Jackie Ceonzo of SNACK NYC recently raved about the work that many families on Long Island are doing for "Self-Direction in New York" in the OPWDD system. Jackie introduced me to Maggie Hoffman of the New York Self-Determination Coalition (NYSELFD), and they published their guide last year as a GREAT roadmap for families new to the Self-Direction world in New York:
"The Coalition is an ad hoc group of parents and professionals dedicated to promoting self-determination as an option for persons with developmental disabilities who require support through the New York State Office for People with Developmental Disabilities. The Coalition works to promote positive system change to bring about public policy reform, financial integrity, and ultimately, increased satisfaction for people with intellectual/developmental disabilities. NYSELFD members also mentor parents who have questions about self-directed services."
Susan Platkin, M.D, is a founding member of New York Self-Determination Coalition, and a member of its Advocacy Committee. Her daughter Ruth, 31, has I/DD as well as bipolar disorder. Over the past 25 years Susan has advocated on both state and local levels for the inclusion of children and adults with disabilities in their schools and communities. Most recently she has served on OPWDD work groups and committees addressing issues in self-direction, health, and managed care
In combination with Jo Anne Schneider's "Report on NY Housing - Intellectual and Developmental Disabilities", and OPWDD's "Self-Direction Guidance for Providers", we are now seeing roadmaps in New York State Self-Direction for: