Barb Sapharas, a leader of the Sibling Leadership Network (SLN) and Ohio SIBS, has worked in the field of developmental disabilities for over 37 years. Her youngest brother, Nick, had cerebral palsy and needed total supports. She used person centered tools to enhance his quality of life and support his right to make informed decisions throughout his life, including at the end of his life. Her life experience as a sibling has promoted her passion for supporting people to share their own voice and be heard in all aspects of their life.
Barb represented the SLN at a Symposium on Supported Decision-Making in Washington, DC, on October 24, 2013, with 70 invited participants representing the legal community, self advocates from a variety of organizations, families, professionals in the disability community and the provider community. Supported Decision-Making is a model of legal support that emphasizes everyone’s right to make his or her own decisions, including seeking out any kind of support that may be appropriate.
The Plenary Session was about the Jenny Hatch Case, the young woman from Virginia who won the right to live and work where she wants. The Quality Trust http://www.dcqualitytrust.org/index.shtml has developed a website (www.jennyhatchjusticeproject.org) to coordinate and produce resources to address the legal, policy, research, and practical issues related to decision-making and support for people with disabilities and their families.
The day’s activities revolved around the 5 core principles of the Jenny Hatch Justice Project:
- Everyone has the right to make their own decision—to choose where to live, where to work, what to do and who to see—to the maximum of their abilities.
- Everyone has the right to ask for help in understanding the situations and choices they face, so they can make their own decisions.
- Laws, regulations, policies and day to day practices must promote and protect people’s right to make decisions, with or without support.
- Health care, legal, support and other professionals and practitioners must recognize and respect people’s right to make decisions, with or without support.
- Researchers must develop evidence-based research to assess the impact and applications of Supported Decision-Making.
The Jenny Hatch Justice Project reflects these values by protecting the rights of people facing or in undue guardianships, advocating for policy change to increase the use and acceptance of Supported Decision-Making, providing education about Supported Decision-Making, and promoting research on Supported Decision-Making.
Judge Kristen Glen reminded attendees of the Symposium that everyone has the “duty” to accommodate while people have the “right” to accommodations to support decision-making. The Quality Trust has committed to sharing information from the Symposium and hosting an annual invitational symposium on this topic.