"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

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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 individualdriven 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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