COFAR blog

Janet had always had a close relationship with her son Frankie, who has autism. (We are using pseudonyms for the mother and son to protect their identities.)

For years, Janet said, things had gone smoothly with the Department of Developmental Services (DDS), which had provided services to her son while he lived at home with her.

But at the age of 27, Frankie wanted independence, and Janet arranged with his clinicians to let him have his own apartment in November 2023. Frankie had a girlfriend who moved in with him, and that’s when things started to go south, according to Janet.

Janet said the girlfriend arranged for Frankie to be represented by a state-funded attorney, and Janet suddenly found herself accused by the attorney of being “emotionally unstable,” of “terrorizing” her son, and of refusing services for him. She said she was even accused at the time by the girlfriend of stealing her son’s car, when in fact, she owned the car.

The attorney sought to remove Janet’s guardianship of her son, and Janet is now also separately facing criminal charges in this matter of assault and trespassing. We are advocating for Janet in probate court, and are hoping the criminal charges are dropped.

Frankie has aphasia, a disorder that impedes language comprehension, and has anxiety and difficulty managing stress. Janet said Frankie is also susceptible to manipulation by people who may not have his best interests at heart.

Janet said that while Frankie lived with her, she had a good relationship with the DDS area office that served him.

But the area office changed in March of last year, a few months after Frankie moved into his own apartment in a new DDS district. The change of the office was completed roughly at the same time that Frankie’s girlfriend moved in with him.

In an arrangement planned in conjunction with Frankie’s clinicians, Janet moved into an apartment in the same building, two floors below Frankie’s apartment. They no longer lived together, but Janet said she was still able to help her son and be his “safety net,” as of one of his clinicians had recommended.

Janet initially helped Frankie’s girlfriend, who had reportedly been in danger of homelessness, and even reluctantly had the girlfriend’s name added to the lease for Frankie’s apartment. She said she assisted the girlfriend with applications for housing, transportation services, health insurance, ensuring medical appointments, and Social Security benefits.

But Janet said the girlfriend, in return, was far from grateful, and began to try to separate her from her son. She said the girlfriend then helped Frankie file the paperwork for the state-funded attorney to represent him in order to seek Janet’s removal by the court as his guardian. “She (the girlfriend) told me I was the competition,” Janet said.

As noted, Janet found herself suddenly accused in May of last year of terrorizing her son, refusing services for him and stealing his car.

Janet said there was no precedent or evidence for these accusations, yet the state-funded attorney used the accusations as a basis for a motion in probate court for Janet’s removal and the appointment of a new guardian.

The day before the attorney filed the motion, Janet said, she had entered Frankie’s apartment to find Frankie and his girlfriend meeting there with the attorney and with two care workers from the new DDS area office. At that time, Frankie told her the meeting was about removing her as his guardian. She said Frankie said he had been told by one of the DDS workers that he could not continue to receive DDS services if his mother continued to be his guardian.

The court did order Janet’s suspension as guardian in August, and appointed a new state-funded guardian who had never known or met Frankie. Janet was then forbidden from talking to her son’s doctors, and even from entering her son’s apartment after her son and his girlfriend obtained a no-trespass order against her last September.

Janet maintains that none of these things fit her son’s personality. She contends he was totally under the control of his girlfriend. 

Then, after the removal of her guardianship, Janet was accused by the girlfriend of having assaulted her, which Janet denies, and with violating the no-trespass order. Janet now found herself facing criminal assault and trespassing charges.

By way of disclosure, I am acting as Janet’s advocate in her ongoing guardianship case in probate court. She also has an attorney in that case and a court-appointed attorney in the criminal trespass and assault case. COFAR does not charge for advocacy services.

As part of her effort to defend herself in probate court, Janet submitted glowing testimonials from friends and colleagues, describing her as a committed mother and advocate for her son.

We have researched and analyzed many guardianship cases involving persons with intellectual and developmental disabilities for many years. Janet’s case appears to fit a pattern in which DDS and its service providers blame parents and other family members and guardians for problems that arise when the care process breaks down (See our blog post last week).

We think that is because family members and guardians have the least power and ability to contest that blame.

Testimonials

Janet submitted six references to the probate court from friends and professionals who vouched for her character and her efforts and value as a mother to Frankie.  At least three of the individuals who provided references expressed concerns that Frankie was being manipulated by his girlfriend into turning against his mother. Three of the references were affidavits signed under the pains and penalties of perjury.

One of the references was from Frankie’s church youth group leader, who described Janet as “a phenomenal mother. A rock and an advocate for him.”

A longtime friend of Janet’s stated that should Janet be permanently removed as her son’s legal guardian, “it would be detrimental to his health and safety. He would be lost.”

Another longtime friend wrote that Janet “has persevered to always be there for her son…, and literally showered him with love, respect, patience, and a desire for him to lead as normal a life as possible.”

A former neighbor of Janet’s wrote that Janet “demonstrated patience like no other mother I’ve seen… There is no doubt (Frankie) still requires (Janet’s) guidance. To remove her from this role would be an injustice to (Frankie) after all she has done for him throughout his life and continues to guide him with love and his best interest at heart.”

Mother pushed out of the picture

For the foreseeable future, Janet remains isolated from her son, and is tormented by the conviction that he is regressing into poor behaviors and habits. The state-funded guardian, she believes, is letting this all happen.

“She (the guardian) ignores what I’m telling her,” Janet said, and lately has refused to respond to Janet’s calls and text messages. Janet said she wants the probate judge in the case to understand that she is the only person in Frankie’s life right now who has his best interest at heart. But she’s not sure that message is getting through to the judge.

The judge has so far denied Janet’s request to be allowed to communicate with Frankie’s doctors. DDS, meanwhile, is seeking to remove her as her son’s representative payee for his Social Security payments.

The state-funded guardian is further opposing Janet’s request that she and Frankie undergo counseling together from Frankie’s clinicians.

“My job is to keep (Frankie) safe at all costs,” Janet said. “This is who he is and this is what he requires —  supervision.”

Driving in unsafe conditions and trying to tip over a casket 

Recently, Janet said, Frankie went out in subfreezing weather at night, with the temperature in single digits, wearing only pajamas and a light jacket, and drove her car to a party. He also drove on another occasion under similar conditions to a mall. “The road conditions were bad,” she said. “There was no reason for him to go. Those things would have never happened under my watch.

“Yet (the state-funded guardian) thinks it was appropriate,” Janet continued. “I had to remind her that was not appropriate given the temperatures that day. What if he were to get a flat tire or had to get out of the car for any reason? That is not appropriate attire and he could freeze”.

In another incident in December, Janet said, Frankie showed up with his girlfriend at a wake for the mother of a friend of Janet’s. Janet, who wasn’t able to attend the wake and didn’t know her son had gone to it, later found out that Frankie had shocked everyone there by trying to tip over the casket while his girlfriend watched. Janet’s friend was furious at her for not having Frankie under her control.

Based on the records we have reviewed and our interviews with Janet, we are concerned that she has been removed as the guardian of her son based on weak or nonexistent evidence. It further appears that a report of a court officer, known as a guardian ad litem, to the judge recommending Janet’s removal was biased against her.

The guardian ad litem appears to have relied on accounts and accusations made by witnesses who are hostile to Janet, and not to have interviewed or else failed to include accounts of witnesses supporting Janet in this dispute. The report even appears to have failed to include Janet’s own rebuttals to the charges against her.

We think that if one considers the entire history of Janet’s care of her son, it is evident that the accusations against her lack credibility. It defies common sense that a mother would care for her son without serious problems or conflicts for 27 years, and then, suddenly become an abuser who “terrorizes” her son and others.

We are working to try to help ensure that justice prevails in this case, and that Janet is reunited with her son and her guardianship is restored. We also hope the criminal charges against her are dropped. This case appears to be a test as to whether the system works even to a minimal degree.

We reported last month about our efforts to help family members of persons with intellectual and developmental disabilities who have lost their guardianships and have found themselves legally outgunned in probate court.

In many cases, families can’t afford attorneys whose fees can run into the tens of thousands of dollars.

Even family members that do go into probate court with attorneys often feel outnumbered by the personnel arrayed against them there. Those opponents may not only include the attorney or attorneys for the Department of Developmental Services (DDS), but, in many cases, both the state-funded guardian appointed to replace the family member, and the state-funded attorney appointed to represent the intellectually disabled client.

In some cases, even the guardian ad litem (GAL), an attorney appointed to independently advise the judge, may take what appears to be a position against the family. We have seen cases before involving biased GALs.

In two cases in which we are currently involved, the GALs appear to have sided with DDS and with the state-appointed guardians and attorneys in seeking to remove the parents’ guardianships.

Probate judges open to allowing parents’ advocate to attend sessions

Last month, I contacted probate court clerks’ offices in Worcester and Woburn to see whether I could attend court sessions on behalf of the parents in those two cases. I received conflicting answers from the offices as to whether I, as a non-attorney, could appear as an advocate in the sessions.

However, when I did appear in court in those cases, the judge allowed me, in each case, to stay and stand at the counsel table alongside a mother who is seeking to regain her guardianship of her son.

In one of the two cases last month, Middlesex Probate Judge Thomas Barbar allowed me to speak on behalf of the mother, and then suggested that I “work with” her attorney as an advocate for her. It was encouraging, although it wasn’t quite clear whether I will be allowed to continue to address the judge directly in that case.

In the other case, Worcester Probate Judge Kathryn Bailey said she would allow me to be called as a witness for that mother when her case goes to trial, tentatively in February.

I came away from both sessions with a sense that my attending as an advocate from COFAR at least provided some independent weight to both parents’ positions before the court. Both sets of family members seemed to feel that way as well.

But the jury (no pun intended) may still be out on how effective a courtroom advocate, who is not an attorney, can be, and, perhaps ironically, whether I would be allowed to participate as an advocate if the person I am supporting does not have an attorney.

In that case, it seems possible that I might be seen as acting as the family member’s attorney, which would be illegal. I may, in those cases, only be allowed to attend the court session, and perhaps not speak.

A number of years ago, I tried to attend a probate court session in support of Stan McDonald, who had been seeking for years to regain guardianship of his intellectually disabled son. That case had been impounded, meaning the entire record was sealed from public disclosure, so the judge wouldn’t even let me in the courtroom. That was even though a previous judge had let me attend a previous court session in Stan’s case.

Supreme Judicial Court ruling may support non-attorney advocacy

But even in an impounded case, it seems it may be possible for an outside advocate to be called as a witness for a family member. Even in cases in which the parent or family member doesn’t have an attorney, I think it may be possible to argue that an advocate who is a non-lawyer can intervene as an “interested person.”

In a case known as “Guardianship of B.V.G.,” the Massachusetts Judicial Supreme Court held in 2016 that the grandfather of  a young, intellectually disabled woman had the right to intervene in a probate court proceeding in order to gain permission to communicate with her.

Even though the grandfather was not B.V.G.’s guardian and wasn’t an attorney, he was an “interested person” within the meaning of the state’s Uniform Probate Code, according to the SJC.  As such, he had the right to intervene in the probate court proceeding in order to remove restrictions on his contact with his granddaughter.

The SJC noted that the Uniform Probate Code (which is contained in the state’s general laws) allows anyone defined as an “interested person” to intervene in a guardianship proceeding in probate court.  The high court concluded that an individual can be considered an interested person under the Probate Code simply by being interested in an incapacitated person’s well-being.  As such, the grandfather of B.V.G. was clearly an interested person, the high court concluded.

So, I think I could argue that I should be allowed to intervene as an advocate in guardianship cases, based on the argument that I am similarly interested in the wellbeing of the incapacitated client.

DDS objects to our submission of information to the judge

In the two ongoing cases, I submitted written reports to the judges on behalf of the mothers, arguing for the return of their guardianships. It’s not clear if those reports have been accepted by the judges for consideration. In submitting the reports, I applied to “present information” to each judge, using a probate court application form that doesn’t specify that the presenter must be an attorney.

The application form further states that the “attached written statement (of information) is not evidence and that (the applicant) may be requested to testify at Court.”

However, in the Worcester Probate Court hearing, the DDS attorney filed a motion objecting to my submission of information in the case. John Geenty Jr., a DDS assistant general counsel, asserted in his motion that I have “no expertise”; that I have “no first-hand knowledge of the evidence” in the case, and that I was “trying to provide legal representation without a law license.”

During the court session, Judge Bailey allowed me to respond verbally to Attorney Geenty’s assertions. I noted that I have had more than 20 years’ experience in analyzing guardian cases and advising families and guardians in those matters, and that I was not claiming to be an attorney. The judge didn’t contradict me, and then said she would allow me to be called as a witness for the mother. As noted, it is not clear that the judge will consider the information that I submitted.

In the second case in Middlesex Probate Court, I submitted a rebuttal to the Guardian ad Litem’s report in that case, which had found the mother unfit to remain as her son’s guardian. I argued that the GAL’s report was deficient in not having included any interviews of clinicians or other witnesses who were supportive of the mother. As noted, it isn’t clear yet whether the judge in that case will take my report into consideration.

Difficulties in getting legal representation

We are, meanwhile, exploring other options for families such as contacting attorneys that provide pro bono representation.

As we previously reported, we have been trying to help a DDS client who told us she had been placed involuntarily under the guardianship of a DDS-funded provider agency. In that case, the client had asked that a longtime friend and former caregiver of hers become her guardian.

However, in December 2022, the Bristol Probate and Family Court appointed the Cooperative for Human Services, a corporate DDS provider, as the client’s guardian. The Cooperative has reportedly assigned an employee of the organization to provide guardianship services to the client, but the client told us she doesn’t even know who that appointed guardian is and has never met her.

Last month, I emailed four legal advocacy organizations to request that they represent the client in getting the guardian she wants.

I did receive a response on Wednesday (November 6) from the executive director of the Easthampton-based Center for Public Representation (CPR), who expressed interest in meeting with the client and “exploring the kind of help she is seeking.” We are trying to arrange that meeting now.

Two other legal advocacy organizations — the Boston-based Disability Law Center (DLC) and Brockton-based South Coastal Counties Legal Services —  stated that they either don’t or can’t handle guardianship cases, while a third — the National Center on Law and Elder Rights — hasn’t responded to us.

As we stated before, the DDS-probate court system appears to be broken in that it doesn’t respond well to families of DDS clients. It particularly doesn’t respond well to families that aren’t represented by attorneys. But we are hopeful that there are other ways in which we can help.

If anyone has any additional insights into these matters, please feel free to share them with us.

A redrafted version of Supported Decision Making (SDM) legislation, which appears to be close to enactment in the state Legislature, would give a major banking lobbying organization a key role in implementing SDM in Massachusetts.

The latest SDM bills (H.4924 and H.4949), which are actually identical drafts, have been sent to the House Rules and House Ways and Means Committees respectively, and either one of those bills appears to be a step away from enactment on the House and Senate floors.

Each bill specifies in the latest redraft that the Massachusetts Bankers Association would be involved both in developing a training program on the rights and obligations of SDM supporters, and in studying the feasibility of a state registry of all existing SDM agreements in the state.

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.

On August 15, I sent emails to the Senate president, House speaker, and chairs of the Children, Families, and Persons with Disabilities Committee, Judiciary Committee, Rules Committee, and House Ways and Means Committee, expressing concern that the redrafted legislation contains a number of flawed provisions.

In a subsequent email last week (August 22), I sent a follow-up email to the co-chairs of the Children and Families Committee, arguing that the legislation also fails to address a potential conflict of interest involving the Mass. Bankers Association.

We maintain that the redrafted 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 new provision against conflicts of interest held by SDM supporters.

Mass. Bankers role

In an emailed response on August 20 to my first email, State Representative Jay Livingstone, House chair of the Children and Families Committee, maintained that the Mass. Bankers Association was added to the legislation because, “Financial institutions may be requested to accept the (SDM) agreements. The Mass. Bankers Association’s expertise may be helpful to represent those interests,” he added.

The Bankers Association is one of five non-governmental organizations given roles by the legislation in developing SDM, including the Arc of Massachusetts, the Disability Law Center, the Mass. Medical Society, and the Mass. Health and Hospital Association.

Livingstone also responded to a number of my other concerns, as I’ll discuss below. Unfortunately, our concerns about the legislation have not been assuaged.

With regard to the Mass. Bankers Association, we are concerned that banks and other financial organizations may have interests in financing or investing in the development of care facilities or corporate provider organizations, and that those financial interests could then assume a prominent role in SDM training programs or even agreements under the legislation. There is no provision in the legislation to prevent conflicts of interest involving banking, investment firms, or other financial interests in SDM arrangements.

For instance, the Mass. Bankers Association listed (H.4977), which will provide millions of dollars to finance Accessory Dwelling Units (ADUs), as a bill it was tracking this year. The bill has since been signed into law. The Arc of Massachusetts describes the development of ADUs as “one of its priorities over four sessions.” ADUs may well be a subject of consideration by SDM supporters.

We think it would be more appropriate to select a neutral individual who might be a faculty member of a university business school or economics department as an SDM training consultant, rather than selecting a member of the Mass. Bankers Association.

Major changes to Uniform Probate Code

Both SDM bills (H.4294 and H.4949) were reported favorably late last month by the Children, Families, and Persons with Disabilities Committee and are now in the House Rules and House Ways and Means Committees respectively. This legislation would make significant changes to the Massachusetts Uniform Probate Code (M.G.L. c. 190B), and yet the legislation has not been voted on favorably by the Judiciary Committee.

We are concerned that this redrafted legislation, which has not had a public hearing, could be enacted without a roll call vote in informal House and Senate sessions at any time.

Sets up conflict between SDM supporters and families and guardians

Under the redrafted legislation, it appears that an individual under a full guardianship could also sign an SDM agreement. In that case, we asked the legislators, what would the resolution process be if there were a dispute between the SDM team and the guardian?

In his August 20 response, Rep. Livingstone stated that, “Once an individual becomes subject to a full or plenary guardianship, they could not sign an SDM agreement. An SDM agreement is an alternative to guardianship.“

But that does not appear to be the case. There doesn’t appear to be any language in the legislation that would preclude signing an SDM agreement if there is a full or plenary guardianship.

At another point in his response, in fact, Rep. Livingstone stated that, “If the (probate) court that created the guardianship left a SDM agreement in place in whole or in part, the court should work out the roles and responsibilities of each. If there was a conflict (between a guardian and SDM supporters), the parties could go back to court to resolve the issues if they could not work them out themselves.”

However, as I replied to Livingstone, the legislation doesn’t require the court to work out the roles and responsibilities of each party. Further, having the parties “go back to court to resolve the issues” would automatically place the guardian at a disadvantage, in our view, if, as is likely, the supporters would outnumber the guardian in any court proceeding.

Questionable access to medical records

The legislation states that an intellectually disabled “decision maker” may provide a supporter with access to their medical records, including confidential health information, and with access to psychological, financial and other records. The legislation later states that the SDM agreement must “specifically reference” a supporter’s access to medical records etc.

To us, this raises the question: If the decision maker is under a full or plenary guardianship, why would it be necessary for SDM supporters to have access to these records unless the supporters’ authority were equal or greater than the guardian’s authority?

Questions about confidentiality

In granting access to confidential records to SDM supporters, the legislation states that a supporter “shall keep confidential any information obtained in the process of assisting the decision-maker.”

To us, this raises the question: Does this provision require a supporter to decline to disclose such information to either the guardian or to other supporters?

Livingstone responded that an individual supporter would be required to keep such information completely confidential “unless directed to (reveal it) by the decision-maker.”

This is a particularly troubling provision in that it could be used by SDM supporters to marginalize family members or guardians by keeping them in the dark regarding important aspects of an individual’s health or medical care.

Weak conflict of interest provision

The redrafted legislation states that a supporter “shall not participate in any life decision in which they have a conflict of interest.” This includes, the legislation states, “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, which was the case under previous versions of the SDM legislation. 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.

In our view, this provision does not fully protect individuals with I/DD against conflicts of interest. The legislation doesn’t provide for enforcement of this provision.

Also, whether a specific conflict of interest exists in a particular matter could be open to interpretation. We believe employees of providers that offer services to SDM “decision makers” should not be allowed to participate in SDM agreements period.

No enforcement of anti-coercion provision

The legislation states 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 evidence of this?

Livingstone responded that, “An interested party would need to report alleged undue influence or coercion in an SDM agreement’s creation or signing to the Disabled Persons Protection Commission, the Elder Abuse Prevention Hotline or the court for any further action.”

The problem is the legislation does not state that the Disabled Persons Protection Commission (DPPC) should investigate allegations of undue influence or coercion in the signing of an SDM agreement.

The DPPC’s enabling statute (M.G.L. c. 19C) requires the DPPC to investigate allegations of abuse or neglect that causes significant physical or emotional injury. The DPPC’s regulations (118 CMR 2.02) state that serious emotional injury can result from coercion; but it is unlikely that the regulations contemplate the type of coercion referred to in the SDM legislation.

The often subtle coercion that would be involved in the signing of an SDM agreement would be unlikely, or at least would not necessarily result in emotional distress to the signer. As a result, even if such an allegation of coercion was made to the DPPC, it isn’t clear that the agency would be statutorily required or authorized to investigate it.

Similarly, there is no way to enforce other feel-good provisions in the legislation, such as one stating that a supporter must “respect the values, beliefs, and preferences of the decision-maker, act honestly, diligently, and in good faith; act within the scope identified by the decision-maker, (and) support and implement the direction, will, and preferences of the decision-maker.”

Termination provision unworkable for persons who are unable to communicate

The legislation states that the decision-maker “may amend or terminate a supported decision-making agreement at any time…”

But what would the process be for termination if the decision-maker were unable to communicate?

Livingstone stated that, “If the decision-maker became incapacitated while the SDM agreement was valid, the bill provides that the agreement would be terminated.”

The problem is that “incapacitation” is not defined in the legislation. Any individual under guardianship is considered under the Probate Code to be incapacitated (see M.G.L. c. 190B, s. 5-303). This, in fact, goes to a key problem we have repeatedly identified with the SDM legislation. The legislation does not provide a standard level of capacity of an individual below which SDM would not be feasible.

Additional burden of proof

As we have repeatedly pointed out to the legislators, all of the versions of 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.”

Perhaps the major concern we have also repeatedly raised about the SDM legislation is, as noted, that it doesn’t specify a level of functioning or decision-making capacity below which an SDM arrangement would not be considered feasible. 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.

As a result, under the SDM legislation, anyone can sign an SDM agreement, no matter how low their cognitive functioning might be, and then be labeled the “decision maker” in that agreement. That aspect of the legislation alone shows that it is not based in reality.

For all of these reasons, we hope lawmakers do not enact this legislation in the remainder of the current legislative session. SDM may work for some high-functioning individuals. But it needs to go back to the drawing board in Massachusetts.

Legislation that would authorize Supported Decision Making (SDM) as an alternative to guardianship of persons with intellectual and developmental disabilities (I/DD) in Massachusetts is once again close to final passage in the state Legislature.

This time, the circumstances surrounding the legislative process involving the bill are particularly troubling.

SDM involves enacting written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters then provide those individuals with “decision-making assistance” about their care and finances.

On July 29, with two days to go in the formal 193^rd legislative session, the Children, Families, and Persons with Disabilities Committee referred two newly revised, identical SDM bills — H.4924 and H.4949 — to the Rules Committee.

Although the 193rd legislative session is now formally over, we understand that either or both of the redrafted bills can be referred at any time until the end of the year to either the House or Senate floor for final enactment. Once referred, the legislation could be enacted in “informal sessions” unless there is an objection from a lawmaker.

During informal sessions, there are usually only a few legislators present, and no roll call votes are taken.

Yet, the redrafted legislation appears to make major changes to the Massachusetts Uniform Probate Code (M.G.L. c. 190B), a set of provisions governing the probate court system.

Prior to July 29, the Children and Families Committee had delayed taking action on an earlier version of the legislation for more than a year.

In our view, guardianship is the most important legal protection family members have to ensure adequate care and services for their loved ones with I/DD.

In an email I sent last week (August 8) to key legislators, I said that legislation imposing arrangements that weaken guardianship also weakens the decision-making rights of families.

I noted that the redrafted legislation doesn’t address specifc oncerns we had previously raised about SDM with those legislators. While SDM may be appropriate for high-functioning individuals, it may expose lower functioning persons to financial exploitation and reduce the input family members have over their care and services.

Arrangements that weaken guardianship further violate the spirit of the federal Developmental Disabilities Assistance and Bill of Rights Act, which states that family members of persons with I/DD are the “primary decision-makers” in their care and services.

No vote by the Judiciary Committee

In addition to the lack of a roll call vote if the redrafted SDM bills are now taken up in the House or Senate, it appears the bills have not been voted on by the Legislature’s Judiciary Committee. The Judiciary Committee has jurisdiction over legislation pertaining to the courts in Massachusetts and the Probate Code.

Also, there has been no public hearing on the redrafted legislation, which appears to be substantially different from an earlier version of the measure. The Children and Families Committee did hold a public hearing on the earlier version in September 2023.

A staff member of the Children and Families Committee told us that the Judiciary Committee was involved with the Children and Families Committee in drafting H.4924 and H.4949. However, there is no indication on the Legislature’s website that the redrafted legislation was actually voted on favorably by the Judiciary Committee.

Committee co-chair says “plenty of time” for our concerns to be considered

In a response to my August 8 email, Representative Jay Livingstone, House chair of the Children and Families Committee, maintained that, “There is plenty of time for this bill and your (COFAR’s) comments to be considered.”

We hope that is the case, although we had raised concerns about the SDM legislation with the Children and Families Committee last year.

Livingstone also said there was “still a possibility” of a roll call vote on the redrafted legislation this year because the Senate president and House speaker have agreed to call a special session at some point before the end of the year. Nevertheless, it isn’t clear whether the SDM bills would be taken up during that special session if they are enacted this year.

Livingstone further acknowledged that the Judiciary Committee has not voted on either H.4924 or H.4949.

Redrafted legislation raises questions

In one respect, we think the redrafted legislation might be better than the earlier version of the measure.

Apparently based on a concern we raised last year, the redrafted legislation (H.4924 and H.4949) would prohibit an SDM supporter from having a conflict of interest involving their employer.

However, it isn’t clear that the redrafted legislation would completely rule out human services provider employees from serving as SDM supporters. Those individuals would be prohibited only from participating in specific “life decisions” in which they or their employers had a financial interest.

Moreover, we think the redrafted legislation as a whole would still weaken guardianship because it would set SDM up in the Probate Code as an alternative to guardianship. Under the redrafted legislation, anyone petitioning in probate court to become a guardian would have to state why either a more limited guardianship or an SDM agreement was “inappropriate.”

That SDM provision would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian. Yet, an SDM agreement itself apparently doesn’t require similar court approval. Overall, we think that this legislation may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.

Another concern we have about the SDM legislation is that it doesn’t specify a level of functioning and decision-making capacity below which an SDM arrangement would not be considered feasible. 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.

For all of those reasons, we think this is not the time to enact this legislation. We hope legislative leaders will recognize the need to go back to the drawing board in the next legislative session, and address the concerns we have raised.

A little-known provision in proposed Supported Decision Making (SDM) legislation would impose an additional burden of proof on persons petitioning in probate court to become guardians of their loved ones with intellectual or developmental disabilities (I/DD) in Massachusetts.

That is one of several concerns that COFAR has raised with two committees in the state Legislature that are considering bills to authorize SDM as a potential replacement for guardianships.

Two nearly identical SDM bills have been filed in the House and a third in the Senate this year (H.201, H.1485, and S.109). As we reported, the House bills were mistakenly referred to separate legislative committees – the Children, Families, and Persons with Disabilities Committee and the Judiciary Committee.

We have contacted both committees to suggest changes to the bills, and to urge that both committees consider a single bill rather than separate bills.

SDM involves enacting written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. We have long raised concerns that while SDM may be appropriate for high-functioning individuals, it may expose lower functioning persons to financial exploitation and reduce the input family members have over their care and services.

Additional burden of proof

One of our key concerns about the SDM bills is that while proponents of the legislation tout SDM as an informal process that doesn’t require persons to go to court to enact SDM agreements, the legislation would actually increase the burden in court on those seeking to become guardians.

A little-discussed provision in each of the bills states that in applying or petitioning for guardianship in probate court, persons must state whether they have considered SDM as an “alternative to guardianship,” and why SDM would not be “feasible… or would not avoid the need for guardianship.”

We advise families that guardianship is vitally important in advocating effectively for loved ones with cognitive disabilities that are severe enough to prevent them from fully appreciating the decisions that they make. Without guardianship, family members often find they have little say over the care and services of their loved ones.

The provision in the SDM legislation requiring petitioners for guardianship to demonstrate why SDM is not feasible or not superior to guardianship is, we think, the most radical aspect of the proposed legislation, and is one that we are strongly urging each committee to remove from the bills.

We think the provision would predispose probate court judges to deny guardianship petitions unless the petitioner can meet a higher burden of proof than is now required that a guardianship is appropriate. That burden is considerable.

Currently, when someone files a guardianship petition, the petition must be accompanied by a Clinical Team Report dated within the previous 180 days. The clinical team must consist of a physician, a licensed psychologist and a social worker.

The petitioner must also explain why more limited forms of guardianship, such as a conservator to manage financial affairs only, is not appropriate, and why a full guardianship is necessary. The proposed SDM legislation would add consideration of the appropriateness of SDM to that burden of proof.

At the same time, the legislation would not require an individual to go to court to establish an SDM agreement. That latter factor is often cited by SDM proponents as an advantage in SDM arrangements.

But what the SDM proponents don’t mention is that the legislation still brings the probate court into the picture – only it does so in order to increase the burden on petitioners for guardianship. That provision, in our view, shows that the real purpose of the SDM legislation appears to be to bring about an end to guardianship in Massachusetts.

Additional safeguards needed

We are also asking both the Children and Families and Judiciary Committees to consider adding the following safeguards to the SDM bills:

• A specified standard for the level of functioning and decision-making capacity of the individual, below which an SDM arrangement would not be considered feasible.

As was the case with previous versions of the SDM legislation, the three bills this year define the “decision-maker” in an SDM agreement as “an adult who seeks to execute, or has executed, a supported decision making agreement with one or more supporters…”

There is no further specification about the decision maker in the bills. There is no differentiation in the definition between individuals with greater or lesser degrees of intellectual disability, and no consideration whether persons with low levels of cognitive functioning are really capable of making and appreciating life-altering decisions.

• A provision prohibiting employees of corporate residential and other providers from serving as members of an individual’s SDM team if those companies are also providing services to the individual.

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 pending bills do not require any separation between provider employees and other individuals on the SDM team. Providers could serve in both capacities.

• Clarification of a statement in the Senate SDM bill (S.109) 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.”

We think the legislation should state which individual or entity would make the decision to render the SDM agreement invalid in that case.

• A change in the wording in each of the bills of the following language from “may” to “shall”:

…the DPPC (Disabled Persons Protection Commission) and DDS (Department of Developmental Services) may petition the probate court to revoke or suspend a SDM agreement on the grounds of abuse, neglect or exploitation by supporters.

• A provision establishing a dispute resolution process involving SDM agreements, and specification of a funding source for implementing SDM.

A Syracuse Law Review article stated that one of the lessons of SDM pilot projects in Massachusetts and elsewhere was that a dedicated funding source is needed to implement SDM for a large number of individuals. But there is no reference in the pending bills to a funding source for SDM in Massachusetts.

The Syracuse Law Review article also stated that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a two-day training session for SDM mediators. But while the SDM bills in Massachusetts would require the state to establish an SDM training program, none of the bills specify a dispute resolution process for SDM arrangements or training in dispute resolution. 

We hope that both legislative committees consider these concerns carefully. While the proponents of SDM may have good intentions, the devil is in the details.

Regardless of what the SDM proponents are telling the lawmakers, those lawmakers need to understand that this legislation, as currently written, will have far-reaching and long-term consequences; and we don’t think those consequences would be good for families and guardians of persons with I/DD.

In an admittedly mistaken parliamentary decision, the state Legislature’s House clerk earlier this year referred two virtually identical House bills that would authorize Supported Decision Making (SDM) in Massachusetts to two separate legislative committees.

The filing and referrals of these bills are raising a concern for us that problems we have cited with the legislation may not be addressed in the possible confusion over the measures. (We will discuss our proposed safeguards for the legislation in an upcoming post.)

SDM involves enacting written agreements to replace guardians of persons with developmental disabilities with informal teams of “supporters” or advisors. We have long raised concerns that while SDM may be appropriate for high-functioning individuals, it may expose lower functioning persons to financial exploitation and reduce the input family members have over their care and services.

It isn’t clear why two separate and nearly identical SDM-authorization bills were introduced in the House this year. We think it is likely that proponents of SDM asked legislators to file both measures in order to increase the chances of passage of the legislation.

However, the referrals of the two bills to separate committees appear to violate a provision in the Legislature’s Joint Rules, which states that “each matter shall be referred only to one joint committee for consideration …(and) The committee to which a matter is initially referred may discharge the matter to another committee with jurisdiction over the matter.”

House clerk says double referral was a ‘mistake’

In an interview last week with COFAR, House Clerk Steven James acknowledged that the double referral was a “mistake and an inconsistency.” A single bill should have gone to one committee from which it could then be sent or discharged to the other committee, he said.

James referred both bills on the same day – February 16 – to the separate committees. One of the bills (H.201) was referred to the Children, Families, and Persons with Disabilities Committee, and the other (H.1485) to the Judiciary Committee. The separate bills are still before those committees.

James said he thinks the mistake may have occurred because each House bill has a slightly different title, and his office’s computer may therefore have identified the bills as separate pieces of legislation.

James said that “the remedy is to get one of the committees to discharge its bill to the other committee.” He said he thought the Judiciary Committee, in particular, should discharge H.1485 to the Children and Families Committee because that committee considered a similar bill last year, and H.201 is a refile of that bill.

In fact, there is even a third identical SDM bill (S.109), which was also filed this year. But that measure was referred by the Senate clerk on the same day as H.201 was to the Children and Families Committee. As a result, we think those two bills are likely to be merged by the committee into one bill if the committee does report favorably on the legislation.

A staff person with the Children and Families Committee said that both that committee and the Judiciary Committee are “coordinating our efforts” on the two House bills. However, the staff person did not say either committee would discharge their bill to the other.

Judiciary Committee staff did not respond to an inquiry by COFAR about the matter.

Previously another Children and Families Committee staff person had said that both committees had “decided to proceed and evaluate the bills separately.”

If so, it is concerning that the Children and Families Committee, which has jurisdiction over disabilities issues, might then have no input in the disposition of H.1485, which would potentially have a substantial impact on the way services are delivered to persons with I/DD.

Similarly, the Judiciary Committee, which has jurisdiction over judicial issues, might have no input in the disposition of H.201, which would potentially have a substantial impact on the way probate courts decide applications for guardianship of persons with I/DD.

Last year, an SDM bill, which was refiled this year as H.201, came close to passage in the Legislature. It passed the Senate in November 2022, and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to the House after we identified problems with the legislation.

It is clear that proponents of SDM are intent on using every possible parliamentary method they can find of gaining passage of this legislation — possibly even methods that violate legislative rules. It would be nice if they showed a similar interest in improving the legislation.