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

Catch 22 – The Arc “issue”

I recently came across an article written by Irene Tanzman on LinkedIn entitled “Advocacy Organization Catch 22” published June 22, 2015.  I would encourage reading this and in addition taking a look at some of the other insightful articles that she has published.  I felt a breath of fresh air when I first read this yesterday.

There are many concerns regarding “The Arc Issue” as I will call it.  In addition to the facts that Ms. Tanzman has addressed it is important to realize that in order for a chapter to call itself “The Arc” that chapter needs to be aligned with the agenda and policies of the national organization.   Every local and state Arc sign an affiliation agreement with Arc US that the chapter will support the policies of Arc US.  if for some reason a chapter does not support a particular position they are to remain silent and not comment.   So, regardless of what is happening in your region or state, your local Arc can only speak on policies that are dictated from the national organization.

The national policy of The Arc US (taken many years ago in the late 70’s and early 80’s) is that “community” is best and ALL people can be served in the “community.”  There are many problems with this policy:

  1. It is outdated
  2. It is not in alignment with the 1999 US Supreme Court Decision Olmstead v. L.C.
  3. It is not person-centered
  4. It does not indicate why they think this is best, or how it will be achieved.

What are some of the solutions?

Arc of Washington State – Question their data and resources

The Arc Washington State recently sent out an alert “Crisis Stabilization Needed in Local Communities.”  While this is indeed needed, the information provided by The Arc Washington is not only incorrect with facts but much is actually fiction.

As a respected advocacy agency which many legislators and community members look to for guidance publishing alerts such as this actually hurt the people The Arc is supposed to be supporting.  Where is the integrity and transparency in their reports?

The Arc states that “On average, only 1-3 beds a month are currently used for any respite.”  The Data obtained from the Department of Social and Health Services Executive Management Information System (EMIS)  dates June 2010 through June 2014 clearly show that the Arc is very incorrect.  Below is a graph of the data obtained from the EMIS.  The average has actually been 32 respite clients per month at Yakima Valley School.

Community Respite in RHCs

The Arc states “The cost for placement in Yakima Valley Nursing Facility is $587 A DAY, much more than a community setting.”  Again, data obtained from the EMIS and from the Office of Chief of Policy and Programs, DSHS Quality Programs and Stakeholders Office Chief, and the Crisis Services Program Manager,   the cost of community crisis respite is $1,166 dollars A DAY as opposed to the average $441 at Yakima Valley School of which only $216.00 is the cost to our state when the Federal Medical Assistance Program (FMAP) is taken into account. (EMIS 2012-2014)

Respite at YVSWhen provided with the actual data, one can see that we need to pass E2SSB 5243 rather than reject it.

This bill does not address anything having to do with respite that people receive in their homes and communities and will not take anything away from them.  It will only provide much needed services and help prevent crisis and family breakdown.

Yes, we all want respite in our communities but it is not happening for various reasons.  Respite can be used for a variety of community outings and opportunities but out-of-home respite is also needed.  I can tell you that if my son had been allowed to have any out-of-home respite at all while living at home on a waiver, it may have saved our family and may have prevented him from being moved into the RHC.  I believe that out-of-home respite is an essential component of the whole respite program and will add to the sustainability of community programs.

Resources:

Data received from the Department of Social and Health Services, Executive Management Information System  June 2010 – June 2014, with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions –http://www.dshs.wa.gov/pdf/adsa/ddd/policies/policy3.04.pdf

Report to the Legislature – December 5, 2011  http://www.dshs.wa.gov/pdf/adsa/ddd/Fiscal%20Status%20Report%20Consolidation%20of%20RHCs.pdf

The Arc wants to eliminate respite care

There is so much that does not make sense but one of the top things with advocacy for people with intellectual and developmental disabilities is that The Arc of Washington is against a bill which will continue to provide much needed respite care for people in our communities.

This graph illustrates the number of community clients who receive care at our state’s Residential Habilitation Centers (RHCs).  SB 5243 aims to maintain Yakima Valley School for residents and respite clients.  The Arc of Washington opposes this bill.  Yakima Valley School serves an average of 32 community clients per month for respite  – without this resource our community members will have much less access to the already minimal respite care available.

Community Respite in RHCs

The Arc of Washington supported the closure of Frances Haddon Morgan Center (FHMC) in 2011.  Frances Haddon Morgan Center had a well respected and much used respite program.  Since the closure of FHMC in 2011, it is clear that the need for respite in other RHCs increased.

Please support SB 5243 and help reverse some of the damage done by the bill in 2011 which caused at least one death and led many other people into crisis.   Advocates should be looking at care, protection, choice and progress – not the opposite.  In my experience, The Arc of Washington is not acting as an advocate.

 

Data Retrieved from Developmental Disabilities Administration

Executive Management Information System

June 2010 – June 2014

 

The count for respite clients for each month is the unduplicated count of clients who accessed respite for the month. 

 2015 Developmental Disabilities Bills of Interest – published by The Arc of Washington State

Alarming? Really?

 

 

Prevent abuse of people with developmental disabilities was the Op-Ed piece in The Seattle Times yesterday written by Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council.  The issues brought forth are not new and I’m wondering why these agencies have not been continually advocating for safe and appropriate care, oversight and investigations all along?  It was clearly evident from the Op-Ed piece Supporting our most vulnerable citizens published in 1999 by these same two authors that these issues were of great concern.  What happened in the past 13 years between these two essays to improve the situation?  Apparently nothing – so what are these agencies advocating for and what is their purpose?

My belief is that these agencies have been led down a misguided path – rather than looking at the person who they are supposedly advocating for they have been advocating for those who gain financially from social experimentations of rapid deinstitutionalization without evidence based studies that this is the best option for some of our most vulnerable citizens.  There seems to be a rule that the data which DSHS and DDD share with these agencies is golden even though it may not make sense.  But because the data supports the agenda of these agencies which are backed by their supporters who will gain financially from this misguided advocacy,   it is used as fact and this is what our policy makers are given to use for legislative purposes.

In my attempts to ask these advocates and other decision makers in our state about the questionable conclusions I have been told may several of the executive directors of Arc chapters in our state that they do not question the information which DDD gives them, they do not ask questions about the sources, they assume the data is correct.

Recently, when I asked to meet with the statewide coordinator of the parent coalitions run by The Arc of King County,  he wrote he had seen my questions and data but did not want to address them.

All I can think is that these people just put their head in the sand and do not want to face reality.  They need to look at the questions asked and answer them, look at the glaring discrepancies and address them – they need to be accountable for their actions and inaction in their advocacy and not blame the legislature.  They are the ones giving the legislature the information and if they give the legislature garbage they will get garbage.

My concern is that many vulnerable people are being hurt by these who claim they care.

 

 

Seattle Times “Opinion”

I want to be hopeful but am afraid that nothing will change.  Even though The Seattle Times published an article by Maureen O’Hagan entitled ” State ignoring abuse at group homes “ and The Seattle Times published the editorial “DSHS must investigate alleged abuse at group homes for the disabled” my hopes of reform fade.  We hear that The Arc – Washington State will be advocating with legislators on this.  The Arc-Washington writes “The basis of the problem lies with DSHS. It takes weeks or months for them to respond to reports of abuse and often nothing happens. The Governor proposes to add funding for more investigators.”

This is just “talk” and will amount to “no action” from The Arc, Disability Rights Washington, Washington State Developmental Disabilities Council and other agencies which receive public funds to advocate for this population.  The history is that they use these funds to discriminate our most vulnerable.   In the name of deinstitutionalization these groups have advocated for community inclusion.  What these groups do not understand is that many of these same people already lived in a community – it may have been a different type of community than what the people who run these organizations may choose to live in,  but it is a community for the people who find it supportive, safe and stable.

The mis-placed and misguided advocacy of these groups is also the basis of this problem.  I know that I am not the only one who has attempted to educate these advocacy groups on the issues of unsafe conditions in these group homes or issues of safety and stability.  These groups have not wanted to hear or acknowledge that there were problems.  They wanted to see that moving people from stable and safe supportive communities to individual homes scattered far from their friends and families to be “included” in community was an experiment that was succeeding. They wanted to see “inclusion” and “integration” work.  I do too – the difference is that I see inclusion as being part of the community – community meaning participating, contributing and belonging.  I believe each person can define what that community is to them and they can make a choice.  The misguided advocates do not allow people to make this choice and have defined “community” to mean something else.  Many times the “community” these misguided advocates force upon people does not lead to “inclusion” but to  ISOLATION and IMPRISONMENT.

This experiment failed – many have been harmed or killed.  It’s time to stop this experiment on unsuspecting people. How many of these people provided “informed consent” to this social experiment?

Where is the advocacy for improved oversight, better staffing levels, better pay for caregivers?  These are critical to improving care, safety and stability for all.  Yes, we need investigations but investigations without action will do nothing except waste more money and cause more harm.

 

 

“Throwaway People”

What happened to The Arc?

Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council (DDC) wrote about the issues very well in the years 1999, 2002 and 2005.  Please read about the advocacy for our “most vulnerable and politically powerless” and voiceless members of our communities. (Ed Holen and Sue Elliott Articles to Seattle Times)  The “Special to The Times” of 1999 highlights issues that have not changed in the 13 years since it was written.

The Arc used to advocate for people with developmental disabilities to have the same basic rights as everyone else – “the right to feel safe in our own home, the right to regular meals, the right to feel like a contributing member of society.”

When did this advocacy change to removing people from their safe homes in supported communities to become isolated?  When did it change to increasing the incidence of crisis oriented care by closing supportive community homes?  When did it change to not listening to the families and guardians of those who cannot speak?  When did it change to discriminate against our most vulnerable – the “Throwaway People?”

I want to know when the identified problems of ” inadequate staff training and compensation, no means of gauging the appropriateness of care, little oversight of such facilities, and no way to bar or punish those who abuse or take advantage of people with developmental disabilities” were corrected.

When were the suggested changes which The Arc and DDC sent to the Governor, the legislature and the Attorney General in 1999 implemented?

  • Allow family or relatives of individuals with developmental disabilities to take civil action in cases of wrongful death
  • Make hearsay evidence admissible involving cases of abuse and neglect of people with developmental disabilities
  • improve client to case-manager ratios (200 clients to one case-manager in 1999 – “the worst in the entire country”)
  • Require annual certification of all providers who receive contracts from DDD and DSHS
  • establish ongoing education requirements for direct-care providers
  • increase provider wages to reduce rampant and constant turnover

“The only way to ensure the basic right is to provide caregivers training and adequate compensation;  state regulators the authority to ensure quality supports and services;  and to call to account people who abuse the system and people within it.”

If you read the advocacy material printed and distributed from The Arc today what you will see at the top of almost any list is to close the supportive communities (Residential Habilitation Centers – RHCs).  This is in total contradiction of what they have written.  This means advocating to move people OUT of their safe homes and communities into isolated homes with little or no oversight, rapid turnover of poorly trained or inexperienced caregivers and adding to the crisis load of our community.

How did this happen?