I have had issues with the group SAIL – Self-Advocates in Leadership (Washington) for some time since I have witnessed this group dis-regard self-advocates who may not agree with the agenda of this group. SAIL has typically had a representative testify every year to various committees in Olympia claiming that all institutions should be closed. SAIL has had consistent messages that oppose person-centered planning with regards to choice of residential setting. This group claims to represent ALL people with disabilities and fails to understand the heterogeneous make up of this population.
This past year the previous Self-Advocacy Coordinator who actually worked for the Arc of Washington (Noah Seidel) took a position in the Washington State Developmental Disability Ombudsman Office. SAIL did not renew their non-profit status with the Washington State Secretary of State and the organization non-profit status expired February 28, 2017 and SAIL administratively Dissolved as of July 3, 2017.
The Arc – Washington State posted a Job Announcement for Self-Advocacy Coordinator on September 19, 2017
SAIL is now run by The Arc – Washington State and the new Self-Advocacy Coordinator is Cheryl Monk. SAIL is not an independent organization managed and lead by people with developmental disabilities as many are led to believe but is some sort of committee within The Arc- Washington State.
There are other Self-Advocates in our state that do not promote the same agenda as the members of The Arc – SAIL. These self-advocates have a variety of experiences and want to preserve choice for everyone.
One such self-advocate is a young man who lived at Fircrest for 6 years. He moved to supported living during March 2016. Even though he has a guardian, it was his choice to move and he has worked with his residential team, community, family, friends, employer, job coach and healthcare providers to make this transition a success. The supports are critical for him to remain in supported living and the collaboration is essential to make it all work.
But he hears things and picks up on what goes on in the community. When he hears news about Rainier or Fircrest closing, his anxiety spikes. While at Fircrest he heard talk about this very often and he had lived at Frances Hadden Morgan Center prior to it’s closure – an experience that was traumatizing for many. The threat of losing his home again was a real threat while he lived at Fircrest.
This is his message to our legislators – he will not be testifying as a self-advocate in front of legislative committees but his message is just as important as those who belong to The Arc – Washington
This post has offended some self-advocates. The militant activism by some DD Self-Advocates is cause for concern. The lack of ability to understand that others have different needs and desires, that caregivers, friends and family members of those who require intensive and extensive support needs are valuable as advocates for the people they support are major problems.
It’s very unfortunate that those self-advocates who refuse to collaborate with other advocates have a persecution complex against those who advocate for better services and the funding to support those services. Those who advocate with and for people with IDD are not advocating from a “pro-institution” position but from a “pro-person centered planning” position. There is no ulterior motive to pit one group against another – we’re all in this together.