COFAR blog

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.