COFAR blog

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 18^th 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!

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.”