"Self-Advocates Challenge Disability Organizations"
Below are two letters from Chester Finn, Chair of Self-Advocates Becoming
Empowered (SABE). In the February 2 letter SABE announced that it would not
join an upcoming disability conference because of a lack of respect shown toward
self-advocates. In the February 14 letter SABE further explained its
decision not to join the conference and challenged other disability organizations to
reform their advocacy. ADAPT and NCIL have signed a solidarity pact with
SABE and urge other organizations to support SABE's efforts.
Jonathan Young
JFA Moderator, AAPD
=====================
February 14, 2005
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
======================
February 2, 2005
Dear Self-Advocates and Friends:
I am writing to let people know about a decision that SABE made about a
conference that will happen this Fall in Washington DC. The group that is putting
it on is called the Alliance for Full Participation (I'm going to call them
AFP) and the name of the conference is called the Summit: Many Voices, One
Vision (I'm going to call the conference the Summit).
The AFP asked SABE to work with them a little over two years ago. To work
with them, we needed to come up with $5,000. We didn't have the money, but the
AFP said they would waive the $5,000 fee (this means they would not ask for
the fee). We started to work with them. We received a letter from AFP in
January asking for the $5,000. When we asked them for clarification, the AFP said
they did not waive the money and they expected us to pay them the $5,000. To
us, we believe that the AFP went back on their word.
The executive committee met twice and decided that SABE will no longer be a
part of the AFP and SABE will not participate in the Summit because of the
ongoing problems of not being treated with respect and because they went back
on their word.
What kind of problems did we have? There were three major problems. First,
some of the AFP members were not respectful toward the SABE board members. We
did not feel like we were really being heard. This was an ongoing problem.
For example, people were not talking loud enough on conference calls. One
person made a cell phone call during the meeting and talked so loud that we could
not here the conversation. They used professional language and
had side conversations that got in the way of the conference call. They
talked over the self-advocates and interrupted us. Each time these things
happened, we spoke up. They stopped doing it for awhile, but then they would go back
to their old behavior.
Second, our level of participation was not as interactive as what SABE
wanted. We participated at the request of provider and professional agencies to
meet objectives that were decided by these other agencies. There was some
shared decision-making, but that happened after the big decisions were already
made by these other agencies. For example, panels fell into one of three major
areas. These areas were decided by the other agencies. A committee made up the
topics for the panels. The majority of the committee members were people
from professional or provider agencies. Some of the proposed panels were
dropped. When this happened, SABE suggested two new panels and they were accepted.
Third, some of the AFP members decided to not honor our verbal agreement and
requested the $5,000. Let me make something clear. It was not about the
money. It was about how the AFP asked for the money. The decision to ask for the
money was made by a few AFP members and not by all of the AFP members.
The members who asked for the money acted as if everyone who is part of the
committee made the request. They also pretended that we did not have a verbal
agreement. The AFP could have talked to us during our monthly conference
calls to let us know that they needed the money or that they needed to have our
verbal agreement in writing. Everyone knew that SABE was trying to find ways
to contribute money to the Summit. Yet, they never recognized our attempts.
We feel that the Summit will not look at the real problems and issues that
are facing people with disabilities. I hope that you will stand by SABE and
support our decision to not participate in the Summit.
Sincerely,
Chester Finn, Chair
Self-Advocates Becoming Empowered
# # #
=====================
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