SAIL – (Self Advocates in Leadership) is The Arc – Washington State

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.

SAil is not registered with Wash state

Facebook clipping dated August 28, 2017

The Arc – Washington State posted a Job Announcement for Self-Advocacy Coordinator on September 19, 2017

Sail Coordinator

Self-Advocacy Coordinator – The Arc – Washington State

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.

SAIL coordinator Cheryl Monk

 

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

 

Addendum:

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.

Ivanova says I am wrong about The Arc

SAIL – Self Advocates in Leadership

SAIL headerWe hear much about Self-Advocacy and there are many trainings out there for people to learn to become self-advocates.  This is part of becoming more independent and able to make choices.  Yet, these trained self-advocates are only a minor part of the population of people with intellectual and developmental disabilities.

The agenda of many of these self-advocacy organizations may actually be against services and choices that many of their peers would advocate for.  The problem is that the peers who are not involved in these self-advocacy trainings (for a variety of reasons) are not able to communicate thier needs and choices in a typical manner. Therefore, the majority of people with intellectual and developmental disabilities are not represented by these self-advocacy groups.

 

Sail 2018 legislative agenda

When trained self-advocates voice their agendas and state that this is what people with IDD advocate for, they mislead our legislators and policy makers.

Again, it is important to understand the disability of intellectual AND developmental disabilities – by the very nature of the disability the people affected by it are, in most cases, unable to communicate their needs and choices to those who do not know them.  The people with IDD may not even be aware of or care about the issues that the trained-self advocates choose to concentrate on.

Yesterday I decided to take my son to a SAIL (Self Advocates in Leadership) meeting in Seattle.  My son is aware that I go to our state capital and communicate with people in our government.  He is aware of some of the names that he hears me say and gets excited when I say I am going to meet with one the legislators he has heard of.

I told him that we were going to a meeting for people with disabilities.  I have no idea if he understood what I was even talking about because he doesn’t really consider himself “disabled” or needing any type of special adaptation or accomodation.   He knows that he’s not able to do some things that his siblings do – such as drive  – but he’s totally fine with that and if you asked him if he wanted to learn to drive he would crack up laughing.   My son accepts how he is and is happy.  He has been disabled his whole life and his reality is that he does things differently than his typical siblings.  He is aware that his siblings do things that he doesn’t do  – but that’s totally okay with him becuase he is able to do the things that are important to him.  In that respect, they are all the same.    He is extremely happy with his life!

So the topics and discussions at the SAIL meeting were of absolutely no interest to him. Due to the length of the meeting and total lack of interest on my son’s part, we did leave the meeting early since it was also clear that his noise level and interest in other things besides what was being discussed were extremely distracting to at least one of the speakers.

One speaker, who happens to be on the Seattle Commission for People with Disabilities, appeared very disturbed by my son.  The speaker had to stop and complain several times to one of the meeting co-chairs about the distractions and even said that he could not talk with such distractions.  After about the 4th time this speaker started to talk it was very clear that he was getting agitated by my son’s noise but the co-chair told him to just keep talking and not to worry about the “distraction” (my son’s noise)

When my son kept trying to look at his You-tube videos or listen to Pandora or ask Siri about various people he knows, he would either get very excited and laugh or get angry with me for trying to encourage him to be quite.  He then started focusing on the time and saying “we will leave at 3 o’clock” for about 45 minutes and then we did leave at 3 PM.

It’s too bad because I think SAIL did discuss a topic that my son does have an opinion about – that of the intermediate care facility.  He is adament about these communities staying open and providing homes and care to those who need to live there.  This is something that he does understand from his experience – an experience that most in that room did not have – or at least not in recent years.

My son shows great concern about Fircrest (the ICF/ID in our neighborhood and where he lived for 6 years) closing.  He can name the other Residential Habiliation Centers in our state that are often in the news with regards to funding cuts and closure.  He did live at Frances Haddon Morgan Center (FHMC)for 1 year but was able to move to the RHC in our neighborhood prior to the closure of FHMC.  My son often asks “What happened to Frances Haddon?”

It is clear to me that this self-advocate meeting was meaningless to my son yet he is one of the many who need advocacy.  It’s shameful that the agency that is geared towards self-advocacy is unable to accommodate the needs and opinions of those who most need an advocate and fail to see the broad spectrum of needs and choices of the population.

I’m really curious how these self-advocacy groups work with people similar to my son and how they reach out and learn what issues are important to them?  Or is this population forgotten and silent when it comes to advocacy?

 

 

 

Guardians are not the “bad guys”

As a parent and guardian of my young adult son with complex developmental disabilities which include an intellectual disability, I am continually made aware of the “fact” from trained self-advocates that my opinion has nothing to do with what may be best for my son and that, as a guardian, I am only self-serving.  Also, since I do not have a developmental disability myself, I have no knowledge of what it is like to live with a developmental disability – more specifically an intellectual disability.

I fully support trained self-advocates in their mission to advocate for a meaningful life experience and to shape public policies to which affect the lives of people with developmental disabilities.  I do not believe that the trained self-advocates have a full understanding of the needs and supports that people with complex, profound or intellectual disabilities (IDD) would choose.  I also do not believe that these trained self-advocates understand the issues of needing a caregiver 24 hours a day to assist with ALL aspects of daily living and how the guardian is involved in helping a person to have a meaningful life experience.

The legal guardian has a court-ordered responsibility to speak on behalf of and in the best interest of the person for whom they represent.  The guardian, together with other caretakers, and the person needing the supports work as a team and the guardian can be the spokesperson for the person with IDD.

I understand there are many people with IDD who are able to speak up and advocate for themselves and ask for what they need and that’s great. Unfortunately, just by definition of this particular disability,  only the people with the characteristics of “mild” ID may be able to live independently with minimal support and/or intermittent support during times of uncertainty.

Unless trained self-advocates are providing the day in and day out, 24 hour care needed by the people who experience  the “moderate,” “severe,” or “profound” characteristics of IDD, they have no concept of the needs, supports and choices that these people would make and have no right to speak on their behalf.  Since by definition, this population is unable to advocate for their needs and supports, the guardians, caretakers, family members, community members, healthcare providers, and friends who know the person best are the the most appropriate advocates for this population.

Denying guardians participation in advocacy on behalf of the people they care for is an act of discrimination against this population.  The slogan “Nothing about us, Without us” includes the guardians when they are speaking in the best interest of the person who they have the legal responsibility to make decisions for.

The table below clearly differentiates the severity categories in the classification of those diagnosed with intellectual disability.

clinical characteristics of Intellectual Disabilities

This discrimination is practiced by many organizations and advocates who claim they are advocating for those with disabilities.  In the response I received from Alex Clardy, Legislative Assistant for Seattle City Councilmember District 1 Lisa Herbold, it is clear they do not understand how this population communicates and the discrimination practices greatly limit the ability of the policy makers to fully understand how these issues will affect the people who work these jobs.

“The PwD Commission received no comment opposing the elimination of the subminimum wage certificates. Some people contacted Councilmember Herbold’s office concerned that people need the subminimum wage to get jobs.  Yet, no people with disabilities contacted Councilmember Herbold’s office to say so.  Since the PwD Commission, through their individual lived experiences, can speak to these issues best, Councilmember Herbold asked that I share with you excerpts from the PwD Commission letter that outlines several specific points as evidence against these concerns specifically and opposing the subminimum wage as a policy. “

( I will comment on the so-called “evidence” which the Seattle Commission for People with Disabilities (PwD Commission) provided to the City Council in another blog post)

It needs to be noted that there are no representatives with IDD on the PwD Commission and they totally disregard the guardians and the collective experience of the guardians, caretakers, friends and community members of people with IDD.  The PwD Commission is exclusionary when it comes to people with IDD.

Another group – Self Advocates in Leadership has the following items in their 2018 legislative agenda:

Sail 2018 legislative agenda

Are they suggesting that supported decision making replace guardians?  Is this logical for the people who live with severe forms of IDD?

 

 

Washington State Payments to The Arc of Washington

The Arc of Washington and other Arc chapters in our state receive Washington State funds from the Developmental Disabilities Council (DDC) each year for salaries, benefits, travel and other expenses.

This is disturbing for many reasons but particularly because they receive state dollars for “advocacy” yet they do not advocate for a full continuum of care for our many citizens with developmental disabilities.  In fact, their advocacy actually causes harm to many with the highest support needs.

We need a full disclosure regarding their advocacy and a statement regarding the fact that they do not advocate for the families and individuals with high support needs who choose to live in supportive communities, campus communities or in congregate care communities.  The lack of disclosure together with the impression given that The Arc is the spokesperson for people with developmental disabilities has caused many problems.  If there was disclosure and their biases against true choice as written under Olmstead* were clear, I believe we would see a much more united and effective advocacy movement to better serve the continuum of needs.

 

DDC Payments to The Arc of WA – table of payments for the dates August 2010 – July 2011

DDC payments by category

 DDC payments by program

*Olmstead – see 1999 US Supreme Court Decision of Olmstead