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Yet another legal assistance organization that apparently doesn’t deliver for families in the DDS and probate court systems
Last month, I wrote to the co-chairs of what appeared to be a highly prestigious organization that might help us find legal representation for people caught up in disputes over guardianship with the Department of Developmental Services (DDS).
The Massachusetts Access to Justice Commission bills itself on its homepage as “Working to ensure that everyone in Massachusetts has access to the justice they deserve.” The homepage adds that the Commission is concerned with “providing and improving access to justice for those unable to afford counsel.”
But how serious is this Commission really? On the surface, it would seem to be very serious. It consists of 28 commissioners who represent the top echelons of the Massachusetts legal system.
The commissioners include judges from the Superior, Probate, District and other courts in Massachusetts, attorneys with prominent law firms and legal assistance organizations, professors from major law schools in the state, two attorneys with the state Attorney General’s Office, and many others.
The chief counsel for judicial policy with the Massachusetts Supreme Judicial Court serves as the high court’s liaison to the Commission.
And yet, when I asked the Commission simply for information about how to ensure access to justice for people in the DDS and probate court systems, I was told that the Commission didn’t have the “authority or expertise” to help me.
A disagreement over what constitutes legal advice
I first emailed the co-chairs of the Commission on December 31, asking for answers the Commission might have to two questions:
1. What are the rules, case law etc. that govern representation of individuals in probate court and other settings by non-attorney advocates?
2. How can we find pro bono attorneys for family members involved in the DDS and probate court systems?
In a number of these cases, I noted, we have been asked by parents or other family members to help them fight efforts by DDS or other parties to remove their guardianships of their loved ones with intellectual and developmental disabilities (I/DD), or to help them seek to restore their guardianships.
It seemed the Access to Justice Commission might have answers to those questions because the Commission’s mission statement on its website states that the Commission is committed to:
- “Providing legal services for those unable to afford counsel“;
- “Enlarging the number of attorneys trained, willing, and able to provide pro bono civil legal services”; and
- “Enlarging the number of non-lawyers trained, willing and able to provide appropriate assistance to improving access to justice.”
On January 14, two weeks after I submitted my query, Deborah Silva, the director of the Commission, responded to me that the Commission’s co-chairs had forwarded my query to her. She said, however, that the Commission didn’t have “the requisite authority or expertise to answer” my first question.
Silva subsequently wrote that, “I honestly don’t know the answer (to that question), but because the Commission is not authorized to give out legal advice, I’m not sure I’d be able to be of much help even if I did.”
As to my second question about pro bono attorneys, Silva suggested that I contact another organization — the National Academy of Elder Law Attorneys (NAELA). She later added MassProBono.org to that. More about that a bit later.
With regard to my first question about rules constraining non-attorney advocates, I responded to Silva that I actually hadn’t asked the Commission for legal advice. I had asked for information about rules that govern representation of individuals by non-attorney advocates.
My question was general in nature. I was not asking for anyone’s legal opinions about any specific legal case or cases. That latter activity — providing advice about specific legal cases — is what I would consider to be legal advice, and is what I would assume the Commission is prohibited from doing.
No help with pro bono attorneys
With regard to my second question about finding pro bono attorneys, Silva, as noted, referred me to two other organizations — NAELA and MassProBono.
My real problem with that response is that it begged the question, why would such a seemingly high-powered and prestigious organization as the Access to Justice Commission need to pass the buck and shuffle me elsewhere? The Commission not only has those dozens of highly credentialed commissioners, it has a standing committee on pro bono legal services. It certainly has its own expertise in this area.
We had, in fact, already contacted a number of legal assistance organizations, and had gotten nowhere with them, before contacting the Access to Justice Commission.
Last fall, the Boston-based Disability Law Center stated that they don’t handle guardianship cases, while the National Center on Law and Elder Rights never responded to our query.
Brockton-based South Coastal Counties Legal Services said they couldn’t take on a particular case we were proposing because they were “up to capacity.” That case involves a woman who claims she has involuntarily been placed under guardianship by an organization funded by DDS. She needs an attorney.
In November, the executive director of the Easthampton-based Center for Public Representation (CPR) expressed interest in that guardianship case. But somehow that interest later evaporated.
Unfortunately, the Access to Justice Commission appears to be more of the same. It is yet another organization that claims to be committed to providing legal representation for people who otherwise couldn’t afford it. And yet, none of these organizations seems to be able to go beyond the words and demonstrate that commitment.
We remain committed to providing advocacy for people in the DDS and probate court systems. But those systems are largely broken. It’s time the people who run the institutions wake up to this reality and stop being satisfied with printing platitudes on their websites.
Our priorities for the 2025-2026 legislative session
The 2025-2026 session of the Massachusetts Legislature began on January 1 of this year. So we are taking this opportunity to announce our priorities for this 194th legislative session.
Admissions should be opened to the ICFs and state-operated group homes
We are seeking the filing and passage of legislation that would require the Department of Developmental Services (DDS) to offer the Wrentham Developmental Center, the Hogan Regional Center and state-operated group homes as options for persons with intellectual and developmental disabilities (I/DD) who are seeking residential placements in Massachusetts.
Unless the administration agrees to open those facilities to new admissions, they will eventually close. DDS data show the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2024.
The census at Wrentham dropped from 323 in Fiscal 2015 to 159 in Fiscal 2024 – a 50% drop. The census at Hogan dropped from 159 in Fiscal 2011 to 88 in Fiscal 2024 – a 45% drop.
Source: DDS
From Fiscal 2008 to 2021, the census in the state-run group home system dropped from 1,059 to 1,023 – a 3.4% decrease.
Meanwhile, the census in the state’s much larger network of privatized group homes continued to climb during that same period, rising from 6,677 to 8,290 — a 24% increase.
Currently, the privatized group home system in Massachusetts is providing substandard care even as thousands of individuals continue to wait for residential placements.
Even the Arc of Massachusetts, which has pushed for the closures of all remaining ICFs, has acknowledged a “systemic failure” in the largely privatized DDS system in which thousands of persons with I/DD are unable to get services.
State-run residential facilities, which have better trained and higher paid staff, are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.
Yet, DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. During the past two years, we have reported on two admissions to ICFs in Massachusetts (here and here), but those admissions have been the exceptions. In at least two instances in the past two years, families have been unsuccessful in efforts to win placements for their loved ones at the Wrentham Center.
That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICFs, in particular, will eventually be closed.
Right to ICF care
Despite DDS’s policy, the federal Medicaid law and its regulations confer a right to ICF care to individuals and their families and guardians.
As Medicaid.gov, the federal government’s official Medicaid website, explains, “States may not limit access to ICF/IID service, or make it subject to waiting lists, as they may for Home and Community Based Services (HCBS)” (our emphasis).
Open ICF campuses to family housing
In addition to our proposal for legislation to open the ICFs to new admissions, we are calling for legislation that would establish housing on the Wrentham and Hogan campuses for elderly family members of the residents of the facilities.
Such housing would allow families to live in proximity to their loved ones in DDS care and to establish caring communities. It would provide peace of mind to ageing parents and siblings who may find it increasingly difficult to make long trips to visit their loved ones in the facilities.
Adequate funding needed for state-run facilities in the Fiscal Year 2026 budget
In order to preserve ICFs and state-operated group homes, state funding for these settings must be adequate. We are calling for the following increases in the state budget for the coming fiscal year:
- DDS ICF line item (5930-1000). Based on the federal Bureau of Labor Statistics inflation rate of 3.1% in the Boston Metropolitan Area as of November 2024, we are requesting a $3.9 million increase in this line item, from $124,809,632 in the current fiscal year, to $128,678,731 in Fiscal Year 2026.
The ICF line item decreased by 40% between Fiscal 2012 and 2025 when adjusted for inflation.*
- DDS state-operated group home line item (5920-2010). We are requesting a $10.3 million increase in this line item, from $330,698,351 to $340,950,000 in Fiscal 2026.
The state-operated group home line item increased by 47.6% between Fiscal 2012 and 2025 when adjusted for inflation. However, that compares with an increase during that period of 65% in the corporate-provider residential line item (5920-2000). The corporate community-residential line item was $1.7 billion in Fiscal 2025.
ICF budget language should be changed
We are seeking two modifications to the language that is included every year in the ICF line item in the state budget (5930-1000). In one instance, the language mistakenly implies that the U.S. Supreme Court ordered the closures of institutions for persons with developmental disabilities.
In the second instance, the annual budget language lists three conditions for discharging clients from ICFs to the community, but leaves out one of the key conditions in Olmstead, which is that the client or their guardian does not oppose the discharge. We will request that that condition be added to the language in the line item.
Regarding the first instance, the budget language refers to Olmstead v. L.C., the Supreme Court’s landmark 1999 decision, which considered a petition by two residents of an institution in Georgia to be moved to community-based care.
The budget language states that DDS must report yearly to the House and Senate Ways and Means Committees on “all efforts to comply with …Olmstead…and… the steps taken to consolidate or close an ICF…” (our emphasis)
However, as noted above, closing institutions was not the intent of the Olmstead decision. The decision explicitly states that federal law — specifically the Americans with Disabilities Act (ADA) — does not require deinstitutionalization for those who don’t desire it.
We believe the annual state budget language should be changed to state: “…the steps taken to consolidate or close an ICF and the steps taken to inform families of the choices available for residential care including ICF care.”
We are concerned that the current line item language could allow the administration to justify continuing to underfund the line item, and possibly to seek the eventual closures of the Wrentham and Hogan Centers.
Regarding the second instance in which we are seeking a language change, the three conditions listed in the annual state budget for discharging clients to the community are:
- The client is deemed clinically suited for a more integrated setting;
- Community residential service capacity and resources available are sufficient to provide each client with an equal or improved level of service; and
- The cost to the commonwealth of serving the client in the community is less than or equal to the cost of serving the client in an ICF/IID…”
The first two of those conditions do match conditions listed in the Olmstead decision for allowing the discharge of clients to the community. However, there is a further condition in Olmstead, which is that such a discharge is “not opposed” by the client or their guardian. That condition is not included in the budget language, and we will request that it be included.
Choice needed in residential services
DDS holds considerable authority regarding residential placements. Families cannot change residential providers without DDS approval. We would support legislation creating a voucher system, which would allow family choice, create competition, and improve the quality of care. This would also help families who need to move to other parts of the state for work or family reasons.
Guardianship reform needed
Reform is needed of the guardianship system in probate court, which traps many families into losing disputes with DDS.
We would support a guardianship reform bill that would provide for free legal representation for family members and that would presume that parents or siblings would be suitable guardians in petitioning for guardianships.
We have long supported proposed legislation that would presume that parents, in particular, would be suitable guardians of their adult children with I/DD. This legislation was first proposed by the late Stan McDonald, who had sought unsuccessfully to regain guardianship of his intellectually disabled son.
Stan’s bill, which was most recently filed in the previous legislative session, has never gotten out of the Judiciary Committee, however.
Independent DDS appeals process
The appeals process that persons must follow regarding Individual Support Plans (ISPs) contains a serious conflict of interest in that DDS controls the entire process.
When a family member or guardian of a DDS client appeals the client’s ISP, the DDS commissioner appoints a hearing officer of its choice to decide the case. After the hearing officer decides the appeal, the commissioner can reverse the decision. We have reported on at least two instances in the past year and a half in which this appeals process has been marred by apparent bias on the part of the DDS-selected hearing officer against the appellants.
We would support a bill, which would place the entire ISP appeals process under the control of the independent state Division of Administrative Law Appeals (DALA).
DPPC Abuser Registry reform
Last year, we reported that in only a minority of the cases in which the Disabled Persons Protection Commission (DPPC) affirmed initial substantiations of abuse allegations against care providers did the agency conclude that those persons’ names should be placed in the DPPC’s Abuser Registry.
An individual whose name is listed in the Registry can no longer work in any DDS-funded care setting.
Following our report, state Senator Patrick O’Connor, the original sponsor of the legislation that created the Registry, said he was worried by our findings and that it “may be time to fine-tune” the law.
We are calling for changes in the law that include requiring the DPPC to consider several factors listed in the regulations for determining whether a care provider against whom abuse has been substantiated is really fit to continue to provide services. Right now, the regulations say only that the DPPC “may” consider factors such as previous incidents of abuse and the provider’s previous work history.
Also, we believe the regulations should explicitly require that the DPPC place care providers in the Registry in all cases in which the agency has affirmed allegations of intentional physical or sexual abuse.
Funding to corporate providers must result in higher wages for direct-care workers
Increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.
We are calling for legislation that would raise the pay of direct-care workers employed by DDS corporate providers to $25 per hour.
Work opportunities needed in congregate care settings
In the wake of the closures of all sheltered workshop programs in Massachusetts as of 2016, we are calling for legislation authorizing the introduction of work opportunities for individuals in community-based day programs.
The last time such legislation was proposed appears to have been in 2019 in the form of then H.88. That legislation, however, did not make it out of committee.
Safeguards and corrections needed in Supported Decision Making legislation
During the last legislative session, identical Supported Decision Making (SDM) bills came close to final enactment, but the bills died in the House Rules and House Ways and Means Committees respectively at the end of the session. We had raised numerous concerns about the bills with those and a number of other legislative committees.
We expect the same SDM legislation will be refiled in the current session. We intend to raise similar objections to the bills unless they are redrafted to correct serious flaws.
SDM reflects a growing movement to restrict guardianships of persons with I/DD and replace those guardians with “networks” of more informal advisors. While SDM can hold promise for some high-functioning individuals, and we would support its adoption only with adequate safeguards, particularly safeguards against the potential marginalization of family members.
*From the Massachusetts Budget & Policy Center’s online Budge Browser at https://massbudget.org/budget-browser/.
An overlooked but vitally important book on the history of institutional care in Massachusetts
Among the books that anyone interested in the continuum of care for persons with intellectual and developmental disabilities (I/DD) should not miss is Ingrid Grenon’s meticulously researched “From One Century to the Next: A history of Wrentham State School and the Institutional Model in Massachusetts.”
I hope the controversial Special Commission on State Institutions, which is due to release a report on the history of institutional care in Massachusetts next June, has a copy of this book. While the book can be purchased online, it is also available in libraries.
I have to confess to having missed this book, which was published in 2015, until Grenon contacted me a few weeks ago. Having now read it, I realize it makes a powerful case that institutions, in themselves, are neither good nor bad. It is how they are run that counts, just as is the case in any care setting.
As this book documents, the high point of the care and services at Wrentham — prior to the advent of the modern Intermediate Care Facility (ICF) model in the 1980s — was during the 1920s.
The 1920s, exactly a century ago, was a period when the then Wrentham State School, under the direction of its first superintendent, George Wallace, had a caring staff and administration, and offered a multitude of services and activities for the residents. Wallace displayed a genuine interest in helping them lead meaningful and productive lives.
But, as the book shows, Wrentham, like other similar institutions that sprang up in this state and around the country, entered a long decline, starting in the 1930s as it became more and more overcrowded and understaffed. By 1960, Wrentham, which was intended to house no more than 1,500 residents, had a residential population of 2,400. Today, less than 160 residents remain there.
Wrentham and other state schools in Massachusetts were finally brought back to excellence as a result of the Ricci v. Okin class action litigation in the 1970s and the intervention of the late U.S. District Court Judge Joseph L. Tauro.
A refutation of the ideology behind deinstitutionalization
Based on that historical arc, I think the book offers a compelling refutation of the longstanding and dominant ideology used to support deinstitutionalization. That ideology is based on the premise that all institutional care is bad and outdated, and that that characteristic never changes and can never change.
The book, however, shows, on a year-by-year basis, how one institution – Wrentham — progressed from very good to very bad, and back again. Wrentham did change, and it changed dramatically. It is clear that if an institution is well run and has sufficient resources, it can be a positive and even necessary option for residential care.
Grenon’s book also shows how the ongoing debate over institutional versus community-based care was central to the thinking even of Walter Fernald and Wallace way back in the late 19th and early 20th centuries.
What was later to become the Fernald Developmental Center was established in 1848 as the first institution in the United States for persons with intellectual and developmental disabilities. It was later named for Walter Fernald, who became its first superintendent. The then Wrentham State School was officially opened in 1910.
Grenon’s book demonstrates that it’s not a simple proposition that the Fernald and Wrentham schools were meant to be segregated facilities, intended to keep people with intellectual disabilities out of the view of the general public. Even for Walter Fernald and George Wallace, there were two ways of looking at their facilities.
The centers could be seen from the perspective of the now discredited science of eugenics, as places to separate people with I//DD from the general population. Or they could be seen, as Wallace viewed them and Fernald later came to view them, as places where people with I/DD could be helped to lead meaningful and fulfilling lives. Unfortunately, the prevailing view today is that that former perspective regarding institutions is the only valid one.
Bellotti and Dukakis changed the game
Grenon documents Wrentham’s history virtually year by year from the early 1900s until 1993 when Judge Tauro officially disengaged from the Ricci litigation. It includes many photos from throughout that period.
In addition to consulting numerous primary sources, Grenon interviewed many key figures in the history of Wrentham and of institutional care in Massachusetts. Among those were former Governor Michael Dukakis and his then Attorney General Francis Bellotti.
Bellotti, who died yesterday (December 17) at the age of 101, took the unusual and courageous step in response to the Ricci lawsuit of refusing to defend the conditions at Wrentham, Fernald, Belchertown and the other state schools in the 1970s.
As Grenon explains, Bellotti’s refusal as attorney general to defend the administration – a position that Dukakis fully supported – meant the state would cooperate with the plaintiffs in the case. Those plaintiffs included Ben Ricci, who had brought the original lawsuit on behalf of his son, who was a resident of the then Belchertown State School.
Founding of COFAR
Grenon also interviewed John Sullivan, one of the founders of COFAR, whose daughter, Colleen Lutkevich, continues to work with this organization.
Sullivan, who died in 2017, told Grenon in 2012 that he had helped start COFAR in 1984 as a counter to the Massachusetts Arc and to Rhode Island Senator John Chaffee, both of whom were pushing to close all of the state schools and transfer all of the residents to privately run, community-based group homes.
Sullivan and other like-minded advocates, including Ricci, Charles Hart, Richard Krant, and Louise Johnson, believed that the improvements brought about by the Ricci litigation had transformed Wrentham and the other state schools into the best possible settings for their loved ones by the mid-1980s.
Personal experiences
But Grenon’s book is based on more than historical research and even interviews. She also recounts her own experiences at Wrentham, having worked there for 34 years in a variety of capacities, starting in 1981. Her personal descriptions draw the reader into the day-to-day life and drama of the institution during her time, and add to the context and richness of the center’s history.
Grenon started working at Wrentham after graduating from college with a degree in psychology. Her first job was as a direct care worker, a position referred to at the time as a “Mental Retardation Assistant.” She spent most of the next four years with the “heavy hitters” — women in the D Building who were given that appellation because they had behavioral problems.
In 1982, Grenon was promoted to ward supervisor, and then became building manager, and later back-up shift supervisor and crisis responder.
In 1985, because of her separate degree in equestrian science, she became director of a new therapeutic horseback riding program at Wrentham. And from 1992 until 2014, she served as a coordinator in public relations at Wrentham and as a community liaison.
In 2016, Grenon discussed her book and emerging therapies and models of care for people with I/DD in a series of interviews, including this one.
Opposition from DDS
But as Grenon explained to me, the Department of Developmental Services (DDS) was not happy with her book. She said that when top DDS administrators learned she was writing it, they wanted her to emphasize only “the most egregious” aspects of Wrentham’s history.
The reason for DDS’s position is clear. Since the 1990s, a succession of administrations in Massachusetts has been intent on shutting down state-run residential care and privatizing the services. But Grenon told the Department officials she wanted to tell the whole history of Wrentham, both good and bad.
The result, she said, was that she was repeatedly threatened by DDS with termination in the last few years of her employment, and was later even banned from visiting the campus.
Grenon said that at a meeting with the DDS administrators in 2013, “They all wanted to know why I wanted to present the facility in a positive light, and I told them something like, ‘up until now, everything that has ever been written about facilities has been very negative. I’ve found some surprising evidence to the contrary and I want to present it. I don’t just want to regurgitate egregious conditions, I want to present facts.’”
Grenon said, though, that the reply from one of the administrators at the meeting was, “’We would really rather that you present the egregious conditions. . .’” She said she was also told “not to make the facility look good.”
As we’ve argued before, it is vitally important to study the history of the care of persons with I/DD in Massachusetts and elsewhere, if only to avoid repeating the mistakes of the past. It is just as important to recount the entire history, and, as Grenon said, to present the facts.
It is only in recounting the full and complete history of any person, event, trend or institution that valid conclusions can be drawn as to the meaning of the past and how to plan for the future. That is what Grenon sought to do in writing her book; and, in our view, she fully succeeded.
Legally blind and quadriplegic woman ‘thriving’ at Hogan Center
After initially being denied a placement at the Wrentham Developmental Center, Kristen Robinson has been living and “thriving” since June at the Hogan Regional Center, her sister, Kim Meehan, said last week.
Kim said the family is now ready to talk about the happy outcome of their months-long struggle to get Kristen, who is 51 years old, into an Intermediate Care Facility (ICF) in Massachusetts.
“She (Kristen) is so happy,” Kim said. “ She’s joyful, cared for, loved. They love her at Hogan. She’s treated the way she should be treated.”
Hogan, which is in Danvers, and the Wrentham Developmental Center are the state’s two remaining ICF-level congregate care centers. But as we’ve noted many times, it is extremely difficult for people to get admitted to them.
Kristen and Kim on wheelchair swing at Hogan Center
As we reported in May, then Department of Developmental Services (DDS) Commissioner Jane Ryder initially promised Kristen’s family she would admit Kristen for evaluation and rehabilitation to Wrentham’s May Center medical unit.
But Ryder reneged on that promise just a few days later, saying she hadn’t been aware that only Wrentham Center residents are admitted to the May Center unit. This was despite the fact that Kristen is profoundly intellectually disabled, legally blind, and quadriplegic, and has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
DDS rarely admits individuals to either ICF because the Department maintains that so-called community-based residential settings are less “restrictive.” But DDS had been unable to find either a community-based group home or a nursing home that could meet Kristen’s needs.
Yet, while Ryder did go back her promise to admit Kristen to Wrentham, Kim said Ryder then gave the family some other options. One option was for an “evaluation” of Kristen at Hogan; and the other options were for short-term placements at either of two private rehab facilities or a state-operated group home.
Kim said the family visited all of those settings and selected Hogan even though it is a three-hour round trip from Kim’s home in Norfolk. “We felt she would be safe there,” she said.
Kristen was admitted to Hogan on June 17. It is not clear whether the placement is considered by DDS to be permanent, but Kim said she and Karen are prepared to fight to ensure that she remains there.
Hogan offers full range of services and activities
Kim maintained that all of Kristen’s needs are being met at Hogan, particularly her need for 24/7 nursing care.
Prior to her placement at Hogan, Kristen had been confined for weeks at Faulkner Hospital in Boston following a choking incident in her mother’s home.
Kristen had lived her entire life under her mother’s care in Walpole. But when their mother died a year ago this month, Kim and her sister, Karen Brady, and their husbands began to take turns caring for Kristen and staying overnight with her.
Given Kristen’s medical complexities – particularly those related to swallowing and choking – it is safest for her to be at a facility like Hogan where medical care is available on site, Kim said. At Hogan, Kristen doesn’t need to be taken off campus for medical care or for her day program.
Kim said Kristen has been receiving physical and occupational therapy at Hogan, and is attended by doctors, nurse practitioners, and many other care givers. She is also regularly taken outside for recreational activities, including the use of a swing set built for people in wheelchairs. And she attends arts and crafts, music nights, communal dinners, and enjoys visits from school bands.
Kim said she is looking forward to having Kristen attend Hogan’s greenhouse this winter to work on making wreaths. “She always enjoyed planting flowers with our mother,” she said.
“Normally, at age 22, the educational system falls off,” Kim noted. “Here they work with her daily. This is a community like no other. When we looked at the group homes DDS showed us, people were just sitting around watching TV.”
Cleanliness highlighted
Kim said she would also like to “highlight the cleanliness at Hogan. You could eat off the floors there.” Kristen is also very clean now, she said. When she was at the hospital, the staff were not able to shower her, she said.
Kristen’s potential still being assessed
Kim said that since she has been at Hogan, Kristen “is doing things we never knew she could do, and they’re still in the early stages of determining her capacity.”
For instance, physical therapists are working with her on standing up. “She hasn’t stood up since she was a little kid. She is now feeding herself with assistance,” Kim said.
Kim added that clinicians at Hogan think Kristen may be able to understand more than her family had previously thought. Early on, they found that Kristen could identify six colors. “She was never able to do that before.”
The Hogan clinicians also think Kristen may be able to communicate with a communication board. “They’re doing assessments to see what she can comprehend. They are learning things about her that we didn’t know. It could take years to find out what’s going on in her mind,” Kim said.
Similar assessment from mother of man admitted to Wrentham in 2022
Kim’s assessment of Hogan is similar to Janice Marinella’s assessment of the Wrentham Center. Janice’s son Jeremy was admitted to Wrentham in 2022 after years of poor care in the community-based system.
Janice told us at that time that, “I no longer see it (Wrentham) as institutional. I now see the love and devotion the staff gives my son.” She added that even though the buildings are old, her son’s unit is “immaculate.”
It is unfortunate that the Healey administration continues to subscribe to a long-held ideology that care in Massachusetts’ two remaining congregate-care centers is unduly restrictive, and that better and more appropriate care can be found in the community-based and largely privatized group home system.
The evidence clearly shows this ideology is wrong. It doesn’t matter how many people are served by a care setting as long as the ratio of staff to residents is adequate and the staff are caring, well trained, and motivated. The testimony of Kim Meehan, Janice Marinella, and others we have spoken with over the years shows that is certainly the case at the Wrentham and Hogan Centers.
Is RFK Jr. open to reversing the longtime federal policy of phasing out state-run and ICF care?
Late last month, we sent a message to Robert F. Kennedy Jr. via his Make America Healthy Again (MAHA) website, asking whether he would support the preservation of state-run, congregate and group home care for persons with intellectual and developmental disabilities (I/DD).
RFK, who has been nominated by President-elect Donald Trump to head the U.S. Department of Health and Human Services (HHS), has spoken out about what he refers to as the capture of governmental agencies and regulators by the pharmaceutical, agricultural and other industries. He has cited the undue influence of corporate interests in healthcare, in particular.
While there are many people who are skeptical of Kennedy, primarily due to his controversial statements about COVID and other vaccines, our main concerns center around the future of residential care for people with I/DD. Would Kennedy’s efforts to rein in corporate interests in healthcare include reining in corporate providers that contract with states to run group homes for people with I/DD?
In our message to Kennedy, we asked whether he would be “committed to changing the direction in which HHS and the U.S. Department of Justice (DoJ) have long been headed in furthering the runaway privatization of human services and the closures of state-run services for people with I/DD, including Intermediate Care Facilities (ICFs).”
We understand that there are many people competing for Kennedy’s attention right now, and that it might be some time before we hear back. We hope we do hear back.
Privatization proponents acknowledge problems, but oppose the use of institutional resources
As we noted in our message to Kennedy, the privatized system of care in Massachusetts and elsewhere in the nation for people with I/DD is broken.
In Massachusetts, the state Department of Developmental Services (DDS) is funding the privatized group home system at close to $1.7 billion in the current fiscal year — an increase of more than 60% from a decade previously. Yet, thousands of people are waiting for residential placements in group homes that are rife with abuse and neglect and underpay their direct-care staff. The executives who run those corporate providers make exorbitant salaries.
Massachusetts has just two remaining state-run ICFs, which serve as a critical backstop for residential care, and meet strict federal standards for staffing and treatment. They are the Wrentham Developmental Center and the Hogan Regional Center. Yet a succession of administrations has let these facilities die slowly by attrition, and has steadily increased funding to corporate group-home providers.
Also being phased out in this state is a smaller network of state-run group homes, which provide care from well-trained staff. Families and guardians seeking residential placements for their loved ones with I/DD are not informed of these state-run options, and, when they do seek those placements, are routinely denied.
Federal government has pushed for ICF closures
As we noted to Kennedy, this same anti-congregate care trend has long been encouraged at the federal level. The federal Centers for Medicaid and Medicare Services (CMS) and the Civil Rights Division of the DoJ have pursued a relentless policy for years of deinstitutionalization and privatization of services. This policy has been promoted under the guise of civil rights, with the misleading argument that congregate care segregates people with I/DD.
Not only has the DoJ filed unnecessary and unwanted lawsuits around the country to close ICFs, but the federal government has encouraged the closures of important and highly successful programs such as sheltered workshops for people with I/DD. This has been done under the mistaken ideology that all people, no matter how severe their disabilities, can compete and succeed in the community-based system.
However, the U.S. Supreme Court in Olmstead v. L.C. recognized that institutional care is valid and appropriate for those who desire it and who can’t cope in the community.
Yet the single-minded focus of the federal government and other proponents of privatization on eliminating institutional care has caused the proponents to ignore the serious problems with community-based care.
Biden administration increased funding for community-based care, but not state-run ICFs
Over the past four years, the Biden administration increased Medicaid funding to states for home and community-based services. But as COFAR and a key state employee union, AFSCME Council 93, noted in a joint letter to Massachusetts Senator Elizabeth Warren in 2021, the Biden administration was not similarly proposing any additional funding for state-run ICFs.
Many advocates for the disabled are worried today that the incoming Trump administration will reverse the Medicaid gains that the home and community-based system has received under the Biden administration. They are particularly concerned that under the leadership of Kennedy and Mehmet Oz, who has been nominated to head the CMS, Medicaid funding to the states will be replaced by block grants, and individual recipients will be subject to work work requirements.
While we understand these concerns, we would also note that pumping more Medicaid dollars into a flawed, privatized system won’t solve the problems that continue to plague that system.
As we stated in our message to Kennedy, we believe that the states need to reopen the doors of their state-run ICFs and group homes before it is too late. If we lose these critical residential options, we foresee a race to the bottom in the quality of care for thousands of our most vulnerable residents.
However, the Healey administration in Massachusetts, like several before it, takes its cue from the federal government, and is pushing us ever closer to the demise of state-run and ICF-level care.
DDS hearing officer’s denials of appeals for placements at Wrentham Center appear to show bias against families and guardians
It’s becoming clear that the legal division and even the internal appeals division of the Department of Developmental Services (DDS) have a bias against families and guardians seeking residential placements for their loved ones at state-run congregate care centers in Massachusetts.
A decision by a DDS hearing officer last summer marks at least the second time in the course of a year that the Department shot down appeals by families to transfer intellectually disabled persons from corporate, provider-run group homes to the Wrentham Developmental Center.
Concerns downplayed
In both cases, the same DDS hearing officer, William O’Connell, denied the appeals in rulings that used the same language in many instances. And O’Connell appeared to downplay or even ignore concerns raised by the families about a lack of adequate care and meaningful activities in the “community-based” group homes and day programs.
In his decisions, O’Connell stated either that he did not give “substantial weight” to testimony of the families, or that they had not provided “substantial and probative evidence” that their adult children were receiving inadequate services or that Wrentham had more services and less turnover among staff. At the same time, he found to be “credible” every argument raised against the families by DDS in its closing briefs.
In particular, O’Connell didn’t explain why he didn’t give substantial weight to what is arguably easily verifiable and true assessments about the Wrentham Center regarding services and staff turnover. This is clearly due to the fact that O’Connell fully subscribes to the administration’s ideology that all congregate residential care is institutional and therefore bad.
Also, as explained below, O’Connell’s decisions appear to be internally contradictory with regard to whether clients in the DDS system have a right to placements at the Wrentham Center and the Hogan Regional Center in Danvers, which are known as Intermediate Care Facilities for individuals with intellectual disabilities (ICFs).
As we previously reported, O’Connell denied an appeal in July 2023 filed by a father and mother who had been trying to get their son into the Wrentham Center. Last summer, O’Connell denied a second appeal by another mother to gain admission to Wrentham for her son. Then DDS Commissioner Jane Ryder upheld both of O’Connell’s decisions.
We have frequently noted that both ICFs are critical backstops for care in the DDS system. Yet these facilities are being targeted for eventual closure by the administration. Families and guardians of persons needing residential placements are not informed that the two ICFs exist; and, if they do ask for placements there, are almost always denied.
Conclusion stated at outset of decisions
The DDS bias was evident at the start of each of O’Connell’s decisions in which he stated that care in the community in each case had been “successful.”
In both cases, O’Connell stated that one of the “issues presented” was, “Does (the) appeal … entitle (the individual) to a change in residential placement, specifically admission to a specific ICF, after…years of successfully being supported in a less-restrictive community-based residence.” (my emphasis)
It appears from this language in both appeal decisions that O’Connell had already made up his mind before even hearing testimony. He listed, as an “issue presented” (meaning the case had yet to be heard), that the individual’s supports in the community had been successful.
However, in each case, the family had appealed based on an argument that the community-based supports had not been successful.
Also, a guardian in at least one of the cases claimed that her son was leading a highly restricted life in his community-based group home. And both families noted that they found that the Wrentham Center is highly interactive with its surrounding community, and offers many services and activities that are normally not available in their sons’ group homes.
So, the hearing officer’s presumption from the start in these cases that ICFs are automatically more restrictive than are community-based group homes indicates an unwillingness to consider evidence in individual cases that the opposite may be true.
Also, his presumption that care in the community-based system is uniformly successful ignores years of evidence that the community-based system has become highly dysfunctional and is rife with abuse and neglect.
Claims of inadequate services not given weight
As noted, O’Connell actually acknowledged that he didn’t give “substantial weight” to allegations by each family about a lack of specific activities or supports in the community-based system. Instead, he accepted DDS’s assertions that the individuals in each case were “well supported” or “successfully supported” in that system.
In fact, O’Connell used the exact same language in stating in each decision that:
I find credible (DDS’s) testimony that admission to (Wrentham) is not appropriate for (the individual) because there was no immediate risk to (the individual’s) health or safety and no indication that (the individual’s) needs cannot continue to be met in the community.”
O’Connell just updated the name from the first to the second decision.
In both decisions, O’Connell also stated that DDS was “continuing to work” or “willing to accommodate” some of the specific services and supports requested by the parents. But those promises, in the parents’ view, are vague and ultimately empty. If DDS were really committed to doing these things, they would have been done years ago, and the parents would not be appealing for placements at Wrentham.
Hearing officer’s decisions and DDS policy are internally contradictory regarding ICF admissions
In each decision, O’Connell accepted the DDS argument that the federal Medicaid law “does not entitle (the individual) admission to an Intermediate Care Facility at the Wrentham Center… “
O’Connell, as noted, also accepted DDS’s uniform position that each individual “is not entitled to admission because (Wrentham) is not the least restrictive environment available to serve (the individual.” And in each decision, O’Connell added that, “the Medicaid Act choice provision does not entitle (the individual) to choose between ICF or in a community home on an annual basis.”
But DDS, in fact, does offer such a “choice.” It’s just that DDS, not the Medicaid Act, insists the “choice” must always be a community-based home.
DDS requires families and guardians to sign a waiver of ICF care in order to receive DDS services. In what is referred to as a “Choice Statement” on the form, the applicant for DDS services is required to sign the following:
CHOICE STATEMENT:
I ____________________________________(Applicant or guardian) choose to apply for the Home and Community-Based Services Adult Waiver Programs and live and receive my services in the community rather than in an ICF/ID. (my emphasis)
DDS essentially admits here that a choice of ICF care exists in that the Department requires families and guardians to waive that choice in order to receive DDS services.
In fact, O’Connell explicitly stated in each appeal decision that the family applied for enrollment of their child “in the HCBS (Home and Community Based Services) Waiver …, exercising their choice for community rather than ICF services in so doing.” (my emphasis)
Despite that apparent choice, O’Connell stated in both decisions, as noted, that the individuals in question did not have a right under federal law to placement in an ICF. DDS, in fact, asserted in each case that:
DDS avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.
This, in our view, appears to violate federal law, which does confer a right to institutional care for those who desire it. The U.S. Supreme Court, in Olmstead v. L.C., also held that a right to institutional care exists.
Not only does federal law specify that there people who are found to eligible for ICF-level care are entitled to choose it, but DDS and O’Connell both acknowledge that such a choice exists. It is not a real choice, though, if DDS requires families and guardians to waive their right to one of the available options.
It is moreover, disingenuous of DDS and the hearing officer to tie families and guardians forever to community-based care by falsely claiming that those persons had freely chosen it years before in many cases.
What is ultimately so frustrating about this situation is that DDS and the administration as a whole continue to cling to an ideological position against congregate care that ignores reality. They continue to maintain that ICF care is more restrictive than care in the community, no matter what evidence may be presented to the contrary.
And DDS and the administration continue to ignore evidence that community-based care is beset by serious problems. As a result, when families and guardians appeal the inevitable denials by DDS of a full continuum of choice in residential care, the official adjudication process they encounter is anything but fair and impartial.
A compelling new book chronicles a girl’s life at the Belchertown State School
Edward Orzechowski has done it again. He has written a second gripping, as-told-to account of life within the notorious and now long-closed Belchertown State School in western Massachusetts.
The launch of his new book, “Becoming Darlene,” is scheduled for November 23 at 1 p.m. at the Florence Civic Center in Florence, MA.
“Becoming Darlene” is about the life of Darlene Rameau, a former Belchertown resident, as related in a series of interviews with Orzechowski. It follows a similar pattern to that of Donald Vitkus, whose experience before, during, and after Belchertown, was the subject of Orzechowski’s first book, “You’ll like it Here.”
In each case, Orzechowski, a former COFAR Board member, has written the life story of a person who spent most of their childhood at the Belchertown school. When Donald was first sent there in the 1950s, and Darlene in the 1960s, that institution, like a number of others in Massachusetts, was a literal warehouse of abuse and neglect.
It is important to understand that the type of institution that Orzechowski describes in both of his books no longer exists today. Starting in the mid-1970s, while Darlene was still at Belchertown but Donald had long since left it, major upgrades in care and conditions began to be implemented at that and other similar institutions in Massachusetts. These changes were the result of a class action lawsuit first brought by Benjamin Ricci, the father of a former Belchertown resident.
The upgrades were overseen by U.S. District Court Judge Joseph L. Tauro. By the time Tauro disengaged from his oversight of the case in 1993, he wrote that the improvements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”
As Orzechowski notes, Darlene became aware while she was still at Belchertown of the impact of Tauro’s involvement. Suddenly, and seemingly in one day, new, kinder staff appeared. Restrictions and beatings ended, Darlene says. But those changes still took many years to be fully implemented.
In 1996, Belchertown was closed for good. Today, only two large congregate care facilities remain in Massachusetts — the Wrentham Developmental Center and the Hogan Regional Center. Both centers must meet strict federal standards for care and staffing that were made possible by the federal litigation in Massachusetts and in other states starting in the 1970s.
At Belchertown, Darlene was a keen observer of nonstop human suffering, of wards filled with naked, neglected children, and reeking of urine and feces and infested with insects.
As was the case with Donald Vitkus’s story, much of the story about Darlene is about her attempts to cope in the “real world,” after having been discharged from Belchertown. For both Donald and Darlene, the transition was filled with trials and setbacks. Belchertown continued to affect both of their lives in sometimes tragic ways.
“Becoming Darlene” is a true story, but it reads like a novel. It is a page turner. It is at turns disturbing and heart breaking. But as with Orzechowski’s first book, one finishes this second book with a feeling of gratitude for Darlene and for the triumph of her spirit.
Update on our efforts to advocate for families in probate court
We reported last month about our efforts to help family members of persons with intellectual and developmental disabilities who have lost their guardianships and have found themselves legally outgunned in probate court.
In many cases, families can’t afford attorneys whose fees can run into the tens of thousands of dollars.
Even family members that do go into probate court with attorneys often feel outnumbered by the personnel arrayed against them there. Those opponents may not only include the attorney or attorneys for the Department of Developmental Services (DDS), but, in many cases, both the state-funded guardian appointed to replace the family member, and the state-funded attorney appointed to represent the intellectually disabled client.
In some cases, even the guardian ad litem (GAL), an attorney appointed to independently advise the judge, may take what appears to be a position against the family. We have seen cases before involving biased GALs.
In two cases in which we are currently involved, the GALs appear to have sided with DDS and with the state-appointed guardians and attorneys in seeking to remove the parents’ guardianships.
Probate judges open to allowing parents’ advocate to attend sessions
Last month, I contacted probate court clerks’ offices in Worcester and Woburn to see whether I could attend court sessions on behalf of the parents in those two cases. I received conflicting answers from the offices as to whether I, as a non-attorney, could appear as an advocate in the sessions.
However, when I did appear in court in those cases, the judge allowed me, in each case, to stay and stand at the counsel table alongside a mother who is seeking to regain her guardianship of her son.
In one of the two cases last month, Middlesex Probate Judge Thomas Barbar allowed me to speak on behalf of the mother, and then suggested that I “work with” her attorney as an advocate for her. It was encouraging, although it wasn’t quite clear whether I will be allowed to continue to address the judge directly in that case.
In the other case, Worcester Probate Judge Kathryn Bailey said she would allow me to be called as a witness for that mother when her case goes to trial, tentatively in February.
I came away from both sessions with a sense that my attending as an advocate from COFAR at least provided some independent weight to both parents’ positions before the court. Both sets of family members seemed to feel that way as well.
But the jury (no pun intended) may still be out on how effective a courtroom advocate, who is not an attorney, can be, and, perhaps ironically, whether I would be allowed to participate as an advocate if the person I am supporting does not have an attorney.
In that case, it seems possible that I might be seen as acting as the family member’s attorney, which would be illegal. I may, in those cases, only be allowed to attend the court session, and perhaps not speak.
A number of years ago, I tried to attend a probate court session in support of Stan McDonald, who had been seeking for years to regain guardianship of his intellectually disabled son. That case had been impounded, meaning the entire record was sealed from public disclosure, so the judge wouldn’t even let me in the courtroom. That was even though a previous judge had let me attend a previous court session in Stan’s case.
Supreme Judicial Court ruling may support non-attorney advocacy
But even in an impounded case, it seems it may be possible for an outside advocate to be called as a witness for a family member. Even in cases in which the parent or family member doesn’t have an attorney, I think it may be possible to argue that an advocate who is a non-lawyer can intervene as an “interested person.”
In a case known as “Guardianship of B.V.G.,” the Massachusetts Judicial Supreme Court held in 2016 that the grandfather of a young, intellectually disabled woman had the right to intervene in a probate court proceeding in order to gain permission to communicate with her.
Even though the grandfather was not B.V.G.’s guardian and wasn’t an attorney, he was an “interested person” within the meaning of the state’s Uniform Probate Code, according to the SJC. As such, he had the right to intervene in the probate court proceeding in order to remove restrictions on his contact with his granddaughter.
The SJC noted that the Uniform Probate Code (which is contained in the state’s general laws) allows anyone defined as an “interested person” to intervene in a guardianship proceeding in probate court. The high court concluded that an individual can be considered an interested person under the Probate Code simply by being interested in an incapacitated person’s well-being. As such, the grandfather of B.V.G. was clearly an interested person, the high court concluded.
So, I think I could argue that I should be allowed to intervene as an advocate in guardianship cases, based on the argument that I am similarly interested in the wellbeing of the incapacitated client.
DDS objects to our submission of information to the judge
In the two ongoing cases, I submitted written reports to the judges on behalf of the mothers, arguing for the return of their guardianships. It’s not clear if those reports have been accepted by the judges for consideration. In submitting the reports, I applied to “present information” to each judge, using a probate court application form that doesn’t specify that the presenter must be an attorney.
The application form further states that the “attached written statement (of information) is not evidence and that (the applicant) may be requested to testify at Court.”
However, in the Worcester Probate Court hearing, the DDS attorney filed a motion objecting to my submission of information in the case. John Geenty Jr., a DDS assistant general counsel, asserted in his motion that I have “no expertise”; that I have “no first-hand knowledge of the evidence” in the case, and that I was “trying to provide legal representation without a law license.”
During the court session, Judge Bailey allowed me to respond verbally to Attorney Geenty’s assertions. I noted that I have had more than 20 years’ experience in analyzing guardian cases and advising families and guardians in those matters, and that I was not claiming to be an attorney. The judge didn’t contradict me, and then said she would allow me to be called as a witness for the mother. As noted, it is not clear that the judge will consider the information that I submitted.
In the second case in Middlesex Probate Court, I submitted a rebuttal to the Guardian ad Litem’s report in that case, which had found the mother unfit to remain as her son’s guardian. I argued that the GAL’s report was deficient in not having included any interviews of clinicians or other witnesses who were supportive of the mother. As noted, it isn’t clear yet whether the judge in that case will take my report into consideration.
Difficulties in getting legal representation
We are, meanwhile, exploring other options for families such as contacting attorneys that provide pro bono representation.
As we previously reported, we have been trying to help a DDS client who told us she had been placed involuntarily under the guardianship of a DDS-funded provider agency. In that case, the client had asked that a longtime friend and former caregiver of hers become her guardian.
However, in December 2022, the Bristol Probate and Family Court appointed the Cooperative for Human Services, a corporate DDS provider, as the client’s guardian. The Cooperative has reportedly assigned an employee of the organization to provide guardianship services to the client, but the client told us she doesn’t even know who that appointed guardian is and has never met her.
Last month, I emailed four legal advocacy organizations to request that they represent the client in getting the guardian she wants.
I did receive a response on Wednesday (November 6) from the executive director of the Easthampton-based Center for Public Representation (CPR), who expressed interest in meeting with the client and “exploring the kind of help she is seeking.” We are trying to arrange that meeting now.
Two other legal advocacy organizations — the Boston-based Disability Law Center (DLC) and Brockton-based South Coastal Counties Legal Services — stated that they either don’t or can’t handle guardianship cases, while a third — the National Center on Law and Elder Rights — hasn’t responded to us.
As we stated before, the DDS-probate court system appears to be broken in that it doesn’t respond well to families of DDS clients. It particularly doesn’t respond well to families that aren’t represented by attorneys. But we are hopeful that there are other ways in which we can help.
If anyone has any additional insights into these matters, please feel free to share them with us.
Federal IG report finds safety deficiencies at the Wrentham and Hogan Centers, but misses the big issue – What about the group homes?
A federal investigative agency has reported deficiencies in safety and emergency preparedness in Massachusetts’ two developmental centers for persons with intellectual and developmental disabilities.
The October 2024 report by the Inspector General with the U.S. Department of Health and Human Services alleged 44 deficiencies related to life safety and emergency preparedness at the Wrentham Developmental Center and the Hogan Regional Center.
The IG’s report, however, raises a number of questions, in our view. First, will the IG similarly examine safety policies in the much larger, corporate-run group home network in Massachusetts?
The number of privatized, yet state-funded group homes has grown exponentially as developmental centers, also known as Intermediate Care Facilities (ICFs), have been closed over the past decade.
Secondly, why did the IG not address the quality of care in the ICFs and the group homes? It is in the group home system today that the most serious problems of abuse and neglect are endemic.
Thirdly, why not investigate the lack of access to ICFs for people needing residential care, and the misguided efforts to close them?
Finally, how serious were the safety deficiencies at Wrentham and Hogan that the IG’s report identified? The report did not appear to provide sufficient detail to answer that question.
No discussion of seriousness of deficiencies
The IG report stated that as a result of the deficiencies, “the health and safety of residents, staff, and visitors at the two ICFs are at an increased risk of injury or death during a fire or other emergency.” The question is how much of an increased risk?
The deficiencies included such things as fire extinguishers that had not been inspected on a monthly basis; placement of oxygen cylinders in hazardous storage areas; exits in some buildings that were obstructed, sprinkler heads that were “blocked or obstructed” in some instances; portable space heaters that were improperly placed in residential areas; and holes in some ceilings and walls.
While some of those things sound potentially serious, a problem with the report was that it gave few if any details about them. For instance, what else was contained in the hazardous storage areas? How were the sprinkler heads blocked, and how many were blocked?
Strangely, the report never named either of the two Massachusetts ICFs, so it never specified which of the deficiencies were found in which of the two facilities.
The report noted that the portable fire extinguishers that had not been inspected monthly were found in one of the ICFs, although, as noted neither of the ICFs was named in the report. The report also didn’t say how many fire extinguishers in that facility had not been inspected, or how many months had gone by without inspections.
The report didn’t explain what it meant by blocked or obstructed sprinkler heads. In a photograph that was included in the report, it didn’t appear that the sprinkler in the photo was broken, but rather that the sprinkler had been installed in the ceiling of a closet, and that it was partially blocked by objects placed underneath it.
Fire extinguisher with the monthly inspection tag not filled out. From IG report.
Also, many of the deficiencies involved failures to provide documentation. It’s hard to judge the seriousness of some of those findings, particularly because some of them seemed ambiguous. For instance, the report stated that, “Both ICFs did not have a formal communications plan that was updated at least every 2 years.”
What is a “formal” plan versus an informal plan, and does this mean the facilities had no plan at all? There was no explanation or details provided about that.
The report also stated that “one ICF did not have policies and procedures that address the facility’s emergency preparedness plan and identified hazards within the facility’s risk assessment.”
What exactly does that mean? Did it mean that that particular ICF did have an emergency preparedness plan, but didn’t have “policies and procedures that address” the plan? Don’t plans refer to policies and procedures?
Robert Goldstein, commissioner of the Massachusetts Department of Health, which inspects the ICFs annually, responded to the IG report, stating that the majority of the audit findings were “immediately corrected” by the staff of each of the facilities.
Deficiency identified as “obstructed sprinkler head.” From IG report.
It’s also not clear to us why the federal IG singled out the Wrentham and Hogan Centers for this inspection report. We understand that the IG conducts investigations when it is requested to do so by an elected official. Who would have wanted such an investigation done just about the Wrentham and Hogan Centers, and why?
The report itself noted that there are approximately 5,400 Medicaid-certified ICFs in the U.S., and that Massachusetts has just two of them. Four others were closed in this state between 2012 and 2015.
The IG noted that its report on the Massachusetts ICFs is the first in a planned series of audits that will similarly assess compliance with federal “life safety, emergency preparedness, and infection control requirements for ICFs.” So, it does appear that the IG will be conducting similar searches for fire extinguishers without inspection tags and blocked exits in ICFs in other states.
Hopefully, those coming reports will provide more explanatory details about the deficiencies that will surely be found. It would also be nice if the IG were to expand the scope of its investigations to include the broader questions why ICFs around the country are being closed, and what the quality of care is in the group home systems.
We are not holding our breath in anticipation of those broader investigations.
High-profile legal advocacy organization won’t help DDS families in guardianship cases
We have been dealing lately with several cases in which family members of persons with intellectual and developmental disabilities have lost their guardianships and have embarked on difficult quests to obtain legal representation in probate court.
For many, getting an attorney is prohibitively expensive. Even for those who can afford it, finding attorneys with experience in going up against the Department of Developmental Services (DDS) can be frustrating.
For some time now, we have been exploring options for those families who find themselves pitted against both DDS and the probate court system.
One lesson we’ve learned so far is perhaps not to rely on entities that bill themselves as legal advocacy organizations that fight for rights under guardianship.
A case in point concerns two Massachusetts-based and one national legal advocacy organizations that we recently contacted to request free legal help for a woman who receives DDS services and who told us she was placed involuntarily under the guardianship of a DDS provider.
Earlier this month, I emailed the Boston-based Disability Law Center (DLC), the Easthampton-based Center for Public Representation (CPR), and the National Center on Law and Elder Rights (NCLER) to ask whether any of them would represent this person.
All three are legal organizations that maintain that they advocate for the rights of people with disabilities. The CPR and NCLER have so far not responded to me. The DLC did respond, saying they don’t actually handle guardianship cases.
I had emailed the DLC on October 3, the CPR on October 10, and the NCLER on October 17.
The DLC describes itself on its website as a part of “a national network of disability rights agencies investigating abuse and neglect and providing legal representation and other advocacy services to people with disabilities.”
We are, meanwhile, exploring other options for families such as contacting attorneys that provide pro bono representation. And we have begun examining the possibility of having non-attorneys represent family members as advocates in probate court.
Last week, I contacted probate court clerks’ offices in Worcester and Woburn to see whether I could attend court sessions on behalf of two different families that are currently caught up in guardianship battles in those courts. I received conflicting answers from those offices as to whether I, as a non-attorney, could attend those sessions.
Response from the Disability Law Center
As noted, I emailed the DLC on October 3, asking whether that agency might be able to provide legal assistance or representation to the woman who has been placed involuntarily under the guardianship of an organization funded by DDS.
I noted in my email that we understand that the DLC has advocated for the rights of persons under guardianship and for limitations on guardianships where possible. For example, an online DLC brochure on “self-determination” states that:
A person has the right to have the (probate) Court limit a guardianship as much as possible. A person under guardianship has the right to have a guardian who considers the person’s expressed preferences and acts in the person’s best interests. A person has the right to be present and participate in the guardianship hearing. This includes giving the Court evidence and asking questions. A person under guardianship has the right to ask the Court to remove the guardian. (our emphasis)
I stated in my email to the DLC that it appears that at least some of the woman’s rights, as enumerated by the DLC, are being violated under the current guardianship arrangement. She was placed under a full guardianship, yet the guardian is someone who does not appear to be considering her expressed preferences.
I’ll give the DLC some credit for having responded to me. On October 7, Nancy Murphy, the managing attorney for the DLC’s Intake Unit, wrote back to say that the DLC “does not handle guardianship cases.” She added that, “This is to avoid duplicating work that other organizations and the private bar do.” However, she didn’t identify any other such organizations.
Murphy added that, “Our focus areas allow us to better use our very limited resources on our core mission of monitoring and investigating abuse and neglect.”
The DLC has told us before about their limited resources even though they received some $4.3 million in federal, state, and other revenue in Fiscal Year 2023, according to the organization’s 2023 tax filing available on the ProPublica Nonprofit Explorer website.
I wrote back to Murphy, stating that it was disappointing to learn that the DLC does not handle guardianship cases and that such cases are not part of the DLC’s core mission. I noted that we would hope that the DLC recognizes that guardianship is central to the question of the quality of the care of individuals with intellectual and developmental disabilities.
I also pointed out that it appears that the DLC would have a role in implementing pending legislation, which would authorize “Supported Decision Making” (H.4924 and H.4949) as an alternative to guardianship in Massachusetts. The DLC wants to take on this role, as we understand it, because the DLC considers that guardianship “takes away an individual’s personal decision-making rights and responsibilities.”
Yet, I noted, when there is a clear case of an individual whose personal decision-making rights and responsibilities have been taken away by the appointment of a state-funded guardian, the DLC is not interested or has too little resources to advocate for that individual’s rights and responsibilities.
The Center for Public Representation
As noted, I requested legal assistance from the CPR for the DDS client on October 10, and have not received a response as of this date.
The CPR’s 2023 tax filing describes the organization as “providing legal assistance, counsel, and representation to institutionalized, low-income individuals with mental illness or other disabilities at no charge.” In the tax filing, the CPR describes its mission as seeking “to improve the quality of lives of people with mental illness and other disabilities through the systemic enforcement of their legal rights while promoting improvement in services for citizens with disabilities.”
According to the tax filing, the CPR received just over $1 million in revenue in 2023.
We have noted that the CPR’s website states that the organization has developed a partnership with more than a dozen law firms “to directly represent thousands of individuals with disabilities” on a pro bono basis. We will attempt to contact those organizations in coming weeks.
The National Center on Law and Elder Rights
The NCLER describes its mission on its website as providing “the legal services and aging and disability communities with the tools and resources they need to serve older adults with the greatest economic and social needs.”
I stated in my October 17 email to the NCLER that we understand the organization is dedicated to protecting and enhancing the rights of persons under guardianship. As the NCLER noted in a paper on guardianship, “When a person asks for the return of their rights (under guardianship), they very likely have the capacity to make choices—especially with appropriate supports.”
The NCLER appears to be a government organization and therefore doesn’t file a tax form, which would list its revenue. So, unfortunately, there appears to be no available information about that.
As we have seen repeatedly, people need legal representation when appearing in probate court, just as in any courtroom setting. Without it, they are hopelessly outgunned and outmaneuvered.
Unfortunately, the combined DDS and probate court system in Massachusetts won’t help families unless they have the money to hire experienced attorneys. Today, that combined system appears to be broken.
COFAR blog 