Supported Decision-Making Is about Us

Massachusetts Advocates Standing Strong (MASS) is an organization made up of self-advocates across Massachusetts. It has a board of self-advocates that make the big decisions about how the organization runs. There are five regional offices where regional coordinators and self-advocates from that region work together to ensure self-advocates have opportunities to live their lives the way they want to.

MASS’s mission is to “empower self-advocates through education, so we make choices that improve and enrich our lives.” MASS believes that everyone is important, that everyone has the same rights, that rights and responsibilities go together, that everyone should be treated equally, that people should have the same opportunities to make their own decisions and choices, and that people should have the support they need. MASS self-advocates are committed to always speak out for themselves and each other, to stand by each other, and to make things better in our lives.   

Founded in 1998, MASS is very connected to numerous other disability-related advocacy groups in the state and works well with all of them on advocacy issues that impact self-advocates’ lives.  So, we both were very surprised to learn that a group of lawyers was holding meetings to discuss creating and filing a bill that would create a new alternative to guardianship called supported decision-making. The bill aimed to give people with disabilities in Massachusetts another option for making their own choices about their lives, which is a core part of MASS’s mission. Unfortunately, they began meeting to discuss this bill without the input of the very people whose lives it would impact: self-advocates.

Some members of that group must have been aware of MASS. Yet they didn’t invite self-advocates to their meetings about a bill designed to help self-advocates. What that group didn’t know was that while they were holding their meetings, MASS was already actively working on supported decision-making. 

MASS had formed a group they called the Supported Decision-Making Task Force. Like MASS, the Task Force was run by self-advocates but had support from lawyers and other organizations, including the Disability Law Center, the Institute for Community Inclusion, and the Harvard Law School Project on Disability. The self-advocates knew that different people had different experiences with making choices. They wanted to get input from self-advocates across the state to ensure different voices were heard on this issue. So, the Task Force organized and held a statewide conference.

MASS members from every region attended and discussed supported decision-making and shared their ideas. These discussions showed that self-advocates both with and without guardians face barriers to making their own decisions, and that even supporters who weren’t guardians can get in the way. Many self-advocates shared that representative payees and direct care professionals also got in the way of self-advocates making their own decisions.

The Task Force did follow-up interviews with several self-advocates who attended the conference to learn more about their stories. The threat of guardianship was sometimes a problem. One interviewee shared that her service coordinator threatened to go to court to get guardianship if she didn’t choose a certain place to live. But the interviews also showed that self-advocates face many different kinds of barriers for even small decisions. For example, one interviewee shared that despite not having a guardian, he is not allowed to decide when he goes to bed. Despite raising this issue many times, his staff “listen but they don’t hear me.”

Later, when the group of lawyers shared a draft of their bill with MASS, the Task Force decided to hold regional forums to gather ideas from the self-advocate community about what they would want from a new supported decision-making law. For example, some forum participants believed that written supported decision-making agreements could help them get more respect for their decisions from people in their lives. Others had their doubts. Some felt that special written agreements would make it seem like self-advocates could not make decisions on their own. Many participants said it would depend on what an agreement would look like and they would want to see one before deciding how they felt about if it work.

The Task Force then decided that it would be necessary to have plain language materials for self-advocates to make agreements that people could really understand and use. The Task Force looked at forms and materials used by 8 different states that had already passed supported decision-making laws. The Task Force developed a couple examples and then field-tested them with 9 different self-advocates. Based on their feedback, the Task Force created several different kinds of agreement templates that could be adapted to people’s needs.

This year, the Task Force has trained peer guides who can assist individuals to use the tools that MASS has developed to make their own supported decision-making agreements. Last month, the Task Force’s first two peer guides helped another self-advocate create an agreement with her mother. She now wants to create another agreement with her respite worker and has plans to try to put together an agreement with her sister after that. In the future, the Task Force hopes that more self-advocates can help their peers put together agreements that work for them.

The bill that the group of lawyers had drafted is called the “Act Relative to Supported Decision Making Agreements for Certain Adults with Disabilities.” Although MASS was able to give inputs only later in the drafting process, MASS supported the bill's passage. Several MASS board members, for example, testified in favor of the bill at legislative hearings. Even though self-advocates weren’t included from the beginning of the bill drafting process, we think that this bill, if enacted, would add an important tool to self-advocates’ toolbox. However, before the close of the 2021-2022 Massachussetts legislature's 2nd Annual Session on July 31st, the legislature failed to do so, although the bill may pass during the legislature's informal session.

There are some ways in which this bill or future versions could be strengthened to make sure that Massachusetts' supported decision-making laws, policies, and programs follow the spirit of “nothing about us without us.” For example, the bill states that the Executive Office of Health and Human Services will create a “training program” for supporters and decision-makers and that the training program will “include trainers with disabilities.” Yet, as we believe the Task Force has amply demonstrated, self-advocates can and should lead the design and implementation of supported decision-making activities. Over nearly five years, Task Force has researched self-advocates’ needs and other states’ laws, has developed and field-tested tools, has educated self-advocates about supported decision-making, and now is empowering self-advocates to work one on one with their peers as guides to make agreements.

In my view, if Massachusetts, or any other place, really wants its supported decision-making laws, policies, and programs to follow the spirit of “nothing about us without us,” then it is essential that self-advocates are not just included but also play a leading role. While supported decision-making, if implemented the right way, can be a wonderful tool to help people make their own decisions with support, if self-advocates do not lead the way, then it will ultimately fail to deliver on its promise.

Anne Fracht is HPOD's Self-Advocacy Associate and formerly served as the MASS SDM Task Force's co-chair.

Chris Griffin is Senior Executive Search Consultant at Bender Consulting Services, Inc, and formerly served as the Disability Law Center's Executive Director.

Hezzy Smith is HPOD's Director of Advocacy Initiatives.