Home > Uncategorized > Supported Decision Making bill needs clarity and safeguards

Supported Decision Making bill needs clarity and safeguards

We’ve recently expressed concerns about “Supported Decision Making” (SDM), a growing movement to restrict guardianships of persons with developmental disabilities and replace those guardians with “networks” of more informal advisors.

In that vein, a bill to promote SDM in Massachusetts (HD.666 in the House and SD.843 in the Senate) does little to alleviate our concerns.

We think SDM can hold promise for some high-functioning individuals, and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.

The problem with the bill is that there appear to be few, if any, such safeguards in it, and the bill provides no standard for determining who might be eligible for an SDM arrangement.

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to help them make decisions about their care, finances, living arrangements and other areas. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.

But the bill skirts the question whether everyone is really capable of making their own decisions in those very important areas. The bill states that, “with support, many people with disabilities can make their own decisions…” (our emphasis). That statement actually says very little.

What the bill does state explicitly is that under SDM, the developmentally disabled individual is the “decision maker” regarding their services and their financial and legal affairs.

But can someone with a profound intellectual disability, for instance, be considered capable of making their own decisions even with assistance from an SDM team? As one public advocacy organization put it in relation to SDM, is it possible for anyone to make their own decisions “if they do not have…an appreciation of the significance of the decision they are making or a reasonably consistent set of values?” 

The bill simply doesn’t address those questions. As a result, it seems possible the assumption underlying the bill is that yes, many individuals are capable of making these decisions even if they have “significantly sub-average intellectual functioning,” lack the ability to communicate, and lack practical living and conceptual skills.

SDM proponents need to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians.

It’s not sufficient to insert a vague statement into proposed legislation that “many people” are capable of making their own decisions. Where does that capability begin or end? What the bill needs to specify is a threshold level of cognitive ability, determined through research, above which SDM would be permissible and below which it wouldn’t.

The problem is that many SDM proponents refuse to recognize that such a threshold level even exists. The American Bar Association, for instance, rejects the use of a clinical standard or diagnosis of cognitive ability in determining whether an individual is capable of making their own decisions.

Little or no protection from conflicts of interest or exploitation

There is also nothing in the language of the bill to prevent human services providers from being placed on the SDM teams — a situation that would seem to set up a potential conflict of interest.

We have seen many cases, for instance, in which family members have made allegations of poor care or conditions in group homes, and the providers have not only ignored the families’ concerns, but have, in some cases, retaliated against the families. In too many of those cases, DDS has taken the side of the providers.

It’s not hard, in instances like that, to imagine the outcome if a representative of the provider and of DDS were on the individual’s SDM team. The family member would be consistently “outvoted” on decisions about the person’s care.

There is, moreover, no provision in the bill for preventing the exploitation of developmentally disabled persons other than a provision that anyone who has reason to believe that someone is being exploited can report that to the Disabled Persons Protection Commission (DPPC). There is not a requirement, however, that the DPPC actually investigate such a complaint or that the DPPC not refer the complaint to another agency such as the Department of Developmental Services for investigation.

There is also no provision in the bill that would provide for regular auditing or other oversight of SDM agreements.

In addition, there is a provision in the bill that appears to offer SDM as an alternative to guardianship even for children. The bill appears to imply that even children with intellectual disabilities would be considered eligible to make their own financial and legal decisions.  We’re not sure that even children of normal cognitive ability have that legal right under most circumstances.

Unfortunately, it appears to us that many proponents of the SDM movement do not want to adopt safeguards or standards, possibly because that process could lead to debate and disagreement that might slow the SDM movement down. We think taking the time to resolve disagreements and adopting standards would ultimately be the best way forward for SDM and for the disabled individuals it is intended to help.

 

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  1. February 22, 2019 at 12:30 pm

    I am a college student, studying Developmental Service Worker program. We studied and discussed Substitute Decision Maker in my Trend and Issues in Developmental services course. According to my little knowledge regarding this topic, a person with developmental or intellectual disability has equal rights with other human beings. We need to respect and acknowledge their values and capacities. Definitely, we need to follow their participation in making important decisions in their life mainly health-related issues and financial areas. A Substitute Decision Maker or family members can provide support in different areas, for taking a decision in an individuals life.
    I also agree with David Kassel’s concerns on Supported Decision-Making bill, i am believing new changes and implementation of this bill help to people with developmental disability. As a student, I learned new pieces of pieces of information from your works.
    Am really appreciate your efforts in publishing this valuable resources to the public and wishing all the success in your future work.

    Thank you
    linju dany

    • Anonymous
      February 22, 2019 at 9:29 pm

      God help us!

  2. gael79
    February 25, 2019 at 8:38 am

    Follow the OMBUSMAN model used for nursing homes and assign an ombudsman to all group homes, indpendent of dds. Perhaps under the DPH. This model works so well for nursing home residents. DDS has a frightening amount of power for the clients it serves. DDS has not carried out investigations according to their own protocol. Some investigators bully the reporter
    DPPC does not have the resources to investigate reports of abuse. If reporters face retaliation, DPPC again, is limited with the investigation and the reporter isnt provided a face to face interview.
    The best bet for.being retaliated against is probably MCAD.
    Please, no guardian changes that eliminate families or other individuals who are personally intetested in the welfare of the individual being serviced by DDS

    • Maureen
      February 27, 2019 at 4:30 am

      I totally agree with David Kassel’s concerns with regarding SDM. How could anyone believe for the most part that families do not have their best interests in their loved ones health and care?
      This SDM would eliminate any or all input by families who not only know their loved ones the most but also who have their best interests . If SDM passes the people we love will get substandard care while the families have no say and sit back and watch providers and DDS ignore important issues of this fragile population . This SDM only makes DDS and DPPC job easier, no accountability of Providers who very often ignore Guardians concerns and dismiss them. where does that leave Disabled Persons? Solely at the decision of Providers and DDS who are known to protect only each other ! Everyone knows that this is a fact.

  3. Gloria J Medeiros
    March 14, 2019 at 12:01 pm

    I completely agree with all that has been stated above by Maureen, gael79, and linju dany. As a mother and Guardian of a special needs daughter, I have had to be sure that she is getting the best care both emotionally and physically, through the years. I so appreciate those who have helped me in the past.
    Thank you Dave, for your continuing commitment.

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