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Update: Problematic SDM bill dies at end of legislative session
A problematic bill that would have authorized Supported Decision Making (SDM) as a substitute for guardianships of persons with intellectual and developmental disabilities (I/DD), died at the end of the just-completed two-year session of the state Legislature on Tuesday.
The bill (S. 3132) had passed the Senate in November and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to a remaining “informal” session of the House where it could have been approved on a voice vote, without debate.
As we noted in our previous post, the bill lacked provisions to protect the rights of persons with I/DD and their families and guardians. Last month, we urged the staff of the Ways and Means Committee not to send the bill to the House for final passage.
The bill, which would replace guardianship of individuals with informal teams of “supporters,” will most likely be reintroduced in the new two-year legislative session, which began yesterday (Wednesday). Unfortunately, our guess is that the proponents of SDM will file the same piece of legislation that they have filed several times previously without including our suggestions to improve the bill.
Under the bill, SDM “supporters” would help individuals with I/DD make key life decisions, including decisions about their care and finances. Most people with I/DD currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.
In our view, however, a key piece missing from the SDM legislation so far has been a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.
The SDM legislation assigns the role of the “decision maker” to the person with I/DD. The SDM bills submitted each legislative term thus far have drawn no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD. As a result, we think the legislation presents a potential for financial exploitation of persons with I/DD.
In that regard, we pointed out to the committee that the bill needed a provision prohibiting providers from being involved as SDM “supporters” in helping individuals make “decisions” about services the providers offer.
As we noted, we think SDM is a concept that needs to go back to the drawing board. We would be happy to work this time around with legislators and SDM supporters in drafting a bill that contains the safeguards we’ve noted here and in our previous post.
SDM bill close to passage in Legislature, yet still lacks safeguards to protect individual and family rights
Legislation to establish Supported Decision Making (SDM) for persons with intellectual and developmental disabilities (I/DD) in Massachusetts has gotten close to final passage in the state Legislature.
But, as we’ve said about similar bills in the past, the current bill (S. 3132) lacks safeguards to protect the rights of individuals in the Department of Developmental Services (DDS) system and the rights of their family members and guardians.
The bill, which would replace guardianship of individuals with informal teams of “supporters,” passed the Senate in November, and is now in the House Ways and Means Committee. We have urged key legislators not to pass this bill during the remaining “informal” House session in which the bill would not even require debate or a recorded vote by individual members.
Under the legislation, the SDM supporters would help individuals with intellectual and developmental disabilities (I/DD) make key life decisions, including decisions about their care and finances. Most people with I/DD are currently under guardianship. But SDM proponents maintain that guardianship unduly restricts their right to make those decisions.
In our view, however, the bill continues to lack safeguards to protect individuals with I/DD from potential financial exploitation, and to prevent the marginalization of their family members in SDM arrangements. A key piece missing from the bill is a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.
We recently informed the House Ways and Means staff that a Syracuse Law Review article published earlier this year about SDM pilot projects in Massachusetts identifies, or at least implies, a number of problems or difficulties associated with SDM that are not addressed in the bill.
The lead author of the law review article is Cathy Costanzo, executive director of the Center for Public Representation (CPR), a Massachusetts-based nonprofit law firm that is one of SDM’s major supporters. The article is highly supportive of SDM as an alternative or replacement for guardianship. But among the issues or problems with SDM that the article raises or implies are the following:
Lack of a standard for decision-making ability
The law review article is not specific about the levels of I/DD among the SDM pilot project participants. It states that in a CPR-sponsored pilot project in Massachusetts, there were eight participants who “represented a cross-section of people with varying support needs and from a range of demographics.”
The article doesn’t say, however, whether any of these participants were non-verbal, for instance, or whether they were all capable of understanding the decisions they were making under the SDM model. Our concern has to do with the fact that SDM assigns the role of the “decision maker” to the person with I/DD. Neither the article nor S.3132 discuss whether there is a level of ID below which it is not possible for the participant to appreciate or understand the decisions they are supposedly making.
We hope legislators understand that there is a wide range among levels of intellectual disability (ID), and that those levels have different impacts on an individual’s ability to make decisions. For instance, as described by the American Psychiatric Association (APA), persons with severe and profound levels of ID have IQ levels of 35 or below. The average IQ score is 100.
According to the APA, persons with severe ID comprise about 3 to 4% of the total ID population. The APA notes that for those people, “communication skills are very basic,” and “self-care activities require daily assistance.”
Profound ID applies to 1 to 2% of the ID population who have IQs below 20. Those persons are “dependent upon others for all aspects of daily care, and “communication skills are quite limited.”
For people in those categories, we think the potential for informed decision making about key life decisions, even with support from others, is very low if not non-existent. Yet, S. 3132 makes no allowance for that. The bill draws no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD.
As a Penn State Law Review article about SDM states:
…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes.
Given the diminished decision making capacity among persons with severe and profound levels of ID, we think those people are especially vulnerable to financial exploitation from persons on their support teams who may “help” them make financial decisions that don’t reflect their wishes. See our discussion below about the potential conflict of interest faced by support team members who are also employees of corporate providers that provide services to the disabled individuals.
In these situations, family members of persons with I/DD, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who stand to benefit financially from the clients’ “decisions.”
We think there is a greater potential for SDM to work effectively for people with what the APA describes as mild levels of ID. Mild ID, which comprises an IQ range of 50 to 70, includes about 85 percent of people with intellectual disabilities.
According to the APA, people with mild ID “are mostly self-sufficient with sufficient supports.” Those supports, the APA says, “might include assistance with life decisions.” So, it makes sense to assume that people with mild ID are capable of participating in a team discussion that would result in a decision of that magnitude.
A potentially more problematic group in terms of decision making ability are those persons with what the APA labels as moderate intellectual disability. People in this group, who have IQs ranging from 36 to 49, comprise about 10% of the ID population.
According to the APA, people with moderate ID need support for making “social decisions (particularly romantic decisions).” Independent living may be achieved for this group “with moderate supports such as those available in group homes.”
Once again, S. 3132 doesn’t make distinctions between any of these levels of ID. The bill assumes that all persons with I/DD, no matter how low their level of cognition is, are capable of making complex life decisions.
Conflicts of interest in SDM support teams
As previously noted, members of an individual’s SDM team who are also service providers to that person face a potential conflict of interest when they advise the “decision maker” about making use of the services they provide. The Syracuse Law Review article states that in the Massachusetts pilot project:
…project staff had frank discussions with the Decision Maker and supporters about any potential conflict of interest and how to draft an agreement to minimize the potential conflict, such as having paid supporters not assist with decision-making support for issues that concern services from the agency paying the supporter (my emphasis).
There is, however, no such restriction in S.3132 against providers being involved in decision-making regarding services they provide. We think the SDM legislation needs such a provision.
Need for public funding
The Syracuse Law Review article stated that one of the lessons of the Massachusetts and other pilot projects was that “without dedicated funding, ample cash reserves or an extraordinary commitment to Supported Decision Making, it is very difficult for organizations to introduce, implement and help to support Supported Decision Making for a large number of individuals.”
There is no reference in S.3132, however, to a potential funding mechanism for SDM in Massachusetts. At the same time, the law review article states that providing public funding for SDM could introduce other problems into the model by turning it into a paid service.
Lack of a dispute resolution process
The Syracuse Law Review article recognizes that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a “Mediation Module designed as a two-day training for mediators.” While S.3132 requires EOHHS to establish an SDM training program in Massachusetts, it doesn’t specify that the program should include training in dispute resolution.
In our experience, many disputes in the care of persons with I/DD occur between family members or guardians, on one hand, and DDS and providers, on the other. In other words, DDS tends to support the providers’ positions in these matters, and family members and guardians are often left in an isolated position. What may be needed is an independent mediation process for disputes that places family members on a level playing field with the other parties when disputes arise.
It’s interesting that many of our major concerns about SDM are either discussed or implied in the Syracuse Law Review article, which was written by major SDM proponents. The Legislature has yet to come up with a bill that addresses these problems. SDM is a concept that needs to go back to the drawing board in the coming legislative session.
Mother says ‘no’ to DDS offer to drop effort to remove her as son’s co-guardian if she relinquishes all decision making authority
The Department of Developmental Services has offered to drop a two-year-long effort in probate court to remove Cindy Alemesis as co-guardian of her son Nick, whose life she saved in 2018.
But Cindy said that as part of a proposal made last week to settle the case, the Department stated that all medical and residential decision making authority concerning her son would be given to a new DDS-paid co-guardian.
In an interview, Cindy said she is encouraged that the Department is at least now open to her remaining as Nick’s co-guardian. However, she said, she will not accept an arrangement under which she would lose all medical and residential decision making authority in Nick’s care.
“I’m not handing that to them,” Cindy said. “I’ve fought for proper care for Nick and for his rights for his entire life.”
Nick and Cindy Alemesis
In 2018, Nick nearly died after staff in his group home in Dracut failed to take him for a scheduled ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.
A few hours later, Cindy was the first to notice that Nick was ill, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that Nick had developed sepsis from it.
Nick spent eight months at Mass. General Hospital, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.
Despite Cindy’s actions in 2018, DDS petitioned the Middlesex County Probate Court for unspecified reasons in October 2020 to remove Cindy as Nick’s co-guardian.
Co-guardianship could still be “suspended” for vague reasons
The new DDS proposal last week to drop the effort to remove Cindy’s co-guardianship also includes a condition that her co-guardianship could still be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.” The proposal doesn’t explain who would make that determination or how it would be made.
The proposal further states that the DDS co-guardian would have to agree to “the dissemination of protected health information or other personal information about (Nick) with third parties uninvolved with (his) medical care.”
That condition sounds like an effort to prevent Cindy from providing information about Nick’s care or services to an organization such as COFAR. Presumably, if an incident such as a leaking shunt were to happen again to Nick, Cindy would be prohibited, under DDS’s proposed agreement, from saying anything publicly about the matter unless the DDS co-guardian were to allow it.
Cindy alleges poor care and decision making by DDS and provider
Cindy maintained that since Nick’s 2018 hospitalization, DDS and Nick’s residential provider, Incompass Human Services, continued to make poor decisions in providing medical care and services to him. She noted that DDS recently sent Nick back to a day program operated by Incompass, causing Nick to act aggressively and apparently injure himself.
Cindy said that in recent months, Nick was repeatedly injured in the group home, and was afraid of the staff there. The same thing then happened in the day program, she said, because many of the staff were the same.
Following those repeated injuries, Nick was moved out of the group home in September, and is currently living in a respite facility in Saugus.
Cindy said Nick’s former DDS-paid co-guardan, who had imposed a temporary ban this summer on Cindy’s visits and phone contact with Nick, has resigned. But Cindy said she isn’t hopeful the situation will improve with the appointment of a new DDS co-guardian.
The new DDS co-guardianship proposal contains the following stipulations:
- Eva Toscano, who appears to be a program manager with the Department of Mental Health, would be appointed Nick’s new DDS-paid co-guardian. Toscano would have sole medical and residential decision making authority regarding Nick’s care.
- Cindy would be informed beforehand of Toscano’s residential decisions “when feasible,” and would be informed beforehand of Toscano’s medical decisions unless there was an emergency.
It would appear that under this stipulaton, Nick could be moved from one residence to another without Cindy being informed in advance. In all cases, he could be moved without her consent.
- Cindy would have to give 48 hours notice to residential staff prior to visiting her son.
- Cindy would be allowed phone calls with Nick, but only if it were determined to be “not detrimental to (Nick’s) behavior.”
The proposal doesn’t specify who would make that determination as to whether the phone calls were detrimental, but it would appear to be up to the DDS co-guardian. Cindy says Nick has acted out in the past because he objects to a rule cutting off his conversations after 10 minutes.
- Cindy could continue to take Nick to his church, which he has attended for the past 25 years, but the DDS co-guardian could cut off the visits if she decided they were “detrimental to (Nick’s) behavior or health.”
Cindy would not be allowed to make that determination whether attending church was detrimental to Nick.
Both Cindy and Nick’s pastor, the Reverend Keith Phemister, have stated that Nick has never caused problems in his church. Yet Cindy said Nick has been restricted for months by DDS and by providers from attending church services and functions, even online.
In an interview in April, Phemister sad Nick had not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”
- Cindy’s co-guardianship could be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.”
It seems to us that stipulating that a guardian can no longer make residential or medical decisions or give out medical information about their ward essentially amounts to removing their guardianship. At the very least, DDS’s proposed resolution of this case would ensure continuing disputes between Cindy and the DDS co-guardian. We fully understand why Cindy does not want to accept a proposal like that.
In November 2021, Dr. Zaheer Ahmed, Nick’s primary care physician, wrote a letter to the probate court, opposing DDS’s bid to remove Cindy as Nick’s co-guardian. In his letter, Ahmed maintained that Cindy had always acted in Nick’s best interest.
We agree with Dr. Ahmed, and believe Cindy should keep her medical and residential decision making authority.
DDS client, who had been denied all contact with his mother, suffers third head injury in group home
Nick Alemesis, who has a developmental disability, was sent to a hospital on Friday from his Dracut group home with the third head injury he has suffered in the residence since March, his mother Cindy said.
The latest injury occurred just before Cindy was due to visit Nick at the end of a 14-day ban imposed on her contact with him.
Incompass, the corporate provider that runs the group home, had charged that Cindy’s previous phone contact and visits with Nick were causing him to act aggressively and injure himself.
COFAR last week raised concerns about the ban, contending that neither Incompass nor the Department of Developmental Services (DDS) had made a sufficient case for restricting family contact with Nick.
We noted that this case appears similar to at least two others in which providers and DDS blamed family members for inciting aggressive behavior in DDS clients, and subsequently imposed punitive bans on family contact with those persons.
The 14-day ban on all family and social contact with Nick had been at least temporarily lifted at the end of last week. But Cindy was unable to visit Nick in the residence on Saturday, as had been agreed, because Nick had been taken to Lowell General Hospital. She said she was leaving this morning to visit Nick in the hospital.
DDS is, meanwhile, continuing an effort in probate court to remove Cindy as her son’s co-guardian for reasons that have never been made clear. In 2018, Cindy saved Nick’s life after staff in the group home had failed to take him to a scheduled ultrasound appointment, which would have shown his brain shunt was leaking spinal fluid.
In a text message to Cindy, dated Saturday, the Incompass assistant program manager wrote that Nick had been sent to the emergency room at Lowell General for self-injurious behavior and threatening to kill himself. Cindy maintains that Nick has frequently said he would kill himself if he was forced to remain in the group home. She said Nick is afraid to be in the residence.
Cindy is one of two co-guardians of Nick. The other co-guardian, Donna Nolan, is paid by the Department of Developmental Services (DDS) to serve in that role. Nolan is not related to Nick.
Nolan, along with Jean Phelps, the CEO of Incompass, signed off on a provider document on August 17 that imposed the 14-day ban on all family and social contact with Nick.
COFAR has joined Cindy in urging DDS not to send Nick back to the Dracut group home. Cindy said she is concerned Nick has been abused in the residence.
We suggested last week that Nick be placed at the Hogan Regional Center where we think staff are better trained to care for clients who exhibit aggressive behaviors.
Even if Nick’s injuries have been self-inflicted in the group home, it appears to be clear that Cindy’s contact with Nick is not the primary cause of his aggressive behaviors.
Neither DDS Commissioner Jane Ryder nor Jean Phelps, the Incompass CEO, have responded to an August 25 email from COFAR raising concerns about the ban on contact.
Cindy said Nick was previously injured in the group home on March 16, and was injured again two to three weeks ago. Cindy reported that March 16 head injury to the Disabled Persons Protection Commission (DPPC) because the injury had not been reported by the staff.
DDS, which conducted a limited Administrative Review of the March incident, concluded that there wasn’t sufficient evidence to show that Nick’s injury was caused by staff of the group home, and that the injury had most likely been self-inflicted.
UPDATE: Ban on mother’s contact with son at least temporarily lifted
[UPDATE TO YESTERDAY’S POST (BELOW): Cindy Alemesis was informed yesterday (August 30) that the ban on family contact with her intellectually disabled son Nick would be lifted as of today, at the end of a 14-day period specified by Nick’s group home provider and DDS co-guardian (see post below).
However, Cindy also said that in a phone call yesterday, the Incompass group home manager told her the ban on all contact could be re-imposed if Nick continues to display aggressive behaviors. Cindy believes Nick has been acting out because he may have been abused in the group home, and that he wants to leave it.
Cindy said she asked the group home manager whether the ban on family contact was actually a form of punishment of Nick. “I said to him, ‘so, as punishment, Nick loses his mom?’” Cindy said. “And he said, ‘well Nick has to learn.’”
In a text message to Cindy yesterday, the Incompass director of residential services, said Cindy will be allowed to visit Nick at the group home this Saturday. She will also be allowed one 10-minute phone call a day with Nick. But the Incompass director stated that the phone call would be terminated by staff, “if Nick begins displaying unsafe/inappropriate behaviors during the call.”]
Cindy Alemesis, who saved her intellectually disabled son Nick’s life in 2018, was subject to a ban on all contact with him for the past two weeks because Nick allegedly began behaving aggressively after her visits and phone calls.
The ban was imposed on August 17 by Incompass Human Services, a Department of Developmental Services (DDS) group home provider, and by a co-guardian of Nick, who is paid by DDS. The Department is, meanwhile, continuing an effort in probate court to remove Cindy as her son’s other co-guardian for reasons that have never been made clear.
Nick Alemesis and his mother Cindy
Cindy believes Nick acts aggressively because he doesn’t want to remain in his group home in Dracut, and may have been abused there. Cindy has reported at least two incidents of injury suffered by Nick in the Incompass residence.
Both Incompass staff and DDS have failed to report those injuries to the Disabled Persons Protection Commission (DPPC), as required by law.
Neither DDS Commissioner Jane Ryder nor Jean Phelps, the Incompass CEO, have responded to an email last week from COFAR raising concerns about the ban on contact and the alleged failure to report the injuries.
Similar to past bans on contact
The ban on family contact with Nick is similar to bans imposed in at least two other cases, which led to emotional pain and suffering for DDS clients and their families (see here and here).
As we noted in our email to Ryder and Phelps, cutting off family and social contact with DDS clients is an extreme measure that runs counter to their well being and rights under DDS regulations to support human dignity. Among those fundamental rights is the right to visit and be visited (115 CMR 5.04).
In Nick’s case, the ban on contact also follows from previous restrictions imposed by Donna Nolan, the DDS co-guardian, on Nick’s visits to his church and community.
Reason for latest ban on contact disputed
Records sent to us by Cindy show that Incompass has charged that Nick has engaged in “unsafe and self-injurious behaviors” after visits or phone calls from her and other family members.
In an Incompass document titled, “Human Rights Request for Approval of Restriction,” both Phelps and Nolan signed their approval on August 17 of a 14-day ban on all family communication and visitation with Nick as well as “access to social situations” for Nick. The document, which concerned both family visits to the group home and visits by Nick to Cindy’s home, left open the possibility of extending the ban indefinitely.
The document stated that after speaking with his mother by phone on August 9, Nick threw a phone and later a stone from his bedroom at staff, and refused to take his medications.The document alleged that Nick was taken that day to Lowell General Hospital where he exhibited similar aggressive behaviors after Cindy called him and then visited him there.
The Incompass restriction document, however, did not identify any statements or actions by Cindy or any family members that might have incited Nck to act out. Cindy contends Nick acts out because he does not want to live in the group home, or return to it when he is taken elsewhere.
We would echo Cindy’s concern that conditions in the residence itself may be causing his behaviors and injuries. We think the solution to the problem is to change his residential setting.
Text messages and statements from Nick indicate that he may be afraid of being hurt or injured by staff in the group home. Cindy said Nick has told her that staff have “hurt his head.” Cindy also forwarded a July 28 text message from Caitlyn Alekshun of Bridgewell Counseling Services indicating that there is uncertainty as to why Nick has been agitated and engaging in possibly self-injurious behaviors.
As discussed below, an earlier message from Alekshun to Nick’s service coordinator indicated that the group home staff were not providing timely information to her about the possible cause or causes of Nick’s behavior.
We haven’t seen any records that indicate that either Cindy or other family members have done or said anything to incite Nick to act out or injure himself. In a July 21 email, Nick’s DDS service coordinator wrote that he had “observed Nick become dysregulated. Staff report that it is like this every day.” That would appear to rule out Cindy as the sole, or even main cause of Nick’s behaviors.
However, the August 17 restriction document, signed by Phelps and Nolan, concluded that:
Due to these recent events and to Nicholas’ increasingly unsafe behavioral response to interactions with Cindy, both in person and by phone, it is proposed that Nicholas does not have any communication or contact with family members (including, but not limited to Cindy…) for a period of 14 days. This period of time will allow the program to work more effectively with Nicholas to keep him safe, unencumbered by external stimuli that may significantly impact his ability to regulate his emotions and subsequent behavior.
At the end of this initial 14-day period of no-family contact, the treatment team will revisit this restriction and assess whether continuing the practice is warranted for an additional 14-day period(s).
Staff not providing information to clinician
The restriction document did not make it clear how or why contact with Cindy or other family members would incite Nick to engage in aggressive behaviors. We think that without establishing a clear cause of those behaviors, Incompass has not made a case for restricting family contact.
Nick (right) and his pastor, the Rev. Keith Phemister, and Keith’s wife Gloria. Nick has been restricted at least twice this year from visiting his church.
In fact, records indicate that the group home staff have been uncooperative with at least one clinician seeking to determine the cause of Nick’s aggressive outbursts.
In response to the service coordinator’s July 21 email, Alekshun of Bridgewell wrote that she had requested “recent behavioral data from the residence a few times, but haven’t received anything more recent than May.” Such data, she wrote, might “help justify the need for an inpatient placement” for Nick at a hospital setting.
Failure to report injuries
We are also concerned that DDS and provider staff have failed to report potentially serious injuries that Nick suffered in the group home, as required by law. In the most recent case, Cindy said she was forced to report a head injury that Nick suffered on March 16 to the DPPC because the injury had not been reported by the staff.
Both the DDS Decision Letter and subsequent Action Plan resulting from the March 16 incident stated that the alleged abuser didn’t report the injury.
Cindy said the incident resulted in bleeding from Nick’s ear, which would classify the injury as a serious physical injury under DPPC regulations. Nick received emergency room treatment for the injury.
DDS declines full investigation
After Cindy reported Nick’s March 16 head injury, DDS apparently conducted a limited Administrative Review of the incident. Administrative Reviews do not meet DPPC standards for full investigations. The DDS Decision Letter, issued after the review was completed, acknowledged that a “regulatory investigation” had not been conducted.
Given, in particular, that the bleeding Nick suffered from his ear would classify the injury as serious under DPPC regulations, it would appear that either DPPC or DDS should have conducted a full investigation of the matter, and not an Administrative Review. The DDS Decision Letter did not explain why a full “regulatory investigation” was not done.
The DDS Decision Letter concluded that as a result of the limited review, there was insufficient evidence to conclude that Nick had been abused by a staff member, and that Nick had “acknowledged” his injury had been self-inflicted. However, the Decision Letter did not disclose who was interviewed by the investigator. Cindy said she was not interviewed, and it is not clear whether even Nick was interviewed, based on accounts in the Decision Letter and subsequent DDS Action Plan.
The Action Plan, in fact, stated that, “It was reported by the provider that (Nick) exhibited self-injurious behaviors (SIB) causing injury to himself and was restrained.” (my emphasis). This statement appears to imply that the DDS investigator may have relied on an account from the provider, possibly even from the alleged abuser, in concluding that Nick had injured himself.
Both the Decision Letter and Action Plan said only that “during the course of the investigation witness(es) were interviewed and relevant documents were reviewed.” There was no specificity as to which documents were reviewed, or which witness or witnesses were interviewed. In fact, it isn’t clear, based on the word “witness(es),” whether more than one person was actually interviewed.
DPPC regulations (118 CMR 5.02) require that in full investigations, the investigator interview the reporter of the injury — in this case, Cindy. Cindy said that never happened.
The regulations also require that the investigator provide an assessment of the “immediate protective services needs” of the alleged victim to prevent the risk of further harm. There was no indication in the Decision Letter or Action Plan that such an assessment was done in this case.
The Action Plan recommended only that Nick’s residential and day provider staff “create a communication log that documents such incidents so everyone is informed.” There was no recommendation in the Action Plan relating to failure of the provider or DDS to report the injury to DPPC.
Similarly, DDS and DPPC declined to undertake an investigation of an incident in 2018 in which Nick contracted sepsis and spent eight months in a hospital because of the apparent negligence of staff in his group home. That incident was also not reported by the provider staff or by DDS to DPPC.
No response from DDS or Incompass
As noted, on August 25, I sent an email to both DDS Commissioner Ryder and to Phelps, the Incompass CEO, noting our concerns about the restriction on family contact and about reports of poor conditions and staff treatment of Nick that led him to state and text to his mother that he did not want to remain there. As such, I wrote, we are concerned the residence is potentially unsafe for Nick. To date, I haven’t received a response to my email.
We urge DDS and Incompass to reconsider the restrictions placed on family contact with Nick. We also urge DDS to conduct a full investigation of the injury that occurred to Nick on March 16, and to investigate the care and conditions in the residence.
Finally, we urge DDS to work with Cindy to identify another residential setting for Nick or a placement in an Intermediate Care Facility such as the Hogan Regional Center.
DDS client removed against her will from shared-living home in alleged retaliation for reporting abuse
It was on a Monday in May that Mercy Mezzanotti, a client of the Department of Developmental Services (DDS), was taken against her will from the home of Karen Faiola, with whom Mercy had been living for four years.
The person who came to take her worked for Venture Community Services, a nonprofit contractor to DDS. Up to that time, Venture had been paying Karen to provide shared-living services in her home to Mercy.
“I told them (the Venture employee and later other managers of the corporation) this is against my human rights,” Mercy said in a phone interview. “I’m my own guardian. I’m not going along with this. But they wouldn’t tell me anything. This should be under investigation.”
Both Mercy and Karen contend that Venture was retaliating against them because they had complained to managers of the organization in April that two of its employees had been verbally abusive toward Mercy.
Karen Faiola (left) and Mercy Mezzanotti
Mercy, 47, has a mild intellectual disability. As she put it, she has “trouble processing certain things.” But while she attended special needs classes in her school district as a child, she took mainstream classes in English and consistently made the honor roll. “I constantly studied,” she said. “I loved school.”
As her own guardian, Mercy has full legal authority to decide where to live, as well as to make other major life decisions. In our view, Venture’s alleged action to remove her from her home against her will was arbitrary if not unlawful.
Mercy and Karen said that the Venture employee drove Mercy on May 23 from Karen’s home in Sutton to the home of a family in Worcester that Mercy didn’t know. She said none of the people in the home spoke English. The next two days and nights were filled with anxiety and emotional trauma for her, Mercy said.
“I thought I would never see my home and Karen and my two cats that I love again,” she said.
Karen said that she conferred with Mercy’s private therapist after getting calls from Mercy saying she wanted to come home. She said the therapist maintained that Mercy had the right to make that decision; so Karen picked Mercy up on May 25, and drove her back to her home. She said Mercy told her that she no longer wanted to have anything to do with Venture or its employees.
Venture stops payments
On May 23, the same day that Mercy was removed from Karen’s home, Venture notified Karen that they were terminating her shared-living contract to care for Mercy in her home. Karen said DDS officials have subsequently refused to act on her request that her contract be referred to another shared-living manager. She said the organization she suggested to DDS is located near her house and is one that she has experience with.
As a result of the contract termination, Karen said, she has not been paid since May for caring for Mercy in her home. She said that she nevertheless intends to keep Mercy there as long as Mercy wants. “I’m not going to allow anyone to take Mercy to any place she doesn’t want to be,” Karen said.
Under Mercy’s shared living arrangement, DDS had paid Venture to contract directly with Karen for providing residential services to Mercy. Karen said Venture paid her $2,882 a month under the contract.
“Karen has helpd me grow and see my potential and find a voice,” Mercy said. “I feel confident speaking to people.” She said Karen regularly takes her to doctors’ appointments, for pedicures, and to visit her father and a friend of hers.
Mercy added that she and Karen have gone hiking together and go shopping together. She said Karen makes her meals and helps here take care of her cats, while she takes the trash out. “I love Karen,” she said. “She’s such a dream, such a great person.”
No written reason given in shared-living contract termination notice
Karen said a Venture employee alleged in a Zoom meeting with her and other provider personnel on May 19 that Mercy was going to be removed from her home because she had neglected to take Mercy to doctors’ appointments for the previous three years. Karen said this charge was untrue; and she provided COFAR with a doctor’s summary indicating that Mercy’s doctors’ visits and medications were up to date as of March of this year.
In a May 23 letter to Karen, Dorothy Cote, executive vice president and CFO of Venture, gave notice of the termination of Karen’s shared-living contract, but did not include a reason in the letter for the termination.
Cote’s termination letter cited a provision of the contract, which stated that Venture “may terminate (Mercy’s) placement upon due cause, a suspicion of due cause, abuse or neglect.” The letter also said Mercy could be removed from the home “pending the outcome of an investigation.” The letter, however, did not allege due cause, abuse or neglect against Karen. Cote’s letter also did not indicate that an investigation of any kind was pending.
If Venture officials did believe Karen had been neglectful in her role as a caregiver, there appears to be no indication that anyone reported an allegation against Karen of omission of care to the Disabled Persons Protection Commission (DPPC), as they would have been required to do.
Retaliation alleged for reporting abuse
Both Mercy and Karen contend that the sudden removal of Mercy from Karen’s home and termination of Karen’s contract were acts of retaliation by Venture against the two of them.
Karen said Mercy had been living with her for the past four years without incident. But she said that a number of months ago, there were changes in management at Venture, and problems began to develop with the new personnel. One of those new employees, she said, was assigned as a job coach to Mercy.
Mercy maintained that the job coach often harassed her at her job at a Papa Gino’s restaurant by mocking her work ethic. In one instance, in April, she said, the job coach suggested to the Papa Gino’s manager that she should fire Mercy. In another instance, she said, the job coach threatened not to drive Mercy home from work.
Karen said that in addition, a Venture service coordinator assigned to Mercy further abused her emotionally by threatening to remove her from Karen’s home.
Karen said she reported the incidents to a supervisor at Venture, and that led to the removal of Mercy from her home.
Therapist corroborates claims of emotional abuse
Grishelda Hogan, a licensed clinical social worker, has been Mercy’s therapist since 2019. In a July 21 email to Mercy and Karen, Hogan wrote that Mercy had “expressed consistently that she was happy in her home (with Karen)…It was clear in therapy,” Hogan stated, “that (Mercy) was making great strides in her life and I was able to see her self-esteem and self-worth develop as she finally felt seen and heard.“
Hogan stated that Mercy “had been reporting ongoing concerns with her Venture job coach. She reported feeling trapped and unsupported…” Hogan added that Mercy felt she had been lied to, and that the job coach had violated her privacy by talking to another individual on the phone about Mercy’s personal information. She said she passed her concerns on to DDS.
Hogan stated that she contacted Mercy’s DDS service coordinator after she learned that Mercy had been “abruptly moved from her home without warning or discussion despite being her own guardian.
“I shared that Mercy was reporting intense anxiety, difficulty sleeping, feeling sad and defeated, missing her home and her cat and her shared living monitor (Karen),” Hogan stated in her email to Karen and Mercy. “She was reaching out to me consistently asking for help and advocacy to get home.”
Hogan said the service coordinator told her she didn’t know the reason Mercy had been removed from her and Karen’s home. Hogan said Mercy had told her neither Venture nor DDS had ever asked her about concerns in the home prior to the move.
In her email, Hogan wrote that she personally reported to the DPPC that Mercy had been improperly moved from Karen’s home. “Mercy has consistently stated she believes her rights were violated,” Hogan wrote, “and DDS should be held accountable. And she fully believes the move was retaliation due to herself and her shared living monitor (Karen) speaking up.”
DPPC decides against full investigations of emotional abuse allegations
Karen said she also reported three allegations of emotional abuse against Mercy to the DPPC in May, just before Mercy was removed from her home. Those allegations include instances involving the job coach and the service coordinator, and the then pending removal of Mercy from her home.
Subsequent letters addressed to Mercy from DDS Area Director Denise Haley, dated May 27, indicate that Karen’s allegations were referred to DDS for an Administrative Review.
According to DDS regulations, an Administrative Review is undertaken when the DPPC “screens out” abuse and other allegations for full investigations by either the DPPC itself or DDS (115 CMR 9.11). It’s not clear to us why DPPC would have screened out Karen’s and Hogan’s allegations, as both Karen and Mercy stated that Mercy had suffered emotional injury as a result of the alleged abuse.
No response to COFAR query sent to DDS area director and Venture CFO
On July 19, I sent an email query to DDS Area Director Haley and to Cote, the Venture executive vice president and CFO, raising our concerns about the removal of Mercy from Karen’s home and the termination of Karen’s shared-living contract, apparently without written cause. I cc’d Anthony Keane, the DDS Worcester regional director.
In the email, I discussed Karen’s and Mercy’s allegations of retaliation by Venture against them for having alleged abuse by Venture employees. I asked for any comment Cote or Haley might have. To date, I have not received a response from any of those persons to my email.
DDS removes client’s eligibility for Medicaid funding for shared living services
In my email to Haley, Cote, and Keane, I said we were also seeking an explanation for the apparent disqualification by DDS of Mercy from eligibility for Medicaid Intensive Support Waiver Services. A July 6 legal notice from DDS stated that Mercy was being denied eligibility for the Intensive Support Waiver. No reason was given for that denial in the notice, other than an unsupported and unexplained statement that there were “no waiver services” available.
We agree with Mercy that a full investigation is warranted of Venture’s apparently unlawful removal of her from her home, and of the other alleged instances of emotional abuse against her. We also would urge DDS to immediately refer Karen to another shared-living contracting agency, and that she be reimbursed retroactively for having provided shared-living services to Mercy since May.
This case appears to fit a pattern in which family members or other individuals who report abuse or poor care of DDS clients are dismissed or find themselves subject to retaliation by corporate providers or by the Department itself. We are hoping that in continuing to shine a light on these cases that we can help one day break this pattern.
Mother says she is being ‘railroaded’ out of her guardianship by unfair court report
The mother of an intellectually disabled man says she is being unfairly accused in probate court of having a conflict of interest in caring for her son, and that the conflict charge is being used to limit and possibly eliminate her co-guardianship rights.
Valerie Loveland said that in an April 19 Barnstable County Probate Court hearing on Zoom, an investigative attorney appointed by the judge presented a report concluding that Valerie had a conflict because she both sells natural medicinal products to customers and provides those products to her son.
Valerie maintains, however, that she derives no material benefit from the arrangement involving her son. She said her son buys the products directly from the company, Young Living Brand. She said his primary medical care provider approves all of his alternative medicines in accordance with his group home’s policy.
Valerie’s 24-year-old son is a resident of a group home on Cape Cod run by the May Institute, a corporate provider to the Department of Developmental Services (DDS). Valerie has asked that her son’s name be kept private.
We have previously reported that Valerie has been fighting both a motion to limit her co-guardianship of her son and a move to evict her from her subsidized apartment due to an alleged technical violation of her lease.
The motion to limit Valerie’s co-guardianship was filed in March by John Cartwright, an attorney who is paid by DDS to serve as Valerie’s son’s other co-guardian. Cartwright’s motion seeks to remove Valerie’s authority to make medical decisions for her son and to transfer her authority as representative payee for her son’s Social Security funds to the May Institute.
(Valerie said yesterday that her housing situation was being resolved favorably for her after discussions with housing officials.)
Health clinic program director approves natural medicines
In an April 27 letter, Gretchen Eckel, a certified physician assistant and a program medical director at Outer Cape Health Services, said Valerie’s son’s natural medicines have been subject to “shared decision making to permit these treatment plans.”
Eckel said she has seen “no harm or risks” to Valerie’s son caused by the use of the alternative medicines. She described Valerie as “a tremendous advocate for (Valerie’s son’s) needs, and I believe she has always had his best interests in mind.”
Valerie says she was not interviewed by guardian ad litem
Valerie contends she is being “railroaded” by Cartwright’s motion and by the report alleging that she has a conflict of interest in providing the natural medicines to her son. The report was writtten by Christopher Lebherz, who was appointed by the court in the case as a guardian ad litem (GAL). In Massachusetts, a GAL is an independent investigative official, often an attorney, who assists the court in guardianship cases.
Valerie said she was neither interviewed by Lebherz for his report, nor was she provided with a copy of the report either before the hearing or since. She was allowed by the judge in the case, Susan Sard Tierney, only to view the report and take notes on it in the courthouse, following the hearing. She was not allowed to make a copy of it.
The GAL’s report has been made available, however, to both Cartwright and to Carol Coyne, a DDS attorney in the case, according to an April 19 order issued by Tierney.
Valerie said the GAL’s report indicates support for the motion by Cartwright to limit her co-guardianship. Due to the GAL report’s confidential nature, COFAR has not been able to obtain a copy of it.
Valerie termed “caring and concerned mother”
In an email in response to a query I sent, Lebherz said he was “concerned about a conflict of interest or the appearance of a conflict of interest (on Valerie’s part) regarding rep payee.”
Lebherz also said he “spoke with Valerie and all other interested parties” in the case. He said he “asked her (Valerie) and others to summarize all of their positions and send it all along to me.”
Lebherz also said he did not recommend that Valerie lose her medical decision making authority. He added that he “reviewed the case history and all filings,” and that he visited the May institute.
Lebherz declined to respond to my follow-up question whether he had found or presented any evidence in his report that Valerie had derived any material financial benefit from providing natural medicines to her son.
He also declined to respond to my follow-up question whether “speaking” with Valerie and asking her to “summarize her positions” constituted an interview, or whether he had specifically asked her about the alleged conflict of interest.
Lebherz, nevertheless, said, “All parties agree Valerie is a caring concerned mother. These are difficult issues and situations and we all try to do our best.”
While Lebherz said he didn’t recommend that Valerie lose her medical decision making authority, Valerie said that Lebherz stated in his report that he agreed with Cartwright’s motion that her medical decision making be limited to consenting to medical treatments directed by others.
“I raised (her son) completely alone,” Valerie said. “I worked where I could, managed his money and medical appointments, all of it for 18 years, below the poverty line. Now they’re trying to take everything away. What have I done? I’ve never heard of anyone doing everything right and being treated so badly.”
Guardian ad litem standards require an interview and detailed fact finding
Under Massachusetts standards for guardians ad litem, the GAL must “provide each party with a separate interview so that each party may speak with candor.” (Section 4.4)
The GAL must also “conduct the investigation in a fair and balanced manner”(6), and the GAL’s report “should provide accurate, detailed and balanced information about the parties and their children.”(8)
In addition, the GAL report should include “all relevant facts collected from all sources, including facts that are consistent and inconsistent with other reported facts.”(8.2). Further, the report must “set forth the connection between the facts and the conclusions or recommendations.”(8.5)
If Lebherz’s report concluded that Valerie has a conflict of interest, the GAL standards would appear to require that the report include relevant facts that support that conclusion, such as the extent of any financial benefit that Valerie received as a result of the alleged conflict.
No material benefit from providing natural medicines to son
Valerie said the GAL’s report alleged that she has a conflict of interest because she has provided natural medicines and other products to her son, and that she has a business in which she sells those products. She said that appears to be the primary reason that Lebherz recommended that she be removed as rep payee and that all medical decisions be made solely by Cartwright.
In fact, Valerie said, she has not derived a material financial benefit from her son’s use of the medicines. She said her son purchases the products directly from the company with his own money. She and her son both have accounts with the company and receive points for their purchases.
Valerie said she receives an average of $5 a month in “commissions” from her son’s purchases. “I set it up so that when I died whoever handles his account could continue ordering his supplies for him,” she said.
It doesn’t appear that the fact that Valerie sells natural medicines and has established an account for her son for those products would be a conflict unless she received a material financial benefit from that. As a user and seller of natural medicines, she might naturally be inclined to encourage her son to use them.
Valerie says Cartwright, the DDS co-guardian, has long opposed her efforts to provide natural medicines and essential oils to her son.
In her April 27 letter in support of Valerie, Eckel, the certified physician assistant, said Valerie’s son has been her primary care patient since 2014, and that she last examined him on April 27.
Eckel said Valerie raised her son since birth, and raised him independently since the age of three when his biological father left them. She said that since Valerie was appointed as her son’s co-guardian in 2016, Valerie has attended most of his medical visits “with the exception of a very few visits” when he was attended by staff of the May Institute.
Eckel added that “Valerie has opted for natural treatment options when available and safe for (Valerie’s son’s) ailments over the years, and we have used shared decision making to permit these treatment plans as I have seen no harm or risks to these strategies.”
Valerie said natural or alternative medicines are considered complementary to, and not a replacement for, western or modern medicines. She said the natural supplements and treatments provided to her son are in addition to his modern medications, and that he is fully vaccinated for COVID and for childhood diseases.
“I had an informed conversation with Gretchen (Eckel) regarding the vaccinations and their effectiveness, side effects, etc., before giving consent to the May to proceed with their vaccination clinics,” she said. She added that “May staff also reports he’s doing great since these changes (use of natural medicines) have been made.”
This is one of several cases on which we’ve reported, which raise questions about the fairness of the DDS and probate court systems, particularly when it comes to family members who lack financial resources or attorneys to represent them.
Our justice system isn’t supposed to function differently for people who lack those resources; but we’ve seen a number of instances (see here and here) in which that has unfortunately been the case.
Mother protests state’s restrictions on son’s contact with church, and questions safety in his group home
Note to Readers:
Last week, we reported here about Valerie Loveland’s fight against efforts to limit her co-guardianship of her son and evict her from her apartment.
This week, we are updating the case of Cindy Alemesis, the mother of another client of the Department of Developmental Services (DDS). As we have previously reported, DDS is continuing an effort to remove Cindy as her son’s co-guardian even though Cindy acted to save her son’s life in 2018.
A hearing in Middlesex Probate Court on DDS’s guardianship removal petition against Cindy has been scheduled for May 5.
Cindy says that in addition to trying to remove her as her son’s co-guardian, the state is imposing unfair and punitive restrictions on her son’s contact with the community and with his church. She says the church, which she also attends, has been a “lifeline” for her 30-year-old son Nick.
Cindy also said she is concerned about Nick’s safety in a group home in Dracut in which he suffered an apparent head injury last month. The group home is operated by Incompass, Inc., a corporate provider funded by the state.
In seeking to remove Cindy as co-guardian of Nick, DDS appears to be trying to give sole guardianship to the other co-guardian who is paid by the Department. Cindy contends that co-guardian, who has other wards, has rarely visited Nick.
Nick and Cindy Alemesis
In 2018, Cindy appears to have saved her son’s life after she discovered he was ill following a church service. She insisted he be taken to a hospital, where doctors discovered that a shunt in his brain had been leaking fluid into his stomach. Nick spent 10 months in the hospital with sepsis, and underwent numerous brain operations and other procedures as a result.
The 2018 incident was not investigated by the Disabled Persons Protection Commission (DPPC) even though Zaheer Ahmed, Nick’s doctor, charged that staff in the group home failed to bring Nick to a scheduled ultrasound appointment. According to the doctor, that ultrasound would have revealed the fluid leaking from the shunt.
Dr. Ahmed recently wrote a letter to the probate court, supporting Cindy and opposing DDS’s attempt to remove her as Nick’s co-guardian.
Recently injured in group home
Cindy contends that care and safety problems have persisted in Nick’s group home, and said she thinks Nick may have been physically abused in the residence on or about March 18.
Cindy has been out of the country since March 14 on a church-sponsored missionary trip to Nigeria. While there, she received a call from her mother that Nick was bleeding from his ears in his group home, and had been taken by ambulance to a hospital. In addition, she said, his face was bruised.
Cindy said no one from the group home has responded to her questions about the incident, but that staff told her mother Nick’s injury was self-inflicted by banging his head against a wall.
Cindy said, however, that she has never witnessed Nick injure himself. She also said Nick is afraid of the group home, and has told her people are hurting him there.
No incident report apparently filed with DPPC
On Monday (April 4), Cindy called the DPPC to ask if a report was ever filed about Nick’s injury and hospitalization in March. She said the DPPC informed her on Wednesday that no report had been filed.
Under state law, the group home staff must report any case of suspected abuse or neglect to the DPPC.
Cindy said she called the DPPC hotline number this morning (April 7) to file a report herself with the agency about the March incident, but was told the wait time was 50 minutes due to a high volume of calls. She said she left a voicemail message asking for a callback, and planned to try to call again.
She was finally able to call in the report later on April 7.
According to a DPPC guidance document, even self-injurious incidents and unexpected hospital visits should be reported because they may indicate negligence of a caregiver or provider.
DDS Co-guardian writes letter restricting Nick’s visits to church; cites safety concerns
Rather than investigating or addressing conditions or care in Nick’s group home, Cindy said, DDS officials have moved instead to restrict her son’s contact with his church and community.
Following Nick’s injury in March, the DDS co-guardian wrote a letter to Cindy and the group home staff, which imposed a restriction on Nick’s attendance at his church in Londonderry in New Hampshire. The March 24 letter stated that,“Nick can go to church only if Cindy can take him and she provides supervision.”
The co-guardian’s letter also imposed restrictions on Nick’s contact with the community. The letter stated that, “Nick cannot go to church or access the community with (his) Uncle Danny or any friends from church due to issues of liability. They can visit him at the group home only. Incompass will find a local Baptist church where staff can supervise him.”
Given that Cindy has been out of the country, she said Nick has been unable for the past month to visit his church. She said she doesn’t understand why DDS would react to an injury to Nick that occurred in his group home by restricting his contact with his church and with the community.
For years, Cindy said, Nick has been taken to church services and functions from his group home either by family members or friends. Cindy herself doesn’t drive, and depends on those people for transportation to the church as well.
It is not clear what authority the DDS co-guardian has to restrict Nick’s church attendance. However, Nick’s DDS service coordinator texted Cindy on March 29, stating that the co-guardian’s “guidance” was “fair.”
Cindy said going to church is Nick’s principal social activity, and that his life revolves around church functions. He has been attending the church since he was five years old.
However, the DDS co-guardian’s letter stated that, “Nick presents a risk to the community, and is a risk to reoffend.” There was no explanation in the letter as to what type of risk Nick presents or what offenses Nick may have committed there.
In his March 29 text to Cindy, Nick’s DDS service coordinator stated that, “Nick is having an alarming increase in temper tantrums. He is exhibiting self-injurious behavior. He has a forensic history. There are concerns of him reoffending. There are issues of liability. He isn’t safe to go out into the community unsupervised. Period.”
Two incidents in 2014
Cindy said the references to Nick having a forensic history are apparently to two incidents that occurred in 2014. In one, she said, Nick “kissed a girl’s hand and wanted to walk her home. He knew her from school.” That same year, she said, “he urinated outside.”
Cindy said that in the wake of those incidents, Nick was found by the probate court to be incompetent, and Cindy agreed to become his co-guardian. He was never charged criminally. Cindy said Nick was first placed at that time in a group home. She said there have been no similar incidents since 2014.
Cindy said Nick has never been violent with others in the community, and has never had a forensic history, which implies criminal activity.
Cindy says no basis for restrictions on church and communty contact
In her March 24 letter, the DDS co-guardian stated that Nick “can go to lunch with mother or walks with father if conditions met.” Among those conditions are that, “There must be no temper tantrums, property damage, or incdents of self injurious behavior for 48 hours prior to event.” The co-guardian’s letter added, “Behaviors documented after interactions with family.”
Cindy maintained, however, that Nick has never had any problems with safety or injury in his church or in the community.
Pastor confirms he never saw Nick cause problems in church
The pastor of Nick’s and Cindy’s church, the Reverend Keith Phemister, confirmed Cindy’s assertion that Nick has never caused problems in his church.
“We’ve never had a problem with Nick,” Phemister said. “He’s never hit or hurt anyone here.” He said that a few months ago, Nick expressed anxiety at having to return to the group home. “He doesn’t like it there for some reason,” he said.
Phemister confirmed that as a result of the DDS co-guardan’s letter, Nick has not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”
On March 29, Cindy texted the service coordinator, saying, “ When I die, Nick will have no more church. … Why. Why take it away.”
The service coordinator texted back, saying, “Nick’s family and church friends can visit him anytime at the group home. I will not respond to anymore emails at this time.”
DDS not providing supported resasoning for its actions
In our view, DDS is attempting to remove Cindy as her son’s guardian, apparently without regard for the fact that she is the one person who has clearly acted in his interest in saving his life and advocating for his safety.
Nick does not appear to be safe in his group home and has expressed a fear about being there. He was injured there last month. Yet, the response by DDS officials has been to restrict his contact with his family members, his friends and his church, and the community as a whole.
Nick does not appear to pose any risk of harm to himself or others in his church or the community.
The DDS response does not appear to make sense. That’s may explain why the service coordinator doesn’t want to respond to further email inquries from Cindy.
Mother fighting both removal of her guardianship rights and eviction
The mother of a man with a developmental disability has found herself having to fight both an effort to limit her co-guardianship of her son and a move to evict her from her subsidized apartment.
For Valerie Loveland, whom we have written about before, this two-front battle is the latest chapter in her years-long struggle with a system that seems to be designed to override rather than uphold her and her son’s rights.
Valerie is co-guardian of her 24-year-old son who is non-verbal and needs 24-hour care. He has been a resident for the past six years in three separate group homes on Cape Cod run by the May Institute, a corporate provider funded by the Department of Developmental Services (DDS).
Valerie has asked that her son’s name not be published.
A motion to limit Valerie’s guardianship rights was filed in early March in Barnstable County Probate Court by her son’s other co-guardian – an attorney who is employed by DDS.
Valerie Loveland
This is one of a number of cases we have reported on in which DDS has sought, or is seeking, to limit guardianship rights of family members or remove their guardianships altogether. (See here, here, here, and here.)
Valerie said DDS had first attempted to remove her as her son’s guardian when he turned 18, but then agreed to the co-guardianship arrangement. The other co-guardian has other wards as well.
Valerie contends that the DDS co-guardian virtually always sides with the May Institute, which she says has failed to provide adequate care for her son. The co-guardian also opposes Valerie’s use of prescribed natural medicines for her son’s care.
Emails show the DDS co-guardian also objected last year when Valerie temporarily removed her son from a previous May Institute residence after he was allegedly sexually assaulted there. More recently, the co-guardian opposed a decision by Valerie to remove her son temporarily from his current residence after she said she was informed he had suffered a head injury there.
Eviction notice based on apparent technicality
The eviction proceedings were launched against Valerie in December by her landlord, Lake Street Limited Partnership, and its managing agent, The Community Builders, Inc., a nonprofit corporation. The eviction notice is based on what appears to be a technical violation of the lease for her Chatham apartment.
Valerie said she has never failed to pay her rent on time. The issue raised by the landlord in the eviction notice is that Valerie is a full-time college student. The notice states that as a full-time student, Valerie is in violation of a provision of her lease stating, among other things, that a household with a full-time student must also include a single parent with children.
Valerie said that after receiving the eviction notice, she emailed the attorney for the landlord, asking whether her son’s weekly visits home satisfied the lease provision. She said she received no response to her query.
A DDS official even wrote to a housing official involved in the management of Valerie’s apartment complex on March 2, confirming that Valerie’s son needs to have a room maintained for him in the apartment. That message from DDS, however, apparently has had no effect on the decision to evict her.
Both issues are coming to a head this month. A Southeast Housing Court mediation session has been scheduled for April 11 in the eviction case; and a hearing on the motion to limit Valerie’s guardianship rights has been scheduled for April 19 in Barnstable County Probate Court.
Son’s care has taken a financial toll
Valerie estimates that it cost her thousands of dollars in lost income while she cared her son at home last year and drove him each day to his day program in Mashpee.
She works in grocery delivery and part-time in aromatherapy, Reiki, and low-carb diet counseling, and is pursuing an online college degree in alternative medicine.
Valerie and her ex-husband were divorced in 2002. She said her ex-husband has been completely uninvolved in her son’s life and hasn’t seen him since her son was about two or three years old. Valerie cared for her son at home until he was 18. Her ex-husband owes her child support, she said, but has disappeared.
Valerie takes pride in her studies in alternative medicine. She is a sophomore in the online Bachelors in Alternative Medicine program at Everglades University of Boca Raton, FL. She is studying to become a qualified naturopath, and passed her ethics semester with high honors (597/600 points.)
DDS co-guardian seeking to and limit Valerie’s ability to make medical decisions
In a motion filed March 2 in Barnstable County Probate Court, the DDS co-guardian stated that he was seeking to transfer Valerie’s authority as “representative payee” regarding her son’s Social Security funds to either the May Institute or to himself.
The co-guardian’s motion also asked that Valerie’s medical decision making be limited to consenting to medical decisions made by others, and that Valerie be barred from removing her son from the May Institute home in the future.
The motion further stated that “it is believed” that Valerie’s “motivation” in bringing her son home to her “is primarily based on it being the only way for her to retain her present housing.” The motion referenced the eviction proceeding against Valerie.
Valerie said the co-guardian had been threatening for years to seek her removal as co-guardian of her son.
Not seeking financial remuneration
In a statement she sent to the Probate Court this week, Valerie said that she isn’t paid for caring for her son and isn’t seeking payment for that. “I want what everyone parent wants for her child. For him to be successful at his program, happy at his home life, and stable enough to mature,” she wrote.
Son’s behaviors and health are linked to his diet
Valerie said that while her son was at the first May Institute group home in Cotuit, his aggressive behaviors started to escalate, including banging his head against walls and tearing up his mattresses.
Valerie maintains that dietary changes that she insisted upon reduced the head-banging. Those dietary suggestions included giving him whole foods, including fresh vegetables, fruits, and whole-grains and essential oils supplements.
Last May, however, the DDS co-guardian stated to her in an email that her changes to her son’s diet constituted “a major step, especially if the reason is not medically required.”
Natural medicines and supplements are prescribed by doctor
Valerie said her son’s diet has been prescribed by his doctor, who has supported her request that the May Institute not feed him packaged processed foods. “The additives and chemicals are too much for his system,” she said.
Valerie added that alternative medicine has been her son’s primary medicine. She said he had strong allergies as a baby, including an allergy to infant Tylenol. “It’s no secret that a child with autism already has a compromised immune system. I had to work very hard to build his system up to be tolerant of vaccinations, and antibiotics and over-the-counter meds,’ she said. “ I knew a day would come where I wasn’t going to be in his life.”
Removed son temporarily from home in February
Valerie said that this past fall, she was informed by her son’s doctor that her son had been banging his head frequently in his group home. She said she had not been made aware of that by the group home staff.
The situation has continued, she said. In late February of this year, she took him home after a repeat of the incidents last fall. She said she again received a message that her son had been banging his head and had not received medical attention for it. “No one was returning my calls, so I went and got him,” she said.
That was when the DDS co-guardian filed the motion in court limiting her guardianship and preventing her from removing her son from the group home. In response, she said, she returned her son to the May Institute residence.
In an affidavit attached to his motion to limit Valerie’s guardianship, the DDS co-guardian maintained that Valerie had indicated in emails that she intended to bring her son home permanently. The co-guardian alleged that she was doing this to avoid eviction from her apartment.
Valerie maintained, however, that her intention in bringing her son home was to protect him. “My son communicates with behaviors,” she said. “When he’s frustrated he bangs his head. When he’s sick he bangs his head. I’m very concerned that with six residents in his group home and with only three and sometimes two staff on hand, that it’s a safety issue.”
Co-guardian opposed removal from group home despite abuse allegation
In March 2021, Valerie said she was informed that her son had been abused sexually by a staff member. She has still not been provided with details of the abuse or information as to whether there have been criminal charges filed in the matter.
In the wake of that incident, Valerie said she took her son home with her and sought placement of her son in another facility. But the DDS co-guardian objected to an alternative placement to the May Institute residence.
In a May 25, 2021, email, the DDS co-guardian stated, “I trust the May Institute and its staff to be working for the best for (Valerie’s son). I am not in favor of looking for another residential placement… I am unaware of any other residential program that would accept (her son) or be in his best interests.”
As late as June 2, 2021, the co-guardian said he continued to “fully object to his (Valerie’s son’s) removal from May until a response from DDS is obtained.”
Valerie said the co-guardian finally relented regarding removing her son from the first group home, and later in June of last year approved his move to the new residence.
Disregarded and disrespected by co-guardian and staff
After Valerie’s son was placed in his latest May Institute residence in Cotiuit last year, it appeared things were getting better. The staff appeared to be making an effort to follow her requests to improve her son’s diet, and were carrying out his occupational therapy plan.
But Valerie said her son’s continuing head-banging incidents earlier this spring and the co-guardian’s motion to limit her guardianship rights have convinced her nothing has really changed.
Valerie maintains she has been continually “disregarded and disrespected” by the DDS co-guardian and by the group home staff. “My son needs someone in addition to me who is willing to educate themselves in occupational therapy and willing to listen about alternative medicine, and, if necessary, advocate for my son,” she wrote in her recent statement to the probate judge.
We hope that DDS will reassess this case and the track record and actions of its co-guardian. Valerie’s rights as her son’s guardian should not be limited. We also intend to advocate for Valerie in her fight to stay in her apartment.
As a parent whose interest is maintaining the wellbeing of her child, Valerie should not also have to fight a system that is apparently trying to make her homeless.
Mother, who was charged with abuse after giving son Tylenol and cough syrup, says he is being neglected and isolated in his group home
Christine Davidson, who has been charged by the state with abuse after she gave her son prescribed cough syrup and Tylenol, says the real problems her son is facing include isolation and neglect in his group home.
We have joined Christine in expressing concern to the Department of Developmental Services (DDS) about conditions in the residence and a ban on home visits from her son John.
John Davidson is a resident of a group home in Waltham, which is run by WCI, Inc., a corporate provider to DDS. Christine contends that the conditions under which John is now living violate a number of DDS regulations referred to as “standards to promote dignity” (115 CMR 5 et seq.).
Christine is a co-guardian of her son. The other co-guardian, George Papastrat, is Christine’s nephew and lives in North Carolina.
Christine wants to take John back home with her, and John has repeatedly said he wants to come home. That is not being permitted, however. She said John is effectively being confined in his group home with virtually no activities.
As we noted in a recent blog post, we have raised numerous questions about the accuracy of a report written by the Disabled Persons Protection Commission (DPPC), which concluded that Christine abused her son after she gave him an “undetermined” amount of cough syrup and Tylenol last June. Since then, John has been subject to a prohibition on visits home based on the abuse finding.
Christine’s attorney, Thomas Frain, who is also COFAR’s president, has filed an appeal with DPPC of the abuse finding.
Last November, I emailed George Papastrat, John’s other co-guardian, with an explanation of our concerns about the DPPC investigation and its apparent bias against Christine. I have not recieved a reply to my message.
Only person left in the home during the day
Christine said she visited John in his group home yesterday (January 18), and found him sitting alone in the kitchen. She said the other three residents currently living in the home are being taken to day programs.
John no longer has a functioning day program, according to Christine. An Individual Support Plan (ISP) states that he lost his previous day program activities at Jewish Family Chai Works in Waltham in March 2020 because of COVID restrictions.
The ISP states that when the day program reopened on a limited basis in August 2020, John was not alowed to return to it. The ISP does not specify the reason he was not allowed to return.
Christine also said John’s physical therapy services, which he received after fracturing his leg outside his group home in 2019, have been discontinued. Yet, she said, he is still in need of those services.
Personal hygiene allegedly neglected
Christine said she often finds John’s bedroom and the bathroom in the group home to be dirty, and John is frequently unshaven and dirty when she visits him. She provided photographs of his bed, which show several damp spots that she said are urine.
She also sent a photo of what appears to be soiled toilet paper in a waste can in the bathroom. She said the toilet paper contained fecal matter.
Christine filed a complaint with DPPC on December 7 after finding Jonn sitting alone and naked on the floor of his bedroom, apparently after he slid off his wheelchair while under the care of a staff member. The complaint has been referred to the DDS area office for an administrative review, according to a letter sent by DDS to Christine on December 8.
As noted below, many of the conditions Christine described would appear to violate DDS “standards to promote dignity,” including the “opportunity to undergo typical developmental experiences.”
Christine said she believes John is declining physically and mentally in the group home and is severely depressed. “I don’t know if he’ll ever be the same person he was — energetic and engaging,” she said.
DDS doesn’t respond to concerns
On January 10, I sent an email to Joan Thompson, DDS area director, calling her attention to the apparent violations and asking that the Department investigate them.
Thompson responded the following day with a two-sentence email that did not appear to relate to my request. Thompson’s email stated the following:
After review of your request, you would need written authorization from both (co)guardians to release any information. Without the written authorization, you do not have the authority to make such a request.
Thompson’s message wasn’t signed.
I reiterated my request in a second email on January 12 and copied Gail Gillespie, the DDS director for the Boston Metro Region. I haven’t received a response to that message from either Thompson or Gillespie.
Apparent violations of DDS regulations in group home
Christine said that after his hospitalization, John was kept for months at Tewksbury State Hospital, ostensibly for treatment of a leg injury from a fall outside his group home in 2019. But she said his leg actually got worse at Tewksbury, yet he was discharged to his group home where he now needs a wheelchair.
She said the group home staff does not appear to be encouraging John to get exercise. She added that John wants to get out of his wheelchair, but the staff are not encouraging him to do so or helping him.
When John was discharged from Tewksbury in November, the group home staff was supposed to develop a chart listing weekly activities for him. But Christine said no such chart has been developed for him.
We are concerned that this overall situation may violate a number of DDS standards to promote human dignity, including a number of the “general principles,” which state that services are supposed to be provided in a manner that promotes:
- The opportunity to undergo typical developmental experiences, provided that the person’s safety and well-being are not unreasonably jeopardized,
- The opportunity to engage in activities and styles of living which encourage and maintain the integration of the person in the community through individualized social and physical environments, and
- Opportunities for daily recreational activity and physical exercise, as appropriate to the age and interests of the individual.
The apparent confinement in the group home against John’s stated wishes appears to violate additional DDS standards and other rights that are intended to promote or include:
- Self-determination to the person’s fullest capacity,
- Least restrictive care, and
- The right to be visited and to visit others under circumstances that are conducive to friendships and relationships.
ISP specified activities
John’s Individual Support Plans (ISPs) in both 2019 and 2020 discussed his enthusiasm for his day program at Chai Works. As noted, he lost that program in 2020.
John’s 2020 ISP stated that while at the day program, which he had attended since 2012, he participated in numerous activities including dance, yoga, and martial arts. He was also taken on community outings.
The 2020 ISP stated that after the day program was initially shut down in March 2020, John was able to participate in online groups connected with the program a couple of days a week for an hour or two at a time. Accoring to the ISP, John needed help logging in to the online sessions.
Christine said she was told at both Tewksbury State Hospital and at the group home that they were too short-staffed to help him log into the day program sessions. As a result, John has not been able to participate in his day program, even online, for at least the past six months, she said.
Additional conditions in group home
Christine also said that in addition to the problems with cleanliness in the home, she discovered that other residents’ laundry is repeatedly put in John’s dresser drawers even though all of his clothing is labeled.
The overall situation appears to violate the principle specifying “freedom from discomfort, distress, and deprivation which arise from an unresponsive and inhumane environment.” There also appears to be a violation of John’s additional right to “individual storage space for personal use.”
Further, according to Christine, John’s cell phones have repeatedly gone missing, first at Tewksbury and later at the group home. As a result, he is unable to make or receive calls directly from Christine or anyone else.
Christine said she has also been told not to call the group home after 6 p.m. All of that appears to violate the right of individuals to have “reasonable access to a telephone and opportunities to make and receive confidential calls…”
John’s 2020 ISP and an August 2020 staff memo noted that John liked to talk to his mother on the phone, so much so that a protocol was established to end the calls at 10 p.m.
DDS needs to change course
In my January 10 email to DDS Area Director Thompson, I requested that DDS revisit and reverse the prohibition placed on John’s visits home. As noted, I have not received a response to that email.
We are also requesting that the area office expand its review of Christine’s complaint in December after she found her son on the floor of his room. We are urging the Department to examine the overall conditions under which John is currently living and the potential violations of the Department’s regulatory standards.
COFAR blog 