Home > Uncategorized > Update: Problematic SDM bill dies at end of legislative session

Update: Problematic SDM bill dies at end of legislative session

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.

  1. Joan D Sheridan
    January 5, 2023 at 2:06 pm

    I AM JUST GLAD YOUR ORGANIZATION IS WATCHING THESE BILLS

    Like

  2. Barbara M Govoni
    January 5, 2023 at 3:37 pm

    This is Good news, and this Bill should Not be reintroduced at anytime in the future.
    As a mother of a 41 year old son with Down’s Syndrome, I find it incredibly perplexing that people with little to No experience with individuals with ID, can make such Rediculous proposals. At the least, parents should be included in this process, with obvious input.

    I’m sure there are Legislators who will scream “inclusion”, but this very dangerous proposal has Nothing to do with inclusion.I’m quite sure I am Not alone in wanting absolute power over a potential Medical or Financial decision, which my son would be unable to make , just to name two examples.
    If those in power claim to care about individuals with ID, then listen to reason, please!
    Barb Govoni
    Hampden, Mass.

    Like

  3. Karen Brajak
    January 5, 2023 at 4:04 pm

    I was the legal guardian over my daughter who was 29 and autistic and unable to make any decisions. Everything was fine until DDS got involved. My daughter was sent from MGH to Hogan and I had to go to court because I did not want her at Hogan. My daughter WAS able to voice this. She had been there before and did not want to go back there. She had nightmares about it. The court took my guardianship for 3 months and appointed someone to be temporary guardian and make decisions about something she knew nothing about. She consented for my daughter to go to Hogan and my daughter was dead in three weeks. She died of a heart attack from all the drugs they pumped in her to subdue her.

    Like

    • Anonymous
      January 5, 2023 at 4:56 pm

      This is so sad I don’t know what to say.I wish this situation could be better known

      Like

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