COFAR blog

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.