Expanding the Opportunities for People with Disabilities to Exercise Power and Control

The representatives of eleven national organizations that forged a common vision for full participation at the Alliance for Full Participation Summit 2005 included many people from the service providing sector. They, together with people with disabilities, family members and advocates, called for two fundamental changes having to do with power and control:

  • Public funds expended on behalf of people with developmental disabilities must be under their control and direction and, for children and others who need it, their families and trusted friends
  • People with disabilities must be part of all planning, governance, leadership and implementation of the programs that affect us. As SABE has so aptly stated, "Nothing about us without us."

Shifting the control over the use of public funds into the hands of people with developmental disabilities with support from their families and friends represents a fundamental shift in the role of agencies and support providers.

First, there is the issue of role – being really clear about what your role is. If you are not a person with a disability and you have a role to play in supporting their lives, you need to be real clear about the fact that you are in service to people with disability… There are moments, as the movement evolves, particularly now in critical times, when mentorship and coaching is really, really critical. I see some of my colleagues frightened. They are not really clear about their roles.

Bill Bowman, Santa Ana CA, CEO, Regional Center of Orange County

If the money followed the person, people would be able to choose the people they want to work with them, the people they want to support them.

Tia Nelis, Founding member, People First of Illinois