COFAR blog

We first pointed out problems seven years ago with a bill in the state Legislature that would authorize Supported Decision Making (SDM) in Massachusetts.

SDM involves written agreements to replace guardians of persons with developmental disabilities with informal teams of “supporters” or advisors.

Each year, SDM legislation has gotten closer and closer to final passage in the Legislature; and yet, as far as we can see, the proponents of the bill have not made what we argue are needed changes or improvements to the versions of the bill that they have continued to file.

This year’s version of the bill, S. 109, is no exception. In our view, it has the same problems as the previous versions.

Last year’s version of the bill (S. 3132) passed the Senate in November and died in the House Ways and Means Committee, just one step away from final passage in the full House. At the time, we had urged the Ways and Means Committee not to send the bill to the House for final passage.

As we noted in a previous post about that bill, it lacked provisions to protect the rights of persons with intellectual and developmental disabilities, and their families and guardians.

S.109, this year’s version, is now before the Children, Families, and Persons with Disabilities Committee. We are similarly asking the Committee this year not to advance the bill in the legislative process without making needed changes to it.

Under the bill, an SDM “supporter” or “supporters” would help an individual with an intellectual disability, known as the “decision-maker,” make key life decisions, including decisions about their care and finances. Most people with developmental disabilities 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.

But persons with severe and profound levels of intellectual disability have greatly diminished decision-making capacities. We think many of those people are likely to be vulnerable to coercion and financial exploitation from persons on their SDM teams who may “help” them make financial decisions that don’t reflect their wishes.

In these situations, family members of persons with developmental disabilities, 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 may stand to benefit financially from the clients’ “decisions.”

Legislation still does not provide a standard for judging the decision-making capacity of the individual

In our view, a key piece missing from the SDM legislation so far has been a standard for the level of intellectual disability above which an individual can reasonably be considered to be capable of making decisions with “support” from clinicians, paid caregivers, and other SDM team members.

As was the case with previous versions of the bill, S.109 defines the “decision-maker” 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 bill. 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.

As a 2013 article on SDM in the Penn State Law Review stated,

…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. (my emphasis)

Also, “Supported decision-making” is defined in S.109 as:

…the process of supporting and accommodating the decision-maker, without impeding the self-determination of the decision-maker, in making life decisions, including, but not limited to: (i) decisions related to where the decision-maker wants to live; (ii) the services, supports, financial decisions and medical care the decision-maker wants to receive; (iii) whom the decision-maker wants to live with; and (iv) where the decision-maker wants to work.

There is no specification as to whether the “supporter(s)” would be family members. In other words, family members could be frozen out of the decision-making process if they were consistently outvoted by other supporters.

Bill doesn’t require court approval of an SDM arrangement

Currently, a person applying for guardianship must state in probate court the reason why a guardianship is necessary; and if they are applying for a full guardianship, the reason why a limited guardianship is inappropriate.

There is no requirement in S. 109, however, that the probate court approve an application for an SDM arrangement. However, S.109 would impose an additional burden in probate court on family members who continue to seek guardianship of their loved ones.

Under S. 109, an applicant for guardianship would now have to state in court, “whether alternatives to guardianship … including a supported decision-making agreement, were considered, (and) why such alternatives to guardianship and supports and services are not feasible or would not prevent the need for guardianship” (my emphasis).

Given that applying for guardianship requires probate court approval, it isn’t clear to us why that shouldn’t also be the case with an SDM agreement, which would entail making the same types of life decisions involving an incapacitated individual. Moreover, it isn’t clear why applicants for guardianships should have an additional burden placed on them in court to show why an SDM arrangement, rather than the requested guardianship, isn’t needed.

No clear protection against financial or other exploitation

S.109 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.”

This statement in the bill appears to recognize the possibility that a developmentally disabled individual can be influenced or coerced into signing a SDM agreement. The problem with the bill in this regard is there is no description of the type or level of coercion that would invalidate an SDM agreement. Also, the bill doesn’t specify who would invalidate the agreement in that case.

The legislation states that if a person suspects that a disabled individual is being abused or exploited under an SDM arrangement, they can take their complaint to the Disabled Persons Protection Commission (DPPC). But while the DPPC’s enabling statute authorizes the agency to investigate allegations of abuse and neglect, the DPPC is not specifically charged with investigating cases of alleged coercion in signing agreements.

S. 109 also states that the DPPC and the Department of Developmental Services (DDS) may petition the probate court to revoke or suspend a SDM agreement on the grounds of abuse, neglect or exploitation by supporters. But the bill doesn’t say that either the DPPC or DDS will or must petition the court to revoke the SDM agreement even if they do find abuse or neglect. It says only that they “may” petition the court to do so.

No protection against conflicts of interest, and no funding

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.

A Syracuse Law Review article published last year about SDM pilot projects in Massachusetts identified, or at least implied, a number of problems or difficulties associated with SDM, including conflicts of interest involving providers.

The Syracuse Law Review article stated 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).

But like bills that have come before it, S.109 does not require any separation between provider employees and individuals on the SDM team. They can serve in both capacities.

The Syracuse Law Review article also 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.109, however, to a potential funding mechanism for SDM in Massachusetts.

No dispute resolution process

The Syracuse Law Review article also 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.109 and previous versions of the bill would require the Executive Office of Health and Human Services in Massachusetts to establish an SDM training program, none of the bills specify or specified either a dispute resolution process for SDM arrangements or training in dispute resolution. 

Families may not fully understand the guardianship rights they will be forgoing

SDM advocates argue that the process is entirely voluntary on the part of the intellectually disabled individual, and that family members can still opt to go to court to apply for guardianship.

But it may be wrong in all cases to assume that someone who has a severe or profound level of intellectual disability has not been coerced into making what may look on the surface like a voluntary decision. Also, while a family member may still go to court to become a guardian, the  SDM legislation, as noted, would increase the burden on them to make the case for guardianship.

And while family  members might be persuaded to willingly enter into SDM agreements rather than to seek guardianship of their loved ones, we think many family members may not realize the amount of authority they would be ceding in doing so. Under an SDM arrangement, a family member would become just one member of the SDM team.

It has been our experience, that in many disputes over care, family members find themselves pitted against a united front of provider and DDS personnel. This would seem to be a highly likely dynamic in an SDM arrangement.

Unless and until the proponents of this legislation finally agree to address these issues and improve the bill, we can’t support it.