Since the summer of 2017, HPOD has supported a task force formed by Massachusetts Advocates Standing Strong (MASS, www.ma-advocates.org), a state-wide self-advocacy organization run for and by people with intellectual and developmental disabilities, to explore supported decision-making. Along with the Disability Law Center (DLC, www.dlc-ma.org) and the Institute for Community Inclusion (ICI, www.communityinclusion.org) at the University of Massachusetts Boston, HPOD has supported task force members to undertake a statewide, participatory process not only to learn about supported decision-making but also to learn from its members how self-advocates think that supported decision-making can work in their own lives.
The MASS Task Force on Supported Decision-Making members studied supported decision-making for months. Starting with the Autistic Self-Advocacy Network’s (ASAN) Easy Read manual on supported decision-making (autisticadvocacy.org/2016/02/the-right-to-make-choices-new-resource-on-supported-decision-making), members debated core issues and grappled with the policy implications of different approaches. Then, on February 10, 2018, the Task Force organized a statewide consultation to learn directly from its members about the specific decision-making barriers they face, so as to identify the priority areas the Task Force should work on. The Task Force designed its own methodology and questionnaire for collecting this information. Approximately 50 self-advocates from MASS’s 5 regions attended the statewide consultation, and focus group discussions facilitated by Task Force members yielded four key takeaways:
- self-advocates often have difficulty getting others to respect their decisions, even if they don’t have a guardian;
- “supporters” often try to make decisions for self-advocates, even though the “supporters” believe themselves only to be helping;
- representative payees can limit self-advocates’ opportunities to make financial decisions, especially for self-advocates living in group homes; and
- self-advocates who have guardians want their guardians to act as “supporters” instead.
Next, the Task Force followed up on these findings to collect information from its members about the legislative and policy solutions that self-advocates wanted to address these key takeaways. The Task Force designed a new methodology and questionnaire and then organized a series of 4 regional forums in October and November 2018. Task Force members facilitated additional focus group discussions to collect information about self-advocates’ views on legislative and policy solutions, and HLS volunteers including Rosa Lee Bichell (3L) and Lauren Amos (2L) assisted the Task Force by recording self-advocates’ discussions. The regional forums discussions were summarized in a report, revealing that:
- MASS members want new laws and/or policies to promote supported decision-making so that they can have more control over their decisions.
- MASS members want a new law or policy that focuses on providing trainings both for self-advocates on their decision-making rights and also for guardians, representative payees, and supporters on how to support self-advocates to make their own decisions.
- MASS members have concerns that written supported decision-making agreements will not be effective, because others (like parents, providers, and professionals) will either misuse or misunderstand them, especially if there are no trainings for these key stakeholder groups.
At the same time, Task Force members have represented self-advocates’ voice at meetings with other members of civil society working group on supported decision-making interested in pursuing legislative and policy solutions. Throughout 2018, they have educated working group members about self-advocates’ preferences and views and successfully advocated for their incorporation into the group’s reform proposals.
HPOD, DLC, and ICI will continue to support the MASS Task Force on Supported Decision-Making in 2019, when the Task Force plans to organize a statewide conference to report back to its members on its findings from the October and November regional forums and to educate them on how they can become involved in MASS’s future statewide advocacy efforts on supported decision-making.