COFAR blog

A problematic bill that would have authorized Supported Decision Making (SDM) as a substitute for guardianships of persons with intellectual and developmental disabilities (I/DD), died at the end of the just-completed two-year session of the state Legislature on Tuesday.

The bill (S. 3132) had passed the Senate in November and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to a remaining “informal” session of the House where it could have been approved on a voice vote, without debate.

As we noted in our previous post, the bill lacked provisions to protect the rights of persons with I/DD and their families and guardians. Last month, we urged the staff of the Ways and Means Committee not to send the bill to the House for final passage.

The bill, which would replace guardianship of individuals with informal teams of “supporters,” will most likely be reintroduced in the new two-year legislative session, which began yesterday (Wednesday). Unfortunately, our guess is that the proponents of SDM will file the same piece of legislation that they have filed several times previously without including our suggestions to improve the bill.

Under the bill, SDM “supporters” would help individuals with I/DD make key life decisions, including decisions about their care and finances. Most people with I/DD 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.

In our view, however, a key piece missing from the SDM legislation so far has been 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.

The SDM legislation assigns the role of the “decision maker” to the person with I/DD. The SDM bills submitted each legislative term thus far have drawn no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD. As a result, we think the legislation presents a potential for financial exploitation of persons with I/DD.

In that regard, we pointed out to the committee that the bill needed a provision prohibiting providers from being involved as SDM “supporters” in helping individuals make “decisions” about services the providers offer.

As we noted, we think SDM is a concept that needs to go back to the drawing board. We would be happy to work this time around with legislators and SDM supporters in drafting a bill that contains the safeguards we’ve noted here and in our previous post.