Home > Uncategorized > SDM bill close to passage in Legislature, yet still lacks safeguards to protect individual and family rights

SDM bill close to passage in Legislature, yet still lacks safeguards to protect individual and family rights

Legislation to establish Supported Decision Making (SDM) for persons with intellectual and developmental disabilities (I/DD) in Massachusetts has gotten close to final passage in the state Legislature.

But, as we’ve said about similar bills in the past, the current bill (S. 3132) lacks safeguards to protect the rights of individuals in the Department of Developmental Services (DDS) system and the rights of their family members and guardians.

The bill, which would replace guardianship of individuals with informal teams of “supporters,” passed the Senate in November, and is now in the House Ways and Means Committee. We have urged key legislators not to pass this bill during the remaining “informal” House session in which the bill would not even require debate or a recorded vote by individual members.

Under the legislation, the SDM supporters would help individuals with intellectual and developmental disabilities (I/DD) make key life decisions, including decisions about their care and finances. Most people with I/DD are currently under guardianship. But SDM proponents maintain that guardianship unduly restricts their right to make those decisions.

In our view, however, the bill continues to lack safeguards to protect individuals with I/DD from potential financial exploitation, and to prevent the marginalization of their family members in SDM arrangements. A key piece missing from the bill is a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.

We recently informed the House Ways and Means staff that a Syracuse Law Review article published earlier this year about SDM pilot projects in Massachusetts identifies, or at least implies, a number of problems or difficulties associated with SDM that are not addressed in the bill.

The lead author of the law review article is Cathy Costanzo, executive director of the Center for Public Representation (CPR), a Massachusetts-based nonprofit law firm that is one of SDM’s major supporters. The article is highly supportive of SDM as an alternative or replacement for guardianship. But among the issues or problems with SDM that the article raises or implies are the following:

Lack of a standard for decision-making ability

The law review article is not specific about the levels of I/DD among the SDM pilot project participants. It states that in a CPR-sponsored pilot project in Massachusetts, there were eight participants who “represented a cross-section of people with varying support needs and from a range of demographics.”

The article doesn’t say, however, whether any of these participants were non-verbal, for instance, or whether they were all capable of understanding the decisions they were making under the SDM model. Our concern has to do with the fact that SDM assigns the role of the “decision maker” to the person with I/DD. Neither the article nor S.3132 discuss whether there is a level of ID below which it is not possible for the participant to appreciate or understand the decisions they are supposedly making.

We hope legislators understand that there is a wide range among levels of intellectual disability (ID), and that those levels have different impacts on an individual’s ability to make decisions. For instance, as described by the American Psychiatric Association (APA), persons with severe and profound levels of ID have IQ levels of 35 or below. The average IQ score is 100.

According to the APA, persons with severe ID comprise about 3 to 4% of the total ID population. The APA notes that for those people, “communication skills are very basic,” and “self-care activities require daily assistance.”

Profound ID applies to 1 to 2% of the ID population who have IQs below 20. Those persons are “dependent upon others for all aspects of daily care, and “communication skills are quite limited.”

For people in those categories, we think the potential for informed decision making about key life decisions, even with support from others, is very low if not non-existent. Yet, S. 3132 makes no allowance for that. The bill draws no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD.

As a Penn State Law Review article about SDM states:

…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes.

Given the diminished decision making capacity among persons with severe and profound levels of ID, we think those people are especially vulnerable to financial exploitation from persons on their support teams who may “help” them make financial decisions that don’t reflect their wishes. See our discussion below about the potential conflict of interest faced by support team members who are also employees of corporate providers that provide services to the disabled individuals.

In these situations, family members of persons with I/DD, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who stand to benefit financially from the clients’ “decisions.”

We think there is a greater potential for SDM to work effectively for people with what the APA describes as mild levels of ID.  Mild ID, which comprises an IQ range of 50 to 70, includes about 85 percent of people with intellectual disabilities.

According to the APA, people with mild ID “are mostly self-sufficient with sufficient supports.” Those supports, the APA says, “might include assistance with life decisions.” So, it makes sense to assume that people with mild ID are capable of participating in a team discussion that would result in a decision of that magnitude.

A potentially more problematic group in terms of decision making ability are those persons with what the APA labels as moderate intellectual disability. People in this group, who have IQs ranging from 36 to 49, comprise about 10% of the ID population.

According to the APA, people with moderate ID need support for making “social decisions (particularly romantic decisions).” Independent living may be achieved for this group “with moderate supports such as those available in group homes.”

Once again, S. 3132 doesn’t make distinctions between any of these levels of ID. The bill assumes that all persons with I/DD, no matter how low their level of cognition is, are capable of making complex life decisions.

Conflicts of interest in SDM support teams

As previously noted, members of an individual’s SDM team who are also service providers to that person face a potential conflict of interest when they advise the “decision maker” about making use of the services they provide. The Syracuse Law Review article states that in the Massachusetts pilot project:

…project staff had frank discussions with the Decision Maker and supporters about any potential conflict of interest and how to draft an agreement to minimize the potential conflict, such as having paid supporters not assist with decision-making support for issues that concern services from the agency paying the supporter (my emphasis).

There is, however, no such restriction in S.3132 against providers being involved in decision-making regarding services they provide. We think the SDM legislation needs such a provision.

Need for public funding

The Syracuse Law Review article stated that one of the lessons of the Massachusetts and other pilot projects was that “without dedicated funding, ample cash reserves or an extraordinary commitment to Supported Decision Making, it is very difficult for organizations to introduce, implement and help to support Supported Decision Making for a large number of individuals.”

There is no reference in S.3132, however, to a potential funding mechanism for SDM in Massachusetts.  At the same time, the law review article states that providing public funding for SDM could introduce other problems into the model by turning it into a paid service.

Lack of a dispute resolution process

The Syracuse Law Review article recognizes that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a “Mediation Module designed as a two-day training for mediators.”  While S.3132 requires EOHHS to establish an SDM training program in Massachusetts, it doesn’t specify that the program should include training in dispute resolution.

In our experience, many disputes in the care of persons with I/DD occur between family members or guardians, on one hand, and DDS and providers, on the other. In other words, DDS tends to support the providers’ positions in these matters, and family members and guardians are often left in an isolated position. What may be needed is an independent mediation process for disputes that places family members on a level playing field with the other parties when disputes arise.

It’s interesting that many of our major concerns about SDM are either discussed or implied in the Syracuse Law Review article, which was written by major SDM proponents. The Legislature has yet to come up with a bill that addresses these problems. SDM is a concept that needs to go back to the drawing board in the coming legislative session.

  1. Nancy Crockett
    December 29, 2022 at 10:44 am

    Love the work that you do. It is so needed. Thank you.

    Liked by 1 person

  2. December 29, 2022 at 1:03 pm

    Having been legal co-guardian for my sister who has a severe intellectual disability for many years, and also knowing many family members of folks with ID, some who are guardians and some who are not, I can think of several times when it has been crucial to be a guardian. The first is always in medical situations. Hospitals do not recognize supported decision makers and want guardians to make decisions about medical procedures. This is just reality. If there is no guardian, a hospital can and will sometimes go to court and ask for a hospital attorney to be appointed as one. No one wants that. It is the exact opposite of “informed and supported”. Recently a Boston Globe article points out the necessity of having legal guardians for individuals who are essentially stranded in hospitals.

    https://www.bostonglobe.com/2022/12/29/opinion/hospital-delays-highlight-need-public-guardianship-funding/

    In times of a proposed placement change for a resident in DDS care, only a guardian can put a stop to a change that is not in a person’s best interest, and if they are in a hospital, only a guardian can approve a move elsewhere.

    Finances, coercion, abuse, all of these situations require a strong guardian, hopefully who is also a “supported decision maker”; ideally a family member or close friend who knows and cares about the individual with ID and will make decisions in their best interests, taking into account their likes and dislikes, and what is best for them. I was once told that my sister would have to attend a Red Sox game because “the whole house is going”. And being asked by a staff member, “How do I know she wouldn’t like it?” My answer was simple: I know she wouldn’t like it because I know her. She is afraid of crowds, loud noises, doesn’t understand baseball, doesn’t like being out in the sun and cannot sit for long stretches in that type of environment. My next statement: I am her guardian and I don’t approve the trip. “Do you expect us to “float” staff over to stay behind with her”. I sure do. She was not forced to attend an event that was someone else’s idea of a good time. Guardianship is a protection of someone’s rights. To call it the diminution of someone’s rights is not true. It is the exact opposite.

    Liked by 1 person

    • December 29, 2022 at 1:49 pm

      Great points, Colleen. I think that were you simply a family member on your sister’s SDM team and not her guardian, you would likely have been outvoted in the decision about taking her to the ball game. And yet, you would probably have been the only member of the team who clearly understood her likes and dislikes.

      Liked by 1 person

      • December 29, 2022 at 2:08 pm

        She has a good team, and many agreed with me, but were also afraid to speak up because they’re employees. So a guardian can take the heat off staff as well. Being outside the system and still having a voice is very important for protecting people’s rights and wishes.

        Liked by 1 person

      • peapod95
        December 29, 2022 at 4:48 pm

        🤦‍♀️ hence the I in ISP individualized. Not one size fits all. Good for you

        Like

  3. Barbara Govoni
    December 29, 2022 at 3:13 pm

    This simply reminds me of how UNREALISTIC ALL of these people are who make such Blanket decisions, Without regard for the “individual” they claim to want to help…so discouraging! As the Mother of a 41 year son with Down’s Syndrome, I know First hand how detrimental a Bill like this would be, as All decisions in my son’s life regarding Medical/Financial, are made by Me!

    Perhaps the legislators should talk to Parents/Guardians.
    Barb Govoni

    Liked by 2 people

  4. peapod95
    December 29, 2022 at 4:44 pm

    That’s crazy. Obtaining guardianship of my Intellectually and physically disabled daughter at age 18 was a labor intensive task (and expensive). The courts required several evaluations from licensed and credentialed professionals in the medical, psychiatric and Social Service industries before they would even hear my request for guardianship. All of these professionals concurred that she could not make Healthcare, financial, housing and/or other important life decisions for herself. With support, (at now age 27) she can choose preferred social activities, what she wants to eat and, what she wants to wear. Again, with support or she would be eating chips 24/7 or wearing shorts in the summer. The judge, based on the testing results and recommendations from these professionals, granted her father and I full legal custody/guardianship. I’m required to fill out an provide the probate court with an annual guardianship care plan. Are these professionals opinions and the decision of a judge now being questioned? Is the state going to reimburse families the 3k plus they spent to get guardianship? During covid, I was on a group email sent to all guardians of the 4 residents in the home my daughter lives. One recipient was obviously a lawyer at a firm appointed as guardian of one of the residents who has no family. Her response was…..”is this the house where ——– lives🤦‍♀️

    Liked by 1 person

  5. itanzman
    December 29, 2022 at 7:05 pm

    I wrote to my state senator, but she’s probably voting for it. SDM is such a bad idea.

    Like

  6. Anonymous
    December 30, 2022 at 3:41 pm

    Thank you Dave and COFAR for your advocacy on these issues. Could you post the links for finding state representatives and the House Ways and Means Committee? Then anyone reading this can call or email with their comments and concerns.

    Like

    • December 30, 2022 at 4:47 pm

      Good point. People can find their legislators here: https://malegislature.gov/Search/FindMyLegislator

      You can contact the House Ways and Means Committee at (617) 722-2990, or email the Committee chair, Rep. Aaron Michlewitz at Aaron.M.Michlewitz@mahouse.gov.

      Like

      • Anonymous
        December 30, 2022 at 5:00 pm

        Mr Kessel

        Does this apply to individuals who are already under guardianship??? And, reside in a congregate care facility? Do I have to worry about losing guardianship of my daughter if this passes???

        Thank you

        Like

      • December 30, 2022 at 8:30 pm

        I think you would only be in danger of losing your guardianship if someone were to challenge it in probate court. That could happen if someone were to convince your daughter to enter into an SDM arrangement and end your guardianship. Whoever was seeking to enact the SDM agreement would still have to go to court to remove you as guardian. If this bill were to pass, however, it could put some pressure on the probate court to consider your daughter’s stated wish to enter into the SDM agreement. That’s just my opinion, and I’m not an attorney.

        Like

  7. Bill
    January 4, 2023 at 7:21 pm

    What are you “autism parents” going to do to protect those with autism from becoming victims of violent crimes!? A news story from a few days ago in which a bad autism mom comittment suicide in a jail after being finally sentenced for the murder of her 8 year old son with autism a crime which occurred in 2010. The murderer name is Gigi Jordan. There were 2 mass murders of disabled people some with autism that happened in 2016 one in California one in Kanagawa Japan. If the guardianship laws do not get justice and or protect those with autism who are crime victims or to prevent that crime to heck with those laws also. The mass murderer were employees at some kind of group home.

    Like

    • January 4, 2023 at 8:20 pm

      I’m not following your logic, Bill. I don’t see how the murders you are referring to had much, if anything, to do with guardianship laws.

      Like

  8. Karen Faiola
    January 5, 2023 at 5:55 pm

    This SDM Bill seems to be another power grab for DDS. Right on this very blog site I read about a mother who shared guardianship with DDS who actually kept her from seeing her son and is suing her to take away her partial guardianship. Apparently, she saved her sons life who lives in a group home. No employee at this group home did anything about her son’s symptoms but voice their opinions. The mother was banned from seeing her son for two weeks, which is considered abuse defined in DPPC regulations (118 CMR 2.02). The SDM Bill seems to cancel out “The Real Lives Law” passed in 2014. Any bill that promotes non-family and non-guardian people to make decisions for the individual is wrong. It is intrusive and removes the power from family members who are guardians and individuals who are high functioning that are their own guardian. DDS already has too much power and in my case has abused it. Thank goodness for COFAR the only ones who stepped to the plate to help out while all the paid agencies that are intended to protect the special needs community did nothing!

    Like

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