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?

To The Arc and other Community Advocates for people with Intellectual Disabilities

I am going to be presenting some very critical information.  I do not have a bias for community versus institutional settings for residents as many of you believe I do.  My bias is in the truth and reporting accurately what the reality of the situation is.  My bias is in upholding the US DD Act and upholding the 1999 US Supreme Court Decision of Olmstead.  I believe health and safety are paramount in the individual and their family/guardian’s choice in making the individual choice of what is best for that person.

Please read through the material, re-read Olmstead (or read it for the first time) and the US DD Act and then respond.  I will gladly answer all questions and I have documented all sources.  I welcome comments from people who have read the information or from those who would like more information.   Thank you.

This is why our community resources and our state run institutions are in such crisis – it’s because people are misguided and are using inaccurate and false information to base policies on.   In order for us to turn this crisis around, we need to start seeing things in a more realistic light.

The following quotes are taken from a “research” report authored by DSHS employees.  Read the quotes and then formulate an idea about the care levels for the residents in the 3 environments which were studied.  Then look at the authors’ conclusions and “Key Findings” and see if you agree with their assessments.

“Clients in RHCs had significantly higher support needs indicated for all SIS scales than clients in community residential programs and those supported in other community-based settings.”

“Clients in RHCs had significantly higher Behavioral Support and Medical Support need scores than clients in community residential programs and those receiving other community-based services.”

“Based on the interquartile ranges (25th-75th percentile, where half of each group’s scores lie), represented as a rectangle on each line in the chart below, and the medians (the midpoint of the distribution of scores, represented by the diamond shape inside each rectangle), support needs for RHC clients are typically higher on all scales, and clients residing in community-based settings have more diverse support needs for home living, health and safety, and social activity than clients in RHCs or community residential settings.”

“Clients in RHCs were more likely than those in community residential programs or clients receiving other community-based services to have high scores on all the DDD acuity scales presented below, except for seizure acuity. An extremely large percentage of clients living in RHCs have high acuity levels (and therefore elevated or urgent need) for protective supervision (95.3 percent) and interpersonal support (86.3 percent), and almost three fourths have high acuity levels for activities of daily living (73.6 percent).”

“Clients in RHCs were more likely than those in community residential or other community-based programs to have high acuity levels noted for behavior problems. Over one third have high behavioral acuity scores (40.6 percent). High behavioral acuity scores indicate that the most prominent problem behaviors for these clients are potentially dangerous or life threatening. Clients in RHCs were also more likely to have high medical and mobility acuity than those in the other two residence types, with over one third in RHCs having high medical acuity and one fourth of those in RHCs having high mobility acuity.”

“Clients residing in RHCs had significantly higher support needs than clients in community residential programs who, in turn, had higher needs than those residing in other community-based settings for activities in the following life areas: Home Living, Community Living, Lifelong Learning, Health and Safety, and Social Activities.”

“The more restrictive the setting, the greater the likelihood of having high medical support needs.”

“Our current findings suggest very clear differences in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs, and those in community residential programs being more likely to have high medical support needs than those in other community-based settings. Specifically, clients served in RHC’s were more likely to have an exceptional medical support need than those in either of the community settings, and clients in community residential settings were more likely to have one than those in other community-based settings.”

“With updated data for long-term RHC residents, there is now a clear difference; with those in RHCs more likely to have a medical support needs score greater than five than those in community residential or other community-based settings.”

The quotes above are all taken from “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” by Barbara A. Lucenko, PhD and Lijian He, PhD.

“The purpose of this report is to examine the similarity of support needs among DDD clients living in the following three settings: 1) Residential Habilitation Centers (long-term residents of RHCs with recent full assessments of need), 2) community residential, and 3) DDD clients supported in other community-based settings.” (Lucenko, 2011) yet in the Key Findings the authors  DO NOT address the 3 areas but have arbitrarily combined the RHC and Community Residential into one group and Other Community into the second group.  By doing so, they have invalidated all the work of the study and have not addressed the purpose of the report.

This misleading report is what legislators were given to base their decisions on.  I urge anyone with any academic or research based background to look at this report and testify as to the validity of the authors conclusions.  This type of academic or research reporting would be thrown out of any “real” academic study so why does our legislature allow such shoddy work to guide policy?

Of the 7 areas assessed by DDD for Support needs (acuity), the average RHC resident scores HIGH in 3.61 of the areas, Community Residential in 2.05 and Other Community in 1.61.  This clearly indicates that the average RHC resident requires more support than the average Community Resident.

Residents with mutliple areas of HIGH Needs

Updates – DSHS and DDD need to Answer to the Citizens

 

I am writing to you as a plea to look at the data that I’m presenting and to realize that the information that The Department of Social and Health Services and The Division of Developmental Disabilities have presented has been very misleading in the information that they present.

 

This frustrates me to no end.

 

There are many advocates working extremely hard for our citizens with developmental disabilities and due to the inaccuracies of DDD, these advocates are basing much of their work on false information.  This has maybe not created the crisis but has certainly added to it and unless DDD begins to report the data more accurately and truthfully, this crisis will just continue.

 

DDD is inaccurately reporting the cost of care for high acuity residents when they move from the RHC into a supported living arrangement (see attachment for data).  There may be many issues related to this but whatever the issues are they are not benefitting anyone in our state but actually causing harm and it needs to be addressed.

 

  • We have already had one citizen who was transferred from Frances Haddon Morgan Center die.

 

  • Contrary to what Secretary Dreyfus may say, this was not an accident.  Yes, there are accidental deaths but when it is truly an accident are 2 staff people fired and 2 more forced into “resignation?”

 

  • We hear about how our state has successfully transferred people out of the RHCs in a smooth transition. 

 

  • I just learned yesterday that the remaining residents who had been at FHMC are only in temporary housing until the 3 houses that will be built for them are started and completed – when is that going to be?  I don’t consider moving people who do not transition well in the first place into temporary housing while their new home is being constructed a smooth, thought out transition.

 

  • I heard that Secretary Dreyfus toured Rainier School and “saw” many people who she didn’t think should be there. 

 

  • Looks can be very deceiving and basing this assessment of who belongs and who doesn’t by one quick walk through is far from being able to know which environment is best for that person.

 

  • Did Secretary Dreyfus do an assessment on these people and talk with their caregivers and learn their history before making her judgment about if they belonged there or not?  I really doubt it and for her to make a statement such as that indicates to me that she is in the wrong profession.

 

  • Another example is that Secretary Dreyfus told me personally when I questioned her about prohibiting youth under 21 from admission to an RHC and she “assured” me that parents will still have that choice – they can send their child “out of state.”  Is this the type of leadership we need in a program that is supposed to work to help our most vulnerable citizens and their families?

 

  • Please ask DDD where the results of all their Quality Assurance assessments are –
    • We hear about what is being done but there are no results.  Where are the crisis beds located and how do people access them?  We hear about the funds for these beds and the teams but we don’t hear about where they actually are or how they are functioning.  That’s because they don’t exist.

 

This is not a system that I consider “functioning well” – in fact, I see this system as a system that is hurting and harming the people who it is supposed to be helping.

 

Please join me in asking DDD these questions.  These are the questions that need to be asked and these are the questions that will help us to realize that what DDD has been doing has not been working and will be causing more crisis unless someone starts to ask them these questions and get truthful answers.

 

Please, I’m asking for not only our citizens with developmental disabilities but for our whole state.  The issue does not only affect those with DD but touches every single person in our state. 

 

I am angry and frustrated with the irresponsibility of our DSHS and DDD programs.  Many people’s lives are at stake and there are many, many people working tirelessly for these same people.  Without the support of the department which is supposedly there so assist them, these people are continually working against a very dysfunctional program.

 Resident Hours Per Day letter and Chart

 

Missing Costs on EMIS from DDD Reports  – look on this EMIS data from DDD and see what is missing from the reports that DDD publishes.

 

Please Ask About these Missing Costs

One response from a legislator

“The advocates for both RHCs and community residential care have challenged those studies for years.  I must rely on the objective analysis of my fiscal staff, and not get engaged in the debate between advocacy groups about whose numbers are right or what is wrong with the numbers presented by one group or another.

 

My main task at the moment is the impossible challenge of balancing our budget.  We have very capable fiscal staff who have culled through the volumes of studies and will provide us with recommendations.”

This response saddens me – for several reasons.  This is not an issue of one advocacy group against another – it’s a fact of the government agency misrepresenting data.  Maybe there is a fine fiscal staff but if they are not given the correct information, how can they analyze it?  Garbage In – Garbage Out.

I’m also upset because if one is really interested in balancing the budget, wouldn’t one assume that you would want to look at accurate financial data?  When it’s handed to you on a plate, all you have to do is look.  This legislator won’t even look.  I’m sorry but my opinion of her has plummeted.

I know there are some very responsible legislators who will look at this information and ask the important questions.  I hope that number is increasing.

 

 

DDD Costs of Care and Decisions which cost lives

Some decisions have been made which have cost people their lives – I’m hoping that before anymore lives are lost or hurt, our legislators will be given accurate data upon which to base their decisions.

This has not happened in the past due to ideology gone awry.  The cost reports for the care for our citizens with developmental disabilities has been falsified and reported inaccurately.  As a start to this, I have prepared the attached letter – it has a few charts and examples of where this reporting has really missed capturing the costs of care for some of our citizens with the highest acuities who chose to live in small community homes.  Remember, this is not the choice for everyone.

The RHC is the most COST EFFECTIVE environment of care for our citizens with the highest acuity.  Why, in times of budget crisis would people allow these misleading cost reports to guide them is beyond me – not only are we ending up spending more for less care but fewer and fewer people will be able to receive care too.

Please read the letter –  Comprehensive Cost comparison