How to Successfully Involve People with Disabilities in Systems Change Efforts, “Nothing About Us, Without Us”

Mark Friedman (City University of New York), Nancy Ward (Oklahoma Disability Rights Center) 

The pace of change is speeding up in all facets of our lives. The disabilities field is no exception. Driven by dramatic and rapid changes in technology and advances in medicine, most states are currently involved in various systems change efforts. Many of these efforts are funded by the Centers for Medicare and Medicaid (CMS). The most recent guidelines from CMS require the engagement of people with disabilities in these systems change efforts.

The “Nothing About Us, Without Us” rallying cry of the disability rights movement demands a seat at the decision-making table rather than simply seeking people’s opinions after the decisions have been made.

This presentation will utilize the newly developed “Guidelines for Participant Engagement in Systems Change” by Dr. Friedman. Participants will learn the best practices advocacy groups, DD Councils, State DD Offices, Disability Rights groups and University Centers are using to effectively and fully include people with disabilities in systems change efforts. Participants will learn the surprising benefits of having three or more people with disabilities as well as people with more significant disabilities serve on policy-making bodies.

The presentation is based on Dr. Friedman’s national study of people with disabilities serving on policy-making bodies and his work as Subject Matter Expert with the National Center on Advancing Person Centered Practices (NCAPPS). For NCAPPS, Dr. Friedman worked on systems change efforts with the Alabama, North Dakota and Kentucky State Offices of Disability.

Ms. Ward will share her stories and add her extensive experience serving on multiple national, state and local boards and training people with disabilities.

During the presentation, participants will have the opportunity to share their experiences in involving people with disabilities in systems change efforts and their future next steps.