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Families concerned they will be prevented from visiting loved ones at Christmas after having been barred on Thanksgiving
A nonprofit organization that was appointed as the guardian of at least two developmentally disabled individuals has imposed what appear to be illegal restrictions on visits to them from their families.
In each case, an employee of the corporate guardian, TLC Trust, Inc., appears to have been involved in preventing the families of Ryan Moran and Naomy Alicea from visiting them on Thanksgiving Day last month.
And in each case, Ryan’s and Naomy’s parents are concerned they will similarly be barred from visiting them in their Worcester-based group homes over the upcoming Christmas holidays.
The family members maintain in each case that the visitation restrictions have resulted from their complaints that their loved ones have been subjected to abuse or neglect in their provider-operated residences.
Naomy, 37, has an intellectual disability (ID) and cerebral palsy. Ryan, 29, has ID and is on the autism spectrum.
Hilda Natal, Ryan’s mother, said that the Department of Developmental Services (DDS) had Ryan placed in a group home run by Venture Community Services in 2020, when he was 24.
Naomy has been living in a separate group home in Worcester, which is operated by the Seven Hills Foundation. Both Venture and Seven Hills are DDS-funded residential providers.
Members of both families contend that their guardianships of their loved ones were removed for questionable reasons. DDS successfully petitioned in Worcester Probate Court to have TLC Trust appointed as the guardian of each individual instead.
It is unclear why TLC has been appointed as guardian of these clients. TLC’s website states that the organization primarily administers trusts with a minimum value of $100,000 for persons with developmental and other disabilities.
While the TLC website says the organization can also act as a corporate guardian for persons, the website further states that, “First priority for this (guardianship) service will be given to those individuals who have a trust relationship with the organization.” It does not appear that any such trust account with TLC exists in either Ryan’s or Naomy’s case.
We believe the visitation restrictions violate DDS regulations, which state that DDS clients have the “right to be visited and to visit others under circumstances that are conducive to friendships and relationships.” Also, the individual’s family members “shall be permitted to visit at all times, unless the individual objects…”
Visitation restrictions correlate with allegations of abuse or neglect
In both cases, the visitation restrictions appear to have followed from allegations by the families of neglect or abuse by the staff.
In each case, DDS and the corporate guardian appear to have blamed the families for causing problems such as allegedly causing agitation in their loved ones after their visits. But while clients may well become agitated, especially at the end of a visit, the cause of that agitation may actually be that the family member is leaving the client alone with the staff.
If there is neglect or abuse by the staff, that can be sufficient reason for a client to become agitated when the family member leaves.
Commissioner’s help sought in allowing visits
On November 25, I wrote to DDS Commissioner Sarah Peterson to urge that DDS allow Ryan’s family to visit him on Thanksgiving Day. Since then, we learned that a similar prohibition on visits was imposed on Naomy’s parents, and that TLC and its employee, Diane Parker, were involved in each case in imposing the restrictions.
As noted, neither family was allowed to visit on Thanksgiving. We are urging the Department to allow family visits during the Christmas and New Year’s holidays and to review the actions of TLC in restricting family visitation in each case.
Last week, Commissioner Peterson responded, thanking me for “reaching out with (my) concerns,” and saying she had “followed up with the local teams on the specifics of these cases. While I know you understand that I cannot comment on specific cases, please be assured that they are engaged and will follow up,” she wrote.
Peterson added that, “In terms of TLC Trust, Inc. serving as a guardian, I cannot speak to their requirements for taking private pay cases (which you identified from their website), but I can tell you that TLC Trust qualified through state procurement procedures to receive and accept appointments from DDS.”
Naomy’s case
Lizvette Rivera, Naomy’s mother, said she lost her guardianship of Naomy after a former family acquaintance made several accusations against Lizvette in 2018, which Lizvette and her other daughter, Catiria, claim were false.
DDS petitioned in Worcester Probate Court in 2018 to remove Lizvette as guardian and install TLC. Lizvette said her removal was based on the false accusations made against her, which were nevertheless presented as true in a Guardian ad Litem report to the Probate Court in 2019.
Lizvette and Catiria alleged numerous health scares at Naomy’s group home. They said that in one case, Naomy developed a urinary infection that required hospitalization because she was forced to shower by herself even though her family had repeatedly said she required support.
Naomy was subsequently prescribed medication that Lizvette and Catiria claim negatively altered her behavior. But when they questioned this, the residential staff imposed further visitation restrictions on them. They said they are frustrated by their inability to receive health information about Naomy from medical professionals, especially in light of her health complications.
Ryan’s case
Ryan’s mother and father, Hilda Natal and Jose Moran, said they have been barred from visiting him since early October because their visits were allegedly causing him emotional distress. As noted above, we strongly question whether it was the case that their visits could have caused that.
Jose said that on Thanksgiving day, he and Hilda tried to visit their son, but that the group home manager called Parker, the TLC Trust employee, who said visits were not being allowed by a DDS attorney. The house manager then threatened to call the police, and Hilda and Jose left.
Phone taken
Jose said that the group home staff also recently confiscated Ryan’s cell phone, with which he had been communicating with his parents on FaceTime. Jose said a staff member told him the phone was being kept in the group home office because the phone was not working. But Jose questions that because the phone is new. Without the cell phone, Ryan’s parents are only able to communicate with him via the group home’s landline phone in the office.
Hilda also said that when Ryan did have his phone, group home staff would stand outside his room, listening to his conversations. She said that in October, the house manager said Ryan would be required to leave his bedroom door open when he talked to his parents on his phone.
The DDS regulations cited above state that clients have the right to have reasonable access to a telephone other web-based communication, and the right “to make and receive confidential communications.” They also have the right “to keep and use personal possessions.”
Judge blames parents, but provides few details
In Ryan’s case, a probate court judge appears to have sided with DDS and TLC in finding that his parents’ visits to him were “problematic.” In a December 9, 2024, document titled, “Brief Findings and Rationale,” Worcester Probate Court Judge Roxann Tetreau stated that “visits with (Ryan’s) parents at the group home …would result in (Ryan) engaging in behaviors after they left.” As a result, the judge said, the group home and TLC restricted family visits.
Tetreau’s findings, however, provided no supporting details. The judge did state that: “It is again clear from the evidence that Jose and Hilda love their son…They do not, however, understand what (Ryan) needs…” The judge appears, however, to have accepted DDS’s and TLC’s claims about Ryan’s parents and to have disregarded the parents’ point of view.
Abuse and neglect of Ryan
There was also no mention in Tetreau’s findings of Hilda’s allegation that Ryan was repeatedly abused by staff in a day program job he had, starting in 2017. She said the abuse caused Ryan to have an anxiety crisis, and she then told him to stop working there. After that, she said, DDS petitioned in probate court to remove her as Ryan’s guardian. She said DDS made false statements in court about her and Ryan.
Neglect and restrictions on visits
Neglect and severe restrictions on family visitation imposed by group home providers seem to go together, and we have brought several of those cases to the attention of Commissioner Peterson in recent months.
When there is neglect and family members complain, the instinct of providers and DDS is often to deny families access to their loved ones in their residences. That way, the neglect itself does not have to be addressed.
We are asking that DDS investigate the allegations of abuse or neglect in each of these cases and to work with the families to find more suitable residential settings.
In the meantime, we are urging Commissioner Peterson to ensure that both of these families are allowed to visit their loved ones over the Christmas and New Year’s holidays.
Criminal charges against mother, who devoted herself to care of her disabled son, finally evaporate
Starting last year, Lisa Attenazio, the mother of a man with neurodevelopmental disorders, suddenly found herself fighting not only the state system of care in Massachusetts, but the court system as well.
For 27 years, Lisa maintains, things had gone smoothly for her and her son. But then her son’s girlfriend moved in with him, a state-funded attorney got involved, and things suddenly came crashing down. Lisa’s son has autism, aphasia, a disorder that impedes language comprehension and memory, and anxiety.
First, Lisa’s guardianship of her 27-year-old son was suspended, and a state-funded, temporary guardian was appointed in her place. This happened in August 2024, five months after her son’s girlfriend moved into his Winchester apartment with him and helped him retain the attorney, according to Lisa.
The attorney accused Lisa, without evidence, of “terrorizing her son” and petitioned in probate court to remove her as guardian and replace her with a guardian employed by the state.
Then in September 2024, Lisa was accused by the girlfriend of assaulting her and of violating a no-trespassing order that the girlfriend and Lisa’s son had taken out against her. And in June of this year, even Lisa’s son accused her of assault against him.
Lisa contends the criminal assault charges and the attorney’s allegations were manufactured against her out of whole cloth, and that she has never harmed anyone. She has many friends and supporters who say the same thing.
She claims her son was manipulated into pressing the assault charge against her and was also manipulated into frequently calling the police against her. She said he had never done that prior to his girlfriend moving in.
But Middlesex District Attorney Marian Ryan nevertheless pursued the felony assault charges against Lisa in both instances. Lisa’s son was prepared to testify against her in each case. (We are not disclosing either Lisa’s son’s name or his girlfriend’s name in this post.)
For a time, it appeared the probate court, the Winchester police, the District Attorney and even the Department of Developmental Services (DDS) and the appointed guardian had lined up together against Lisa to destroy her relationship with her son. “I was portrayed as someone whom I am not, and the lies, manipulation, brainwashing, and coercion have kept coming,” Lisa said.
Found not guilty
On Monday of last week (September 29), Lisa was found not guilty in Woburn District Court of the charge of assaulting her son. Judge Michael Callahan agreed that there was no evidence to indicate Lisa had assaulted him.
Roughly a month earlier (on August 19), the felony charge against Lisa of assaulting the girlfriend was dismissed after the girlfriend pleaded her Fifth Amendment right against self-incrimination.
But these two instances of vindication have come at a big cost, Lisa said. She is still fighting to get her guardianship back, and believes her son has regressed mentally and emotionally as the months of separation from her have gone by.
In August, Lisa even had to move out of her apartment, which was in the same building as her son’s apartment. She said she was living in constant fear of either her son or his girlfriend calling the police on her. Her court-appointed attorney in the assault cases against her, Paul Lawton, told her this was the saddest case he had ever seen.
By way of disclosure, I have acted on behalf of COFAR as an advocate for Lisa in probate court.
Mother supported son’s independence
Lisa had always gone the extra mile to be the best mother she could to her son.
In March, I first wrote about Lisa’s case, but used a pseudonym for her at the time. We are using her real name now because the issue has, in a key sense, shifted from her son to her.
Lisa contends her son is susceptible to manipulation by people who may not have his best interests at heart. She said this has been well-documented throughout his life.
As we originally reported, Lisa’s son wanted independence, and Lisa arranged with his clinicians to let him have his own apartment in Winchester in November 2023. At the advice of the clinicians with the Lurie Center for Autism, a division of Mass. General Hospital, Lisa herself moved into the same building, two floors below her son so she could be his “’safety net,’” in the words of the clinicians.
A few months later, in February 2024, Lisa’s son’s girlfriend moved in with him. Lisa said she believes her son’s girlfriend is not cognitively impaired although she is legally blind. Lisa said, however, that the girlfriend is able to see well enough to ride an E-bike and a motor scooter in the town of Winchester.
In March 2024, Lisa said, the girlfriend arranged for her son to be represented by a state-funded attorney. Lisa suddenly found herself accused by the attorney of being “emotionally unstable,” of “terrorizing” her son, and of refusing services for him. She said she was even accused at the time by the girlfriend of stealing her son’s car, when in fact, she owned the car.
Despite the fact that no questions had been raised about Lisa as a parent for the previous 27 years, a Middlesex County Probate court judge appointed Eva Toscano, who has worked for the Department of Mental Health, as temporary guardian for Lisa’s son in August 2024. Toscano had never known or met him. In court, DDS has supported the removal of Lisa as guardian.
Lisa maintains this all occurred because a guardian ad litem, appointed by the probate court judge, issued a report on the matter that was biased against Lisa. Our analysis of Lisa’s notes, which are based on the non-public GAL report, support her conclusion.
Lisa was then forbidden from talking to her son’s doctors, and even from entering her son’s apartment after her son and his girlfriend obtained a no-trespass order against her in September 2024. The Winchester Police Department subsequently filed a no-contact order with Lisa’s son. Lisa was also removed as her son’s representative payee for his Social Security payments.
Facing potentially years in prison
In September 2024, at the time of the issuance of the no-trespass order, Lisa was accused by the girlfriend of having assaulted her, which Lisa denied, and with violating the no-trespass order. Lisa now found herself facing criminal assault against a disabled person, a felony which carries up to a three-year prison sentence, and trespassing charges.
Lisa maintains that it was the girlfriend who assaulted her during a confrontation between the two of them in the son’s apartment. The Middlesex D.A., however, charged only Lisa in the matter. Lisa said the police ignored her when she suggested that the girlfriend be arrested.
A trial was set in Woburn District court for August 19 on the assault charge. However, just prior to the scheduled start of the trial, Lawton, Lisa’s attorney, asked the judge to appoint an on-duty criminal defense attorney to inform the girlfriend that if she did testify against Lisa, she could open herself up to prosecution for assault against Lisa.
That appointed attorney also advised the girlfriend that she could assert her Fifth Amendment right against self-incrimination. The girlfriend reportedly admitted to the attorney that she had been the aggressor and had struck Lisa first.
When the girlfriend was brought into the courtroom, the judge asked if she intended to plead the Fifth, and she said yes. At that point, the prosecutor said she had no basis for prosecuting the assault charge against Lisa, and asked that it be dismissed.
Second assault case also fizzles
On June 27, nine months after the first alleged assault incident, Lisa was accused by her son of assaulting him. Lisa was at that point facing two sets of assault charges as a result, and potentially five years in prison.
The police report regarding the second case involving Lisa’s son implied to us that her son was slightly injured by accident, through no fault of Lisa’s. On September 29, Woburn District Court Judge Callahan agreed. He found Lisa not guilty of the second assault charge.
Lisa maintains that her son was turned against her by his girlfriend in a way that doesn’t fit his personality. “He is not able to fully understand or comprehend or fully realize what’s going on but because he is rule governed,” Lisa said. “He will listen and do exactly what people tell him. Where is his voice in all this?”
Police reports disputed
Lisa was arrested on the first assault charge on September 17, 2024, after she allegedly violated the no-trespass order obtained by her son and entered his apartment. She maintains that her son obtained the no-trespass order at the urging of his girlfriend.
The Winchester Police report of the incident states that after being informed of the no-trespass order, Lisa went to her son’s apartment to collect some of her belongings there and to give her son her key fob for his apartment.
Lisa said she didn’t think the no-trespass order had yet gone into effect because her son led her into the apartment. She said she knocked on the door of the girlfriend’s bedroom to pick up some of the belongings, which she believed were there. The girlfriend claimed Lisa barged into the room.
According to the police report, the girlfriend said that after Lisa barged into the room, Lisa rushed at her and pulled her hair, struck her left brow with a closed fist, and then struck her in the left collarbone. The girlfriend also told police she “is almost fully blind and is legally disabled.”
Lisa told the police that when she entered the room, the girlfriend began to swear and scream at her and then shoved her and scratched her face and arms. Lisa claimed the girlfriend put her into a headlock, and she had to call her son to come and help her.
Although the two accounts were sharply conflicting, the police arrested only Lisa and booked her and fingerprinted her at the police station.
On August 19 of this year, the girlfriend reportedly admitted she struck Lisa first in the incident. As noted, the girlfriend subsequently asserted her Fifth Amendment right against self-incrimination, leading to the dismissal of the case.
Second assault case was an apparent accident
Lisa said the second case in which she allegedly assaulted her son occurred on June 27 when she tugged on his sleeve as he tried to leave her apartment following an argument about his use of the car. She said she was concerned that she remained responsible for paying for the insurance on the car even though she had been ordered to cease all contact with her son.
The Winchester police report of that incident states that Lisa “did assault and beat” her son – a charge that carries a potential sentence of 2 ½ years in prison. But that report described what largely appears to have been an accident.
According to the report, Lisa’s son called the police to the scene and told them he had attempted to leave Lisa’s apartment during the argument over the car, and that Lisa grabbed his t-shirt. The report stated that the son backed away, causing the shirt to tear. Then, it said, he lost his balance and fell backwards against the wall of the hallway and received a red mark or scrape on his back.
Lisa maintained that the police report was inaccurate in that respect. She said she grabbed the sleeve on his t-shirt and that after the sleeve started to tear, she let go, and her son tore the rest of his shirt. She said her son then turned and tripped and fell against the wall at her neighbor’s doorway, some 10 feet away.
The police report noted that Lisa told the police she was not being violent when she grabbed her son’s shirt, and that she would never hurt her son. She said she had offered to put aloe on her son’s back where he had scraped it. (Lisa said she actually did put aloe on his back.) The son later declined an offer by the police to be checked out at a hospital or to receive EMS assistance.
Lisa was nevertheless charged with assault and battery and was handcuffed, taken to the police station and kept in the lockup for seven hours before being released on $200 bail.
Lisa maintains that the Winchester police do not like her, possibly because they were frequently been called by her son or by his girlfriend to the apartment when there were disputes with Lisa.
Mother’s financial assistance continued
Despite the fact that the girlfriend and son had both filed the assault charges against Lisa, she said she continued to be expected, even by the state, to provide financial assistance to them.
For instance, Lisa said that on July 27, a month after filing the assault charge against her, her son left a note on her apartment door, asking if she was “still willing” to provide him with money to attend a summer camp in Maine for a week, and that she should leave it in an envelope in her car. The note ended, “Love and miss you xoxo.”
Lisa said the money would have been used by both her son and his girlfriend for spending-money at the camp in Maine. Even Toscano, the state-paid guardian, sent Lisa a message that day, also asking her to leave the money in her car for her son.
Lisa said she did not provide any money to her son for the summer camp, but the following day – July 28 – she received an alert from her son’s bank that he had incurred an overdraft in his checking account. So she did send $200 to his account to prevent other checks from bouncing.
Previously, on May 27, I emailed both the DDS attorney in Lisa’s probate court case, Barbara Green-Whitbeck, and her son’s court-appointed attorney, Mary Ann Remillard, expressing COFAR’s concern that Lisa was “expected and depended upon to act as both (her son’s) protector and financial provider even as her guardianship and authority as representative payee have been removed.”
At that time, I noted that Lisa’s son and his girlfriend had taken a trip to New Jersey and New York. While they were in New Jersey, they were unable to rent a car because they were using the son’s debit card and didn’t have sufficient funds on hand to pay a deposit required when debit cards are used. At that time, the son texted Lisa, to seek help. Lisa was forced to go to her bank to transfer $300 into her sons account in order to allow the car rental process to proceed.
What would have happened, I asked in my email to Green-Whitbeck and Remillard, if Lisa hadn’t been available? Her son and his girlfriend would have been stuck somewhere in New Jersey.
Neither Green-Whitbeck nor Remillard have responded to my email.
It remains puzzling to us that no one with official authority in this case appears to be able to see this matter from Lisa’s perspective.
Thankfully, both of the criminal cases against Lisa have now gone away — the first one when the girlfriend asserted her Fifth Amendment right, and the second when the judge found Lisa not guilty.
But Lisa’s life and her relationship with her son have been totally upended. We hope justice and common sense will prevail in this case and that Lisa will one day get her reputation and her son and guardianship back.
Children and Families Committee had already made up its mind on Supported Decision Making legislation
On Tuesday of last week, Irene Tanzman and I testified before the Legislature’s Children, Families, and Persons with Disabilities Committee against a bill (H.261) that would authorize Supported Decision Making (SDM) in Massachusetts.
The Committee scheduled us last to testify on that bill. I counted 21 people who testified in favor of it. We were 22nd and 23rd, and were the only ones to raise any critical questions about the legislation.
Irene, a COFAR member, testified on behalf of the National Council on Severe Autism. She has also founded the Saving Wrentham and Hogan Alliance, an organization dedicated, as we are, to preserving those two congregate care facilities as options for residential care in Massachusetts.
In our view, the actual purpose of the SDM legislation is ultimately to eliminate guardianships of persons with intellectual and developmental disabilities (I/DD). We maintain that guardianships, however, are the most effective source of authority that family members have to ensure that their loved ones receive adequate care in the Department of Developmental Services (DDS) system.
Co-chairs favor the bill
The Children and Family Committee members asked no questions of either Irene or myself about our position on H.261, yet it’s clear both co-chairs, Senator Robyn Kennedy and Representative Jay Livingstone, strongly favor the legislation.
Livingstone is the main sponsor of the House bill, and Kennedy said a couple of times during the hearing that she hopes this is the year the legislation passes. Kennedy even made a joke that the apparently non-progressive state of Texas has gone ahead of Massachusetts in passing SDM legislation. “We certainly don’t want to fall behind Texas in anything,” she said.
But is SDM really progressive, or is it a back-door means of taking decision-making power away from families? SDM authorizes written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters are expected to provide those individuals with “decision-making assistance” about their care and finances.
We have long pointed out numerous problems and a lack of safeguards in the legislation, which has been repeatedly introduced over the years in Massachusetts. In recent years, the measure has gotten closer and closer to final passage.
Both Irene and I testified that while we think the concept of SDM may be appropriate for high-functioning individuals who may not need guardianship, we are concerned that the legislation does not make any distinction among levels of cognitive impairment.
Perhaps the most onerous provision in H.261, as we have pointed out to key legislators, is that it would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian. The legislation specifically would require those petitioners to state why a more limited guardianship or an SDM agreement is “inappropriate.”
We think that provision may predispose probate court judges to deny guardianship petitions in favor of SDM arrangements.
Thirdly, the legislation does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to DDS.
Unfortunately, none of our proposed improvements or safeguards has ever been adopted by the drafters of the legislation.
Committee asked only one question of anyone
To be fair, only one member of the the Children and Families Committee, Representative David LeBoeuf, asked a question of any of the people who testified on the SDM legislation on Tuesday. Those individuals who testified, all of them supporters of the legislation, included representatives of the Arc of Massachusetts, and a number of legislators, including Senator Joan Lovely and Representative Sean Garballey.
LeBoeuf asked Morgan Whitlatch of the Center for Public Representation, a leading proponent of SDM in Massachusetts, whether she thought provisions in the bill to prevent conflicts of interest and coercion of persons with I/DD are sufficient. Whitlatch responded that she believes those provisions in the legislation are “quite robust.” We would disagree with that assessment.
That lack of questioning of either us or of the supporters, and Kennedy’s cheerleading of H.261 during the hearing, which wasn’t contradicted by anyone else on the Committee, conveyed the impression to us that the Committee has already made up its mind in favor of the legislation. Scheduling the SDM legislation for the Tuesday hearing was strictly a formality.
There is no doubt the Committee will report favorably on H.261 and its companion S.155, and will make no changes to those measures; and the legislation will move on, as it has in the past, through the committee process. We intend to continue to follow the progress of the legislation and alert other committees about it.
Other bills, which we support
During Tuesday’s hearing, the Children and Families Committee heard testimony on other bills as well, a number of which we have supported or would support. Those bills include the following:
H.282, also known as “Tommy’s Law”:
This bill would require that when a disabled individual is discharged from a hospital to a residential facility, a licensed medical professional from the facility must review the hospital’s discharge plan for any life support or other medical equipment. The medical professional must then advise the residential staff about those requirements.
Several years ago, we reported that Maureen Shea’s son, Tommy, who was then 33, was found dead, face-down on his bed, in his DDS-staffed apartment in June 2017. Tommy had an intellectual disability and was subject to epileptic seizures while asleep.
Tommy’s bedroom was equipped with an audio and visual monitor that could alert the staff so that they could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.
Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries, and that they had not been adequately trained in how to position the device. But the nonprofit provider that employed the staff had repeatedly assured Maureen that the staff were trained and were knowledgeable about Tommy’s medical equipment.
After Tommy died, the batteries in the monitor were found to be dead.
Maureen has been advocating for this legislation for many years. She was there to testify in favor of it last Tuesday. We don’t understand why this bill has still not been enacted into law.
H.198, a bill authorizing video cameras in group homes:
This legislation, which has also been repeatedly refiled for many years, would require video cameras to be installed at all entrances, exits, and common areas of residential facilities operated or funded by DDS. As we noted in 2019, we support the bill in concept although we’re not sure how effective the measure, as currently drafted, would be because it would not require security cameras in bedrooms.
H.256, Universal changing stations:
This bill would require that any state-owned public building containing a public bathroom that was constructed or remodeled after January 1, install at least one universal changing station.
A universal changing station is an adult-sized changing table designed to hold at least 350 lbs. It would be located within an enclosed restroom facility and would be for use by persons of any age who require assistance with diapering, and would be accessible by persons of any sex.
Flawed Supported Decision Making Bill once again set for a hearing on Beacon Hill
A legislative committee will hold a hearing next week on seriously flawed, proposed legislation that would introduce Supported Decision Making (SDM) in Massachusetts and make it harder to become a guardian of a person with an intellectual disability.
The Children, Families, and Persons with Disabilities Committee has scheduled the hearing for Tuesday, September 9, at 1 p.m. in Room B-2 of the State House in Boston. We are urging our members and others to attend and testify against the bill (H.261).
Two other bills (S. 155 and H. 264), which would also authorize SDM, are also on the September 9 hearing list. We are urging that those bills be opposed as well.
[IMPORTANT NOTE: To sign up to provide oral testimony, you must fill out this online form prior to Thursday, September 4th at 2:00PM. Same-day, in-person testimony will be accepted, time permitting. Also, you will not be able to sign up for virtual testimony on the day of the hearing.]
As noted below, we think the actual purpose of this legislation is ultimately to eliminate guardianships of persons with intellectual and developmental disabilities (I/DD). We believe guardianships, however, are the most effective source of authority that family members have to ensure that their loved ones receive adequate care in the Department of Developmental Services (DDS) system.
SDM authorizes written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters are expected to provide those individuals with “decision-making assistance” about their care and finances.
We have long pointed out numerous problems with the legislation, which has been repeatedly introduced over the years to implement SDM in Massachusetts. In recent years, the legislation has gotten closer and closer to final passage.
While we think the concept of SDM may be appropriate for high-functioning individuals who may not need guardianship, we are concerned that the legislation does not make any distinction among levels of cognitive impairment.
The implication of the legislation is that all persons with developmental disabilities can benefit equally from SDM. However, as noted below, there has been a dearth of research as to whether SDM arrangements really do benefit people with severe or profound levels of I/DD. In fact, it seems possible that SDM can increase the risk those people face of financial exploitation, in particular.
Additional burden of proof
As we have pointed out to key legislators, the SDM legislation would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian.
The legislation specifically would require those petitioners to state why a more limited guardianship or an SDM agreement is “inappropriate.” We think that provision may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.
Among the other problems with the SDM legislation that we have identified are the following:
- The incapacitated individual is labeled “the decision maker.” There are no distinctions among levels of disability. Thus, there is no consideration in the legislation as to whether persons with low levels of cognitive functioning are capable of making and appreciating life-altering decisions.
- The legislation does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to DDS.
Unfortunately, none of our proposed improvements or safeguards have ever been adopted by the drafters of the legislation.
Lack of research on effectiveness of SDM at different levels of impairment
SDM has been adopted in a number of other states, and there have been some studies concluding it has had positive outcomes for participants. But there has apparently been little or no research as to how effective it has been for people with more severe levels of cognitive impairment. Like community-based care, SDM may work well for high-functioning people, but not necessarily as well for low-functioning people.
In a position paper on SDM, the VOR, a national organization with which we are affiliated, warned that, “In the process of attempting to change guardianship laws, it (SDM) could weaken protections for those who are the most vulnerable.”
The VOR statement added that:
The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making, the more their participation should be included. But, it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation.
VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship. “To eliminate guardianship or make it more difficult for family members and friends to become guardians will leave people with I/DD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent,” the organization’s position paper stated.
Also, as a study in the journal Psychiatry found,
As an empirical matter, it is not proven whether, and to what extent, SDM may be associated with better decisions… greater satisfaction with the decision making process, and an increased sense of empowerment among individuals with cognitive disabilities. Some authors have expressed concerns that SDM, like substitute decision making (guardianship), may expose individuals with disabilities to undue influence or coercion by their alleged supporters, thereby effectively disempowering them.
We think SDM may impose a greater risk of disempowering individuals with I/DD than would guardianships held by family members, in particular. In our experience, family members are more likely to act in the best interests of their loved ones than are professional caregivers, clinicians, and managerial personnel.
SDM statute not actually needed
Finally, we would note that legislation to implement SDM may not actually be necessary. As David English, a Professor of Law at the University of Missouri School of Law, has noted, “Despite the recent flurry of SDM statutes, there is a debate on whether such statutes are needed or useful and a lack of consensus on what features the statutes should contain.”
English pointed out that, “SDM arrangements can be implemented today in all 50 states, statute or no statute, by creating formal, written SDM agreements or well-understood informal arrangements. A good legal advisor can help create an agreement appropriate to an individual’s unique situation.”
That leads us to the conclusion that the real reason for the SDM legislation now before the Children and Families Committee may actually be to discourage and ultimately eliminate guardianship of people with I/DD, no matter how severe or profound their impairments are.
The prime means in the SDM legislation for accomplishing that objective of eliminating guardianship appears to be the provision that establishes the additional burden in court on persons petitioning to become guardians.
At the very least, we would urge that that onerous provision be removed from H. 261 and any of the other SDM bills that the Children and Families Committee may approve and send to the next stage in the ongoing legislative process.
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.
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.
Refiled Supported Decision Making bill contains all of the same flaws as its predecessor
Last year, we worked to stop a flawed bill in the state Legislature that would have introduced Supported Decision Making (SDM) in Massachusetts.
Fortunately, that legislation died at the end of the previous two-year legislative session when two separate committees declined to release identical versions of the bill to the House and Senate floors.
The bad news is that not only has the legislation not surprisingly now been refiled in the new legislative session, but everything we objected to last year has remained in the bill. None of our proposed changes to the legislation that would possibly have made it workable have been adopted in the new draft.
The refiled bill, H.261, is sponsored by Representatives Jay Livingstone and Michael Finn. Livingstone is House chair of the Children, Families, and Persons with Disabilities Committee, and is familiar with our objections to last year’s version of the bill.
Last year, the Children and Families Committee reported the legislation favorably and sent one version of it to the Rules Committee and another version to the House Ways and Means Committee. Neither of those two latter committees acted on the measure, however, and it died at the end of the session.
However, the legislation is again before the Children and Families Committee, and appears to be identical to last year’s version. No doubt, the Children and Families Committee, which has the same co-chairs as last session, will report the bill favorably again in this session.
In the Senate, S. 155, refiled by Senator Joan Lovely, contains much of the same language as H. 261. The Senate bill is also now before the Children and Families Committee.
Mass. Bankers Association still involved
As was the case with the final version of the legislation last year, the Massachusetts Bankers Association would be involved in the implementation of SDM, under this year’s legislation. The lobbying organization would be involved in developing a training program on the rights and obligations of SDM supporters, and would be appointed to an SDM commission that would study the feasibility of a state registry of all existing SDM agreements in the state.
Without safeguards, SDM appears in our view to hold a potential to overturn guardianships of persons with intellectual and developmental disabilities (I/DD).
The legislation would authorize written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters would provide those individuals with “decision-making assistance” about their care and finances.
However, “incapacitation” is not defined in the legislation. Any individual under guardianship is considered under the Probate Code to be incapacitated. The SDM bills do not provide a standard level of capacity of an individual below which SDM would not be feasible.
Under the legislation, the incapacitated individual is labeled “the decision maker.” The legislation, as has always been the case in the past, defines the “decision maker” in an SDM arrangement only as “an adult who seeks to execute, or has executed, a supported decision-making agreement with one or more supporters.”
There are no further qualifications for being a decision maker. There are no distinctions among levels of disability. Thus, there is no consideration in the legislation as to whether persons with low levels of cognitive functioning are capable of making and appreciating life-altering decisions.
The legislation would also introduce conflicts between SDM supporters and guardians; does not direct the probate court to resolve those conflicts; and does not direct the Disabled Persons Protection Commission (DPPC) to enforce a provision against coercion in signing SDM agreements. The legislation also does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to the Department of Developmental Services (DDS).
Additional burden of proof
As we have pointed out to Representative Livingstone and other legislators, the SDM legislation would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian. Thus, we think that this legislation may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.
The legislation specifically would require anyone petitioning in probate court to become a guardian to state why a more limited guardianship or an SDM agreement was “inappropriate.” (emphasis added)
That additional burden requires a change to the Massachusetts Uniform Probate Code (M.G.L. c. 190B). So, while proponents of SDM often insist that the process of entering into SDM agreements is completely voluntary and informal, there is nothing voluntary about the additional burden the legislation would place on persons petitioning to become guardians of family members with I/DD.
And that raises the question whether signing an SDM agreement is really voluntary for every potential “decision maker.”
Is SDM really voluntary or is that wishful thinking?
Much of the verbiage in the SDM legislation and among proponents of SDM appears to be wishful thinking, particularly, that the process of entering into SDM arrangements is completely voluntary.
The legislation states, for instance, that “evidence of undue influence or coercion in the creation or signing of a supported decision-making agreement shall render the supported decision-making agreement invalid.”
But who would determine whether there was undue coercion in those cases, and how would it be enforced? The legislation doesn’t answer those questions.
Moreover, the bill defines “coercion” as “the use of force or threats to persuade someone to do something.” But people with I/DD often don’t have the level of skepticism or other cognitive defense mechanisms to prevent what may be much more subtle forms of coercion than outright threats or force.
Other wishful-thinking provisions in the legislation include a statement that SDM supporters must “Act honestly, diligently, and in good faith.” Also, that supporters must “Act within the scope identified by the decision-maker,” and that they must “Support and implement the direction, will, and preferences of the decision-maker. “
It is impossible to enforce those provisions because it is often impossible to know in many cases what the will or preferences are of persons who don’t fully understand the choices they are being asked to make.
Similarly wishful is a statement in the legislation that “(SDM) supporters shall not make decisions for the decision-maker.” It is meaningless to assume in every case that a person with ID is meaningfully making key decisions.
Fraud and abuse enforcement provisions are weak
The SDM legislation does appear to recognize that fraud and abuse could be at play in SDM arrangements because it specifically authorizes the DPPC and DDS to petition the probate court to revoke or suspend SDM supporters “on the grounds of abuse, neglect, exploitation or failure of the supporter to follow their roles and responsibilities resulting in serious physical, emotional, or financial harm to the decision-maker…” (emphasis added)
The legislation further states that “a person who has cause to believe that the decision maker is being abused, neglected or exploited by a supporter, may report the alleged abuse, neglect or exploitation to the DPPC.”
However, the DPPC, in particular, does not have the resources to conduct more than a small percentage of abuse and neglect investigations of caretakers. As a result, the DPPC refers most abuse investigations to DDS, which as we have pointed out, raises its own set of conflict-of-interest issues.
As a result, it seems unlikely that either the DPPC or DDS would petition the probate court to revoke or suspend SDM supporters unless there were overwhelming evidence of such abuse.
Seeking to prevent guardianships prior to adulthood
As was the case with previous versions of the legislation, the current House and Senate bills would require the state to promulgate regulations to inform secondary education students of “the availability of SDM as an alternative to adult guardianship.”
So, the intent here appears to be to persuade parents to enter their children with developmental disabilities into SDM arrangements on their 18th birthdays when parents would normally petition for guardianship. The legislation specifically states that at the first IEP (Individual Education Plan) meeting after a student has turned 16, the IEP team must “inform the student and their family or guardian, of the availability of supported decision-making agreements as an alternative to guardianship and conservatorship.”
In addition, the IEP team would be required to assist the child and their family or guardian “in locating resources to assist in establishing a supported decision-making plan if the child and their family or guardian are interested in supported decision-making.”
This is concerning to us because it appears to be intended to discourage families from seeking guardianship when their disabled children turn 18. That, in our view, would be a step toward eliminating guardianship altogether.
Records-sharing requirement raises concern
As was the case previously, the current legislation gives individual SDM supporters the authority to obtain confidential psychological and medical information about the disabled individual, and then requires them to keep that information confidential from others.
That leads to a question: If the disabled individual also has a guardian, why would SDM supporters with no formal relationship to the person also need access to those records? And, if one or more of those supporters was to find something concerning in the records, would they be required to keep that information from the guardian due to the confidentiality requirement?
Weak conflict-of-interest provision
The newly filed legislation does not improve on what was a weak provision in previous SDM legislation regarding a potential conflict of interest that arises when SDM supporters are also employees of DDS-funded group home providers.
The legislation states that:
A supporter shall not participate in any life decision in which they have a conflict of interest. This includes, but is not limited to, any decision in which the supporter, his or her immediate family or partner, a business organization in which he or she is serving as officer, director, trustee, partner or employee has a financial interest or other direct and substantial interest in the outcome.
Such a provision is better than nothing. But even under this provision, an employee of a provider serving the individual could nevertheless serve as an SDM supporter and participate in life decisions in which the provider doesn’t have a direct financial interest. For instance, it could be a possible future financial interest.
In our view, this provision does not fully protect individuals with I/DD against conflicts of interest by supporters. The legislation also doesn’t provide for enforcement of this provision.
We believe employees of providers that offer services to SDM “decision makers” should not be allowed to participate in SDM agreements, period.
We urge people to send emails to the co-chairs of the Children and Families Committee with a link to this post. Ask that the Committee work to finally address our concerns about this legislation.
The Committee co-chairs are Senator Robyn Kennedy at Robyn.Kennedy@masenate.gov, and Rep. Livingstone at Jay.Livingstone@mahouse.gov.
Thanks!
Mother’s relationship with autistic son came apart after what she said was a sudden turn against her by the state
Janet had always had a close relationship with her son Frankie, who has autism. (We are using pseudonyms for the mother and son to protect their identities.)
For years, Janet said, things had gone smoothly with the Department of Developmental Services (DDS), which had provided services to her son while he lived at home with her.
But at the age of 27, Frankie wanted independence, and Janet arranged with his clinicians to let him have his own apartment in November 2023. Frankie had a girlfriend who moved in with him, and that’s when things started to go south, according to Janet.
Janet said the girlfriend arranged for Frankie to be represented by a state-funded attorney, and Janet suddenly found herself accused by the attorney of being “emotionally unstable,” of “terrorizing” her son, and of refusing services for him. She said she was even accused at the time by the girlfriend of stealing her son’s car, when in fact, she owned the car.
The attorney sought to remove Janet’s guardianship of her son, and Janet is now also separately facing criminal charges in this matter of assault and trespassing. We are advocating for Janet in probate court, and are hoping the criminal charges are dropped.
Frankie has aphasia, a disorder that impedes language comprehension, and has anxiety and difficulty managing stress. Janet said Frankie is also susceptible to manipulation by people who may not have his best interests at heart.
Janet said that while Frankie lived with her, she had a good relationship with the DDS area office that served him.
But the area office changed in March of last year, a few months after Frankie moved into his own apartment in a new DDS district. The change of the office was completed roughly at the same time that Frankie’s girlfriend moved in with him.
In an arrangement planned in conjunction with Frankie’s clinicians, Janet moved into an apartment in the same building, two floors below Frankie’s apartment. They no longer lived together, but Janet said she was still able to help her son and be his “safety net,” as of one of his clinicians had recommended.
Janet initially helped Frankie’s girlfriend, who had reportedly been in danger of homelessness, and even reluctantly had the girlfriend’s name added to the lease for Frankie’s apartment. She said she assisted the girlfriend with applications for housing, transportation services, health insurance, ensuring medical appointments, and Social Security benefits.
But Janet said the girlfriend, in return, was far from grateful, and began to try to separate her from her son. She said the girlfriend then helped Frankie file the paperwork for the state-funded attorney to represent him in order to seek Janet’s removal by the court as his guardian. “She (the girlfriend) told me I was the competition,” Janet said.
As noted, Janet found herself suddenly accused in May of last year of terrorizing her son, refusing services for him and stealing his car.
Janet said there was no precedent or evidence for these accusations, yet the state-funded attorney used the accusations as a basis for a motion in probate court for Janet’s removal and the appointment of a new guardian.
The day before the attorney filed the motion, Janet said, she had entered Frankie’s apartment to find Frankie and his girlfriend meeting there with the attorney and with two care workers from the new DDS area office. At that time, Frankie told her the meeting was about removing her as his guardian. She said Frankie said he had been told by one of the DDS workers that he could not continue to receive DDS services if his mother continued to be his guardian.
The court did order Janet’s suspension as guardian in August, and appointed a new state-funded guardian who had never known or met Frankie. Janet was then forbidden from talking to her son’s doctors, and even from entering her son’s apartment after her son and his girlfriend obtained a no-trespass order against her last September.
Janet maintains that none of these things fit her son’s personality. She contends he was totally under the control of his girlfriend.
Then, after the removal of her guardianship, Janet was accused by the girlfriend of having assaulted her, which Janet denies, and with violating the no-trespass order. Janet now found herself facing criminal assault and trespassing charges.
By way of disclosure, I am acting as Janet’s advocate in her ongoing guardianship case in probate court. She also has an attorney in that case and a court-appointed attorney in the criminal trespass and assault case. COFAR does not charge for advocacy services.
As part of her effort to defend herself in probate court, Janet submitted glowing testimonials from friends and colleagues, describing her as a committed mother and advocate for her son.
We have researched and analyzed many guardianship cases involving persons with intellectual and developmental disabilities for many years. Janet’s case appears to fit a pattern in which DDS and its service providers blame parents and other family members and guardians for problems that arise when the care process breaks down (See our blog post last week).
We think that is because family members and guardians have the least power and ability to contest that blame.
Testimonials
Janet submitted six references to the probate court from friends and professionals who vouched for her character and her efforts and value as a mother to Frankie. At least three of the individuals who provided references expressed concerns that Frankie was being manipulated by his girlfriend into turning against his mother. Three of the references were affidavits signed under the pains and penalties of perjury.
One of the references was from Frankie’s church youth group leader, who described Janet as “a phenomenal mother. A rock and an advocate for him.”
A longtime friend of Janet’s stated that should Janet be permanently removed as her son’s legal guardian, “it would be detrimental to his health and safety. He would be lost.”
Another longtime friend wrote that Janet “has persevered to always be there for her son…, and literally showered him with love, respect, patience, and a desire for him to lead as normal a life as possible.”
A former neighbor of Janet’s wrote that Janet “demonstrated patience like no other mother I’ve seen… There is no doubt (Frankie) still requires (Janet’s) guidance. To remove her from this role would be an injustice to (Frankie) after all she has done for him throughout his life and continues to guide him with love and his best interest at heart.”
Mother pushed out of the picture
For the foreseeable future, Janet remains isolated from her son, and is tormented by the conviction that he is regressing into poor behaviors and habits. The state-funded guardian, she believes, is letting this all happen.
“She (the guardian) ignores what I’m telling her,” Janet said, and lately has refused to respond to Janet’s calls and text messages. Janet said she wants the probate judge in the case to understand that she is the only person in Frankie’s life right now who has his best interest at heart. But she’s not sure that message is getting through to the judge.
The judge has so far denied Janet’s request to be allowed to communicate with Frankie’s doctors. DDS, meanwhile, is seeking to remove her as her son’s representative payee for his Social Security payments.
The state-funded guardian is further opposing Janet’s request that she and Frankie undergo counseling together from Frankie’s clinicians.
“My job is to keep (Frankie) safe at all costs,” Janet said. “This is who he is and this is what he requires — supervision.”
Driving in unsafe conditions and trying to tip over a casket
Recently, Janet said, Frankie went out in subfreezing weather at night, with the temperature in single digits, wearing only pajamas and a light jacket, and drove her car to a party. He also drove on another occasion under similar conditions to a mall. “The road conditions were bad,” she said. “There was no reason for him to go. Those things would have never happened under my watch.
“Yet (the state-funded guardian) thinks it was appropriate,” Janet continued. “I had to remind her that was not appropriate given the temperatures that day. What if he were to get a flat tire or had to get out of the car for any reason? That is not appropriate attire and he could freeze”.
In another incident in December, Janet said, Frankie showed up with his girlfriend at a wake for the mother of a friend of Janet’s. Janet, who wasn’t able to attend the wake and didn’t know her son had gone to it, later found out that Frankie had shocked everyone there by trying to tip over the casket while his girlfriend watched. Janet’s friend was furious at her for not having Frankie under her control.
Based on the records we have reviewed and our interviews with Janet, we are concerned that she has been removed as the guardian of her son based on weak or nonexistent evidence. It further appears that a report of a court officer, known as a guardian ad litem, to the judge recommending Janet’s removal was biased against her.
The guardian ad litem appears to have relied on accounts and accusations made by witnesses who are hostile to Janet, and not to have interviewed or else failed to include accounts of witnesses supporting Janet in this dispute. The report even appears to have failed to include Janet’s own rebuttals to the charges against her.
We think that if one considers the entire history of Janet’s care of her son, it is evident that the accusations against her lack credibility. It defies common sense that a mother would care for her son without serious problems or conflicts for 27 years, and then, suddenly become an abuser who “terrorizes” her son and others.
We are working to try to help ensure that justice prevails in this case, and that Janet is reunited with her son and her guardianship is restored. We also hope the criminal charges against her are dropped. This case appears to be a test as to whether the system works even to a minimal degree.
Mother claims retaliation by DDS in termination of ‘poorly run’ residential program for daughter
In July 2023, the Department of Developmental Services (DDS) created what was described as a novel residential program for two intellectually disabled women who had 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 promised by DDS as a long-term solution to the problems associated with the previous placement, and appeared to be a new approach to residential care. It would be a state-run setting that nevertheless promised to be less restrictive and possibly more integrated with the community than would a group home.
It was to be an apartment where the two women could lead independent lives while still receiving Intensive Support Services from DDS.
Mia Cappuccio at Northeastern University recently for Operation House Call, a community-engagement program with medical students that her parents arranged for her to participate in.
But DDS suddenly terminated the program last April, only eight months after it began. Jeanne Cappuccio, the mother of Mia, one of the two roommates, said the termination was an act of retaliation against her for having reported an incident of alleged emotional abuse of Mia by a staff member.
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. Soon after the women moved into the apartment on July 4, 2023, Jeanne said, she realized that only four staff were being made available to the women even though both need care 24/7. As was the case with Mia’s previous group home, few activities were provided in the apartment, she said.
Then, in September 2023, just two months into the program, NRS removed the part-time residential manager of the residence.
That month, Jeanne sent an email to NRS administrators, contending the staff were failing to provide exercise activities for Mia and were allowing Mia to spend her money on junk food even though she had contracted diabetes after engaging in that same behavior in her previous residence.
And, Jeanne wrote, the staff in the new residence were failing to provide information about meals served there; were not working with Mia to participate in household activities such as cleaning her room or doing laundry; and were not providing community-engagement activities for her.
Termination appeared to be an act of retaliation for abuse complaint
According to Jeanne, rather than agreeing to investigate and resolve her concerns, DDS administrators became dismissive and increasingly hostile toward her.
Then came an incident on February 20, 2024, when Jeanne was talking with Mia over the phone and 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.
Jeanne said she tried calling both NRS and DDS to express her concern about the situation. But there was no response, so she drove to apartment. Still unable to get any answers, she filed a complaint with the Disabled Persons Protection Commission (DPPC).
This was not the first such incident involving the staff and Mia. Jeanne said this incident had followed an incident a few months prior in which a staff member, while driving Mia back from her day program, had threatened to kick Mia out of the car and leave her on the side of the road because she was crying.
In addition, staff in the apartment often bullied Mia, according to Jeanne, by doing such things as sending her to her room for being “annoying,” and refusing to let her leave the table after meals until she ate everything on her plate. They often refused to answer questions she had about completing tasks.
On February 21, 2024, a day after Jeanne filed her DPPC complaint, NRS Director Scott Kluge emailed Jeanne, contending she had misrepresented the incident in the laundry room, and accusing Jeanne of “continuing to create a toxic environment for your daughter to live in and for our staff to work in.” As usual, Jeanne said, DDS and NRS were blaming her for shortcomings in care, for which they themselves were responsible.
Kluge, who had not been present in the residence at the time of the laundry incident, maintained that Jeanne’s “behavior was unacceptable,” and then said, “I strongly encourage you to work with the (DDS) Area Office to discuss other service options as clearly this is not working.”
Jeanne contends that Kluge’s February 21 email was a not-too-subtle threat that he might evict Mia from the program in retaliation for her mother’s complaint to the DPPC.
Then, on February 23, 2024, just two days later, Kluge emailed Jeanne to tell her that the residential program would indeed be terminated in roughly a month, and that the cause was a staffing shortage. But Jeanne pointed out that no such shortage was indicated in Mia’s Individual Support Plan (ISP), which had been completed and processed by DDS on February 12, just over a week before. The ISP did not identify any concerns about Mia’s supports or services.
But DDS was not done. On the same day that Kluge announced the termination of the program, DDS’s legal division petitioned in Middlesex Probate Court to limit or possibly eliminate Jeanne’s and her husband Tom’s co-guardianship of Mia. That action had come out of the blue. There was no indication in Mia’s ISP that she didn’t need guardianship from her parents.
Jeanne said that DDS eventually withdraw its petition, but only after she had initiated discovery proceedings against DDS in the case.
Unfortunately, Jeanne’s allegations about the Andover program appear to jibe with complaints we’ve heard from many family members and guardians that both DDS and its corporate providers retaliated against them when they raised concerns about poor care and conditions in DDS-funded programs. (See some examples of that can be found here, here, here, here, and here.)
State Senator Kennedy and other legislators ‘ignored us’
Partly at our suggestion, Jeanne sought support from key state legislators before and after the program termination, particularly from the co-chairs of the Children, Families, and Persons with Disabilities Committee. She did manage to arrange two virtual meetings with a member of the staff of State Senator Robyn Kennedy, Senate chair of the committee.
But Jeanne said that while Kennedy’s aide had promised to set up a meeting with the senator, to which Mia wanted to go, that promise wasn’t kept. She added that she also emailed Representative Jay Livingstone, House chair of the Children and Families Committee, and the rest of the committee members, but never heard back from them.
Pushing ‘self-directed services’
Jeanne contends that in addition to reacting negatively when she raised concerns about Mia’s care in the residence, DDS officials began pushing her to adopt a “self-directed services” model under which Mia would live and receive services in her parents’ home. Under self-direction, the individual or their guardian is given a budget by DDS and is directed to choose their own services and hire their own staff.
Many advocates and family members have expressed frustration that statutory requirements governing self-directed services are not being met by DDS, and that the Department’s allocated budgets are inadequate.
Nevertheless, when Jeanne complained in September 2023 about a lack of activities for Mia and other problems in the residence, DDS Northeast Regional Director Kelly Lawless replied in an email that, “I want to reply to make sure you understand that if you are not satisfied with the services that NRS provides, you should reach out to the Area Office to discuss Self-Direction.”
But Jeanne said that while she did express interest in learning more about self-directed services, DDS never specified a budget for it even though she had asked repeatedly for that information.
Program termination appealed
Jeanne has now launched the second of two administrative appeals of the termination of the apartment program, arguing that it amounted to an eviction of Mia and her roommate without complying with regulations requiring DDS to offer her improved services elsewhere.
Jeanne’s first appeal, which was filed shortly before the program was terminated in March 2024, was quashed by DDS in what appears to have been a violation of a DDS statute and regulation that allow clients to appeal “transfers” from one DDS-funded residence to another. As a result, she refiled her appeal with the state Division of Administrative Law Appeals (DALA) in December.
By way of disclosure, I am acting as Jeanne’s advocate in seeking a DALA hearing in that refiled appeal. DDS initially objected to my role, but was overruled by the DALA magistrate. However, DDS has also filed a motion to dismiss Jeanne’s appeal. We have filed briefs objecting to the Department’s motion.
DDS is continuing to use an argument, first employed against Jeanne at the time the program was terminated, that she has no grounds to appeal to DALA because she took Mia back home with her and Tom just days before the termination, and therefore no appealable “transfer” actually took place.
Our response to that argument is that Jeanne and Tom had no choice but to take Mia home because all services were about to end in the apartment. We maintain that DDS’s argument was and is disingenuous. The termination of the services amounted an eviction of Mia; and that eviction was effectively a transfer. The only difference between an eviction and a transfer is there is no suitable alternative location in an eviction.
We are asking DALA to order DDS to comply with all of the provisions of the transfer statute by acting with reasonable promptness to find another residential program for Mia, which would provide her with improved services and meet all requirements in her ISP. In the meantime, we argue, DDS should be ordered to provide sufficient supports and staffing to Mia in her current location to meet those same ISP requirements.
Mia’s supports and services continue to be inadequate
Since April 1, 2024, Mia has continued to reside in her parents’ home. While Tom is now paid as a shared living caregiver for Mia, Jeanne maintains that both she and Tom, who are in their 60s, are “overwhelmed with the challenges of providing Mia’s intensive supports and maintaining our commitments to our full time jobs.”
Jeanne said she and Tom are dedicating the majority of their time to Mia’s care, including her need for activities, companionship, nutrition, medication, medical appointments, and legal challenges. But it has been inadequate because DDS has not provided Mia with physical therapy nursing, or counseling services for the past year. She said Mia continues to have night terrors and has become more timid and inhibited as a result of the treatment she received from some of the staff in the apartment.
Yet Mia wants to be independent, Jeanne said. “She (Mia) wants to live in a home with a housemate with similar interests and goals and she wants to have friends,” Jeanne added. “She wants to live a full meaningful life in accordance with the DDS rules and regulations. She is not asking for anything above that. It should not be impossible.”
Jeanne said that in March of last year, with the termination of the apartment program looming, DDS Northeast Regional Director Kelly Lawless told her that, “‘What you (Jeanne) are seeking does not exist in DDS.'” She said she responded to Lawless that she “was advocating for adequate care and intensive supports for Mia. I asked her why that doesn’t exist in DDS, and she said that, ‘Your expectations are too high.'”
Clearly, expecting adequate care is not an unreasonably high expectation.
Mia herself seemed to sum it up during a bill sharing session hosted earlier this month by the Massachusetts Developmental Disabilities Council (MDDC), which Mia participated in via Zoom. “I want to help people and be a part of the community,” Mia said during the recorded session, with her mother sitting beside her.
Mia was helped in drafting her statement by a graduate student from Brandeis who was interning with the MDDC. “I want a home where I feel safe and with nice staff that will not yell at me and tell me to stay in my room,” Mia added. “I want to make choices about my life.”
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.
COFAR blog 