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BOSTON (State House News Service) — A parade of self-advocates, parents, lawyers and others went before the Judiciary Committee on Tuesday to press lawmakers to formally enshrine in law an arrangement that aims to empower people with disabilities and elders to make important life decisions with the help of trusted advisers.
Legislation (H 1485) filed by Reps. Michael Finn and Sean Garballey would establish a legal framework for individuals with disabilities and elders to make their own decisions with the aid of people they trust using a method known as supported decision-making (SDM). The Senate version of the bill (S 109) filed by Sen. Joan Lovely was heard by the Committee on Children, Families and Persons With Disabilities last month.
The concept of supported decision-making -- an arrangement in which people with disabilities or cognitive limitations can designate a person or people to help them make their own decisions with support rather than having someone else, often a legally-appointed guardian, make decisions for them -- has been piloted here since 2014.
"Everyone uses SDM every day. Even all of you sitting here today will be using SDM. It is hard to believe, but everyone uses SDM in their life -- friends, family, coworkers, we all have to talk to somebody about something," Kim Plaut, a board member of the self-advocacy organization Massachusetts Advocates Standing Strong, told the Judiciary Committee. "Today, you guys will sit together and decide whether or not to pass this bill. That is SDM; talking to each other, making a decision in your lives. Please pass the supported decision-making bill so that we have that same opportunity as people with disabilities to make decisions in our lives."
Bill backers told the committee that supported decision-making, which the Mass. Developmental Disabilities Council describes as "an alternative to guardianship that allows an individual to make decisions about his or her own life with a team of chosen supporters," does not take guardianship off the table as an option.
Barbara L'Italien, the former state senator who is now executive director at the Disability Law Center, told the committee about conversations she had with former Rep. Tom Sannicandro, a lawyer who specializes in estate planning for families with children with special needs, around the time that her son with autism was turning 18 years old. She said she thought her son would benefit from some guidance, but that guardianship "felt so heavy-handed, so over the top, and so unnecessary for my son."
"For my son, having the opportunity to weigh in on issues around his health, his finances, his housing, his employment, his social relationships is critically important and central to his sense of wellbeing. And so the thought that that would be taken away, in part or in whole, just did not make sense. So we did not seek guardianship," L'Italien said. "However, we are -- my husband and I are -- part of my son's life every single day and try to help him. But he leads the way, and that's the way it needs to be. And so I really believe that we have a gaping hole here in Massachusetts, having an all-or-nothing approach to supporting and assisting folks."
While some of the people who testified gave examples of having a parent act as a decision-making supporter, supporters do not have to be relatives and a person can have a team of supporters who each advise on a particular subset of issues.
Massachusetts Advocates for Children Executive Director Anna Krieger told the committee that the bill will do a few important things: it will make supported decision-making more accessible by requiring schools and courts to mention it as an alternative when discussing guardianship, it will clearly define the roles of a supporter, and it will establish rules for what must be included in a supported decision-making agreement.
"It also includes -- and this piece is maybe not the most exciting and glamorous, but really important -- a liability shield for third parties who are relying in good faith on the agreement. And we know because we do lots of training of hospitals and other places that until we have a protection like that, it's just not going to be embraced on a large scale," Krieger said.
Maura Sullivan, senior director of government affairs and health policy at The Arc of Massachusetts, drew on her experience teaching at medical schools in Massachusetts and told the committee that it will take a state law for supported decision-making to really catch on.
"Last year when the bill passed unanimously through the Senate, I had requests from health care professionals to provide trainings. And that was until I answered their first question, 'is it law yet?' And when I said, 'no, but it's currently being used,' there was no longer interest in being trained," she said. "A state law will be the only way to fortify this worldwide self-determination and human rights movement."
Supported decision-making legislation that Lovely filed last session won a favorable report from the Children, Families and Persons With Disabilities Committee and was passed unanimously by the Senate last November. It got to the House Ways and Means Committee with less than two months left in the session and did not re-emerge.
The session before that, the Children, Families and Persons With Disabilities Committee redrafted and advanced House and Senate versions of supported-decision making bills. In the Senate, the bill died in the Ways and Means Committee, while the House granted initial approval to its bill but took no further action on it.
Written by Colin A. Young/SHNS
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