Injury (ABI).
That code has enabled Eliot to receive funding for Ann from DDS under an ABI Home and Community Based Services (HCBS) Medicaid waiver. But Ann says she doesn’t have a brain injury, and that claim is backed up by the nurses.
Also, Kaveh Ghaedi, a Boston-based psychiatrist, maintains that, “Ms. Macdonald’s presentation, history, and accomplishments do not align with the criteria for Intellectual Disability.”
Dr. Ghaedi last year provided testimony in probate court in Ann’s successful effort to terminate a guardianship of her that was held by an aunt. Her aunt willingly stepped down, agreeing that Ann didn’t need a guardian.
Nancy Silva, who is retired as a nursing assistant at the Pappas center, had this to say about Ann:
If I had a company, I would hire Ann to work there. She’s very smart and knows exactly what she is doing. When she first got here from China, she didn’t speak English, but learned it by watching TV. She’s like a sponge. She absorbs everything and goes with it.
Ann wants her own place to live where she can receive services from Personal Care Attendants (PCAs). That, she says, will enable her to live an independent life, which is something DDS contends it wants for everyone in its care.
Ann maintains that it’s not that DDS and the provider are opposing her wish to live on her own. It’s that they have done little or nothing over the past year to enable her to find a new place. They haven’t, as promised, identified any specific suitable residential settings for her.
In the meantime, Ann says, she feels her life is on hold in the current residence.
“It’s not a comfortable or safe place for me,” she said. “I’m not doing the things a 23-year-old girl should be doing. I don’t have independence. No freedoms.” She said that when she first told her previous DDS service coordinator last June that she wanted to leave, “she (the service coordinator) told me I was not capable of making my own choices or doing things myself. But that’s not true.”
“She (Ann) shouldn’t have been placed in that (Eliot) home,” said Janette Packard, a registered nurse, who cared for Ann at the Pappas center. “She doesn’t have cognitive deficits. She has no learning deficits.”
Dr. Ghaedi found that, among other things, Ann has shown that she can independently navigate the state’s healthcare system, can manage her own finances, and was able to arrange for her own disability-accessible transportation to community events.
Silva says the decision to place Ann in the Eliot home originated with the management at Pappas when Ann turned 22 and was transferred to the DDS system. She contends it was the wrong decision, and one she had urged the Pappas administrators not to make.
Both Packard and Silva have maintained friendships with Ann and are advocates for her. Silva contends that the Eliot group home staff did not react well to Ann from the start because she was much more active in speaking up for herself and her needs than were the other residents of the home.
“They (the staff) didn’t like it that she could speak up,” Silva said, “that she could articulate what she needed.”
The other clients in Ann’s group home are very nice, Silva says, but they are in their 50s and have nothing in common with her. “This group home is a horrible place to put a kid in.”
Not following the ISP
Ann and the two nurses contend that the staff are not following many of her ISP requirements such as one which states that Ann is capable of standing up from her wheelchair with help from the staff. Instead, Ann said, the staff insist on using a Hoyer lift at all times with her. A Hoyer lift is an electronic or hydraulic device that helps mechanically transfer patients from one surface to another.
In a recent email to her service coordinator, Ann expressed her frustration at that, writing, “I weigh 100 lbs. give or take and can help with standing, at least I could before I got here. This really bothers me that I may lose some of my function and ability because staff can’t or won’t follow the care plan.”
Ann’s ISP also discusses her desire to get a job, and states that DDS will submit a job referral for her. But Ann said that hasn’t happened. Ann has been applying on her own for jobs, but keeps getting turned down by prospective employers.
Silva maintains that DDS should be helping Ann in that job-finding effort, but isn’t. Ann particularly needs a DDS Community Based Day and Work (CBDW) program, which could provide training and other employment-related services, but DDS has not provided such a program for her. In her ISP, Ann mentions her desire for a CBDW program.
There are other problems with the group home.
Ann notes in her ISP that one of her strengths is cooking Chinese food. But she and Nancy say that the staff rarely let her cook the meals she prefers. She has an air fryer, for instance, but says the staff rarely allow her to use it.
Meanwhile, Ann says, some of her belongings from her four years at Pappas remain packed in boxes in the Eliot residence. A year after her move to the group home, the staff haven’t unpacked all of the boxes.
In an April 10 email to her new service coordinator, Ann said that while Silva helped her unpack most of her belongings, that “should not be left for my visitors or my therapists as they are not hired by Eliot to do (that).”
Wrong disability code
Ann’s current ISP lists her services in her group home as “3751-Residential Habilitation.”
A DDS document describes this number as an “activity code” for “Acquired Brain Injury Residential Services.” It isn’t clear who first selected this code and placed it in her ISP, but Ann maintains there is no evidence in her medical records that she has a brain injury. As a result, she hasn’t signed the ISP.
Packard contends that Ann’s ISP should list the activity code as 3153 for “Adult Long-term Residential Services.” Unless the code is changed, Ann and Packard say, DDS may continue in the future to place her in inappropriate settings and provide the wrong services for her.
Faulty psychological testing
In his assessment of Ann, Dr. Ghaedi noted that in 2021, Ann was tested and determined to have a moderate intellectual disability. However, Ghaedi stated that based on his own assessment of her, “this (psychological testing designation) doesn’t align with her observed abilities.”
Ghaedi noted that individuals with moderate intellectual disability “typically exhibit significant deficits in abstract reasoning, learning, and problem-solving, often requiring caregiver support for basic tasks. In contrast,” he wrote, “Ms. MacDonald has demonstrated remarkable functional independence.”
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.
Ann added that the psychological testing was done just a couple of years after she arrived in the U.S. and before she became as proficient as she is now with the English language.
In sum, there appears to be no question that Ann has been done a disservice by DDS in placing her in an inappropriate residential setting based on a mistaken departmental activity code and based on potentially flawed psychological testing.
DDS should act immediately to rectify the situation, and find an appropriate residential placement for Ann in which she can reach her potential for a happy, independent, and productive life.
Legal aid agencies get millions in state funding, yet say they lack resources to represent DDS families
Tens of millions of dollars in taxpayer funds are distributed each year to nonprofit legal aid organizations in Massachusetts.
Yet, family members and guardians involved in disputes with the Department of Developmental Services (DDS) over issues such as the removal of their guardianships have frequently expressed frustration to us that they could not get help from those legal aid agencies.
In two recent instances, legal aid agencies told us they didn’t have the resources to represent a woman with an intellectual disability who was involuntarily placed under the guardianship of an organization funded by DDS. The woman wants a long-time friend and former care giver to be her guardian.
Yet, both agencies provide representation to persons with disabilities, according to their mission statements or online descriptions of them.
In a third case, a legal aid organization executive initially expressed interest in representing the woman, but later backed away for unclear reasons.
Despite that, all three of those agencies receive millions of dollars a year, indirectly passed through to them from taxpayers, and all appeared to be in strong financial condition, according to their IRS tax filings. Their executives receive comfortable salaries and got raises in the past year.
In a fourth case, as we reported, a legal aid organization – the Massachusetts Access to Justice Commission — was unable even to respond, due to a lack of “authority and expertise,” to our questions about the rules for advocating in court for DDS families, according to its director.
That organization actually has no budget, according to an official with the Supreme Judicial Court, which oversees it. Yet the organization advertises its mission as “providing and improving access to justice for those unable to afford counsel.”
Following the money to legal aid agencies
We examined IRS tax filings known as Form 990s for the three nonprofit legal aid organizations that declined to help the woman in the guardianship dispute. Those tax forms are publicly available on ProPublica’s Nonprofit Explorer web site.
The tax forms we reviewed were for the Disability Law Center (DLC), South Coastal Counties Legal Services (SCCLS), and the Center for Public Representation (CPR).
We also examined the tax filings of the Massachusetts Legal Assistance Corporation (MLAC), which appears to be a pass-through organization of taxpayer funding to other nonprofits that advertise themselves as providing free legal assistance to people who are unable to afford expensive legal representation. We found, in fact, that the MLAC provides millions of dollars annually to the DLC, SCCLS, and the CPR.
The MLAC bills itself on its website as “the largest funding source for civil legal aid organizations in Massachusetts.” In fact, as we found, it is actually the state that is the largest source of that funding.
Pass-through agency
In Fiscal 2024, the MLAC passed through more than $70 million in funding to legal aid organizations in the state, a 23% increase from the year before. Those organizations, as noted, included the DLC, SCCLS, and the CPR, which received a total of $11.8 million from the MLAC that year.
In addition, the MLAC pays the salary of the director of the Massachusetts Access to Justice Commission, the organization mentioned above that has no separate budget.
So where does the MLAC’s funding actually come from?
According to its Fiscal Year 2024 Form 990, the MLAC received $81 million in total revenues that year, a 25% increase over the $65 million in revenues it received in Fiscal Year 2023.
Of that $81 million, the MLAC was appropriated $49 million under the Fiscal 2024 state budget “to provide legal representation for indigent or otherwise disadvantaged residents of the commonwealth.” So state taxpayers appear to have provided more than 60% of the MLAC’s funding that year.
The MLAC also receives revenue generated by the IOLTA program, which requires lawyers and law firms to establish interest-bearing accounts for client deposits.
As noted, we found that millions of dollars in state funding was passed through by the MLAC to the legal aid organizations we had contacted.
The Disability Law Center (DLC)
In Fiscal 2024, the DLC received $1.3 million from the MLAC, an amount roughly 30% of the DLC’s total revenues that year. The DLC’s mission, as stated in its 2024 tax filing, is:
To provide legal advocacy on disability issues that promote the fundamental rights of all people with disabilities to participate fully and equally in the social and economic life of Massachusetts.
In November, however, the DLC stated that it doesn’t handle guardianship cases due to its “very limited resources.” We had asked for the organization’s help in representing the woman who was fighting an unwanted guardianship.
The DLC’s Form 990 for the year ending September 30, 2024, showed the organization had net assets totaling $2.4 million, meaning their assets exceeded their liabilities by that amount. Moreover, their net assets increased by $154,000 that year, meaning they enjoyed a surplus of revenues over expenses of that amount.
Those are signs of strong financial health for the DLC, although that information alone doesn’t indicate whether the organization is capable of representing more clients. But the DLC was able to give its top four executives 5.8% raises in Fiscal 2024, bringing their average compensation to roughly $230,000.
The Center for Public Representation
The CPR received $3.3 million in revenues in Fiscal 2024, which was up 200% from its revenues in the prior year, according to its Fiscal 2024 Form 990.
The organization stated on its tax form that its mission was to provide “legal assistance, counsel, and representation to institutionalized, low-income individuals with mental illness or other disabilities at no charge.” But, as noted, the CPR did not ultimately agree to represent the woman who was seeking to end an involuntary guardianship.
Of the CPR’s $3.3 million in revenues in Fiscal 2024, some $734,000 came from the MLAC that year.
That year, the CPR’s net assets were a positive $14.3 million, a figure that was up $600,000 from the prior year. The organization’s top four executives received an average of $235,000 in compensation In Fiscal 2024, up an average of 16% from the prior fiscal year.
South Coastal Counties Legal Services
Out of its $13.8 million in total revenues in in Fiscal 2023, the SCCLS received $9.8 million from the MLAC, according to the tax forms of both organizations. Thus, over 70% of the SCCLS’s total revenues came from the MLAC that year.
The SCCLS’s tax form for the year ending December 31, 2023, shows that the organization’s net assets that year were $15.4 million, up 31% from the year before. That amounted to an increase of $3.7 million, which equates to a surplus in revenues to expenses that year of that same amount.
The SCCLS stated in its tax form that its mission was “to achieve equal justice for the poor and disadvantaged through community-based legal advocacy.”
Yet, when we asked the SCCLS about providing legal representation for the woman fighting her unwanted guardianship, an intake paralegal informed us that, “Unfortunately, at this time we are unable to provide assistance with guardianship matters due to capacity issues.”
The top four executives with SCCLS received 10% increases in compensation over the previous year, bringing their average compensation to $161,000. This number may actually be low because the SCCLS tax form for the year ending December 31, 2023, states that the executive director worked only two months that year and yet received $167,600 in compensation.
There seems to be a pattern here. Each of these organizations has a noble-sounding mission that would appear to promise legal help to desperate family members and guardians of people in the DDS system. Yet, none of the organizations would deliver on that promise to the woman we inquired about.
The lack-of-resources excuse seems to ring a bit hollow given those organizations each receive millions of dollars in state funding and appear to have enough money to pay handsome salaries to their executives and to maintain strong financial viability.
Money doesn’t seem to be an issue with legal aid organizations in Massachusetts. We would hope they would dedicate themselves to their stated missions rather than just saying the right things.
COFAR blog 