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- December 11, 2019 Create Date
- December 11, 2019 Last Updated
In August 2019, Elizabeth Pell concluded her evaluation report on the Supported Decision-Making New York (SDMNY) project’s New York City pilot program site. The evaluation was guided by four key research questions:
1) What concerns or advice led family members of people with IDD to consider or become a guardian?
2) What influenced family member and guardian adoption of SDMNY?
3) Has the SDMNY process in this pilot addressed or reduced concerns that led family members to become or to consider becoming a guardian?
4) Has participating in the SDMNY pilot affected or changed the individual with IDD?
The report includes reflections from key Hunter/CUNY staff on their experiences, challenges, and recommendations for sustaining and expanding SDMNY adoption. Relevant literature and public material on SDM and SDM pilot evaluation reports were also reviewed and included in the report. Ms. Pell also surveyed 20 family members of decision-makers participating in the New York City pilot programs.
Key findings from the report include:
- Participating in SDMNY was associated with increased self-advocacy, greater self-confidence, a wider array of experiences and trying new things, reduced anxiety, and greater happiness in people with IDD.
- Participating in SDMNY was associated with reduced concerns that may have led to guardianship petitions for most potential guardian family members.
- Participating in SDMNY was associated with removal of stereotypes about people with IDD in facilitators who engaged in the SDMNY training and experience.
- Family members participated in SDMNY because supported decision-making aligns with their values and expectations of how to treat their adult family members with IDD: respecting their voice, encouraging them to advocate for themselves, and supporting them to have more control over their own lives.
Elizabeth Pell has been an advocate for people with disabilities and older adults for over 35 years, ever since she began work at the Alabama Federal Court Monitor’s office assessing and reporting on the state’s compliance with Wyatt v. Stickney court orders. She has served as Director of Policy Advancement for The Arc of Massachusetts as well as Policy Associate with the Human Services Research Institute (HSRI), in addition to supporting adults with intellectual and developmental disabilities to move from a state institution into community-based settings at the Center for Public Representation. She holds a Master’s Degree in Social Work and a Bachelor’s in Health Care Management, and she currently resides in North Carolina.