Self-Advocates Becoming Empowered (SABE) Take A Stand Against the Alliance for Full Participation Not Fully Including Self-Advocates in Decision Making of Conference (with follow-up resolution) - By Chester Finn, SABE Chairman

February 14, 2005 – SABE

TO:             The Steering Committee of the Alliance for Full Participation (AFP)
From:           Chester Finn, Chair
                   Self-Advocates Becoming Empowered (SABE)

I want to acknowledge and accept Steve Edelman's apology for his conduct on the last conference call.  However, this does not mean that SABE will return to the AFP and participate in the Summit.  We stand by our decision.

I want to make clear that our decision to withdraw from the AFP was not about the money or about what led up to our withdrawing from the AFP.  Our decision was about our philosophy. SABE supports self-advocates across the nation to speak up in order to gain their independence.  Our mission is to ensure that people with disabilities (a) are treated as equals, (b) are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves, and  (c) are given opportunities to learn from mistakes, as everyone else.

If the Alliance or individual organizations really want to work with us, they need to do the following:

1. AAMR needs to stop using the word mental retardation and change their name.  SABE worked with the President's Council for People with Intellectual Disabilities to change their name.  In the Civil Rights movement, the "N" word was hurtful to African Americans.  Likewise, the "M" word is offensive to individuals with intellectual and other developmental disabilities.  SABE challenges AAMR to educate their members in order to change their organization's name.

2. The Arc needs to stop supporting sheltered workshops and other places like sheltered workshops that do not enable people with disabilities to transition into real jobs for real pay.  SABE is not opposed to people learning the skills they need for a trade. However, we do not support the piece rate practices.  SABE challenges Arc to convert sheltered workshops into true transitional places that create real work opportunities.

3. NASDDDS needs to work with state directors of developmental disabilities services on how they can financially support self-advocacy groups and work with them on issues related to service delivery. I know this can be done, by experience. Because the New York Commissioner has me as his assistant and works with our state self-advocacy organization, New York self-advocates have a strong base to advocate for their members.

4. NACDD needs to work more closely with self-advocates and support local and state chapters by fiscally supporting the issues that self-advocates identify as important.  SABE challenges the state developmental disabilities councils to find ways to support self-advocacy through real fiscal support, rather than through projects where non-self-advocacy organizations can obtain the money.

5. NAPAS needs to work with its members to form partnerships with self-advocacy chapters around issues related to moving people out of institutions and nursing homes, voting, abusive guardianship practices, and staying in the community with the right support.

6. AUCD needs to work with its members to make their research truly participatory and relevant to the needs of people with disabilities and families.  SABE challenges the AUCD members to train people with intellectual and other developmental disabilities to gather data, summarize the findings, and learn other skills that would enable them to become research assistants. We challenge AUCD members to write research papers that include feedback from people with disabilities and their families.

7. ANCOR needs to promote individualized residential services and supports rather than segregated group homes where service providers have the control over people's day-to-day lives.  SABE challenges ANCOR members to support self-advocates who want to move away from a provider-driven service system to an individual-driven service system. Individuals' right to have control over all aspects of their lives need to be respected.

8. The Council needs to have more people with intellectual and developmental disabilities on their review teams in order to make sure that the people who reside within provider agencies really have the lives that they want and have a good quality of life.  SABE challenges The Council to reexamine how their accreditation (certification) process really upholds individual civil rights.

9. UCP needs to work more closely with their local and state members to get a better understanding of needs and choices of the individuals working within UCP agencies. There is a big difference between what the national UCP advocates for and what filters down to local and state UCP agencies. People with disabilities have a better idea of what their lives are really like and are in a better position to inform the national UCP about the real issues.

10. NADSP's issues related to better working conditions and better pay are important.  SABE supports you in these issues.  Our challenge to you is to work alongside people with disabilities and families to promote their issues.

I feel that this is a challenge that we are putting out to you.  SABE is willing to work with you on these issues.  If you really believe in our issues and you want to win back our trust, you will join us at the table in achieving the goals of closing institutions and nursing homes, self-determination, individualized services, self-directed supports, and money following the person.  All of these goals are related to making real lives for persons with disabilities.

We talk so much about Dr. King's dream. We have an opportunity now to make this dream happen in our lives.  If we really want to show the federal government that we stand and work together, we will make these goals an everyday issue not topics that are discussed in three days or during one conference.

It is important for us to move ahead.  We need to work on the passage of the DD Act and MiCasa.  We need to work on issues related to Medicaid and Social Security. If you believe in working with us, you will take our challenge and work with us on the issues and goals that I outlined in this letter.

Sincerely,

Chester Finn, Chair
SABE