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

Shame on Frame – King 5 “Investigative” report

Susannah Frame is doing a great disservice to our community. Her total lack of appreciation for the diversity of our population of citizens with intellectual and developmental disabilities is more than problematic.   Without an understanding of this diversity one cannot even begin to understand the complexities involved in the care of our community members.  Below are some bullet points that need clarification from Ms. Frame:

  •  mentioned several times about biases in the “scientific studies” but fails to mention what those biases are.
  • refers to cost of care being less expensive in a community setting – but she has not explained what “cost of care” is or how it is measured.
  •  has not shown any indication that the cost of care is higher for those with higher support needs.
  • refers to the families who have had their loved ones in the RHCs for 20-30 years and are afraid – unaware that there are many young people who live in these therapeutic communities and many more who were denied this care.
  •  has not offered any solutions or real alternatives or how those alternatives could be achieved.
  •  seems unaware of the crisis in our community care system with so little oversight that many fear for their health, safety and lives in these community settings.
  •  has not addressed the issue of access to care in the community such as medical care and transportation.
  •  has not spoken with any of the agency service providers in the community about their inability to staff and appropriately care for an influx of people with very high support needs.
  •  has not addressed what a person’s community is and personal choice in making that decision.

If one is going to talk about de-institutionalization without addressing safe and appropriate supports in the community, this type of advocacy endorses neglect and risk for our most vulnerable citizens. The environment that is the Least Restrictive for that Person is the environment which allows that person to interact with and be part of the community to their fullest potential. As stated in the 1999 US Supreme Court Decision of Olmstead, for some that may be the institution.

The issues above need to be addressed and discussed in any conversation dealing with care of our loved ones. The answer is not arguing  “institution vs community” – the answer is to look at  the diversity of the population and understand their needed supports and then how to fund and maintain those supports.

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.”  John Adams

Cost of Care

Yes, it is absolutely correct that DSHS costs for care in the RHC is greater than DSHS costs for care in a community setting. Looking only through the eyes of DSHS it would make sense to close the RHCs to save DSHS funds – but looking at the big picture of how things work that is exactly the opposite of what one should do if cost was a factor. .

Cost of care is one issue discussed  – but not what “cost of care” means for each setting nor the support needs of the residents in each setting.  The graph below is a good example of missing costs – but necessary costs for care.  Looking at the cost breakdowns for areas of care, it is clear the RHC provides a much more comprehensive package of care than the community settings.   The greatest cost of care in community settings is the personal care cost and for people with higher support needs, that personal care cost is extremely high as evidenced by the data from DDA.

RHC and Community Cost

All of these are included in the RHC Cost

Where are they in Community costs?

Other Costs

Resources:

Developmental Disabilities Administration. (2012). Cost of Community Clients with High Support Needs.

(2011). RHC Cost Details and Federal Reimbursement – CMS.

Community Cost of Care Reports, Public Disclosure Information Revealed. (n.d.). Retrieved from http://www.becausewecare1.com:https://becausewecare1.com/community-cost-of-care-reports-public-disclosure-information-revealed/

Clintsman, D. L. (2011). Assistant Director, Department of Social and Health Services. 30 Community DDD Residents – highest costing to DDD.

Atkinson, M. (2011). DSHS: Developmental Disabilities Services Overview. Office of Program Research and Senate Committee Services, Joint Legislative Task Force. Retrieved fromhttp://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/DevDisabOverview.pdf

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved fromhttp://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pd

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities:http://www.siswebsite.org/cs/SISOnline

Division of Developmental Disabilities: Intake and Determination of Developmental Disabilities. (n.d.). Retrieved from Washington State Legislature: http://apps.leg.wa.gov/WAC/default.aspx?cite=388-823&full=true

(Data taken from Certified Residential Program Costs of Care Reports for 2010. The agencies from which data was retrieved:

Aacres WA, LLC – Tacoma Aacres WA, LLC Abbott House –  Alpha Supported Living – Ambitions of Washington – Region 4 Ambitions of Washington – Region 5-  The Arc of King County – The Arc of Spokane –  Bethesda Lutheran Communities Camelot –  Centerpoint Services –  Community Alternatives for People with Autism –  Community Homes –  Community Integrated Services –  Community Living – Bellevue –  Community Living – Kent/Auburn –  Community Living – Kent Intensive Community Living – Sunnyside –  Community Living – Yakima –  Destiny House –  Educational Programs in Home Living –  Friends of Families –  Friendship House –  Group Action for Peninsula People –  Harbor Alternative Living Assoc. – Inglewood Residential Services –  Integrated Living Services –  Kitsap Residences –  Kitsap Tenant Support Services –  Life Skills Center –  Maksu, Inc –  Premier Care Services –  Provail  – Puget Sound Regional Services –  ResCare –  Shamrock Living Services –  Shared Journeys –  SL Start – Grandview –  SL Start – Seattle –  SL Start – Spokane –  Stand Together Total Living Concepts (2010)

It’s a Wonderful Lie

WA Action Alert

 

Once again, The ARC – Washington State has issued an Action Alert to advocates with inaccurate and unfounded information.  Is this another attempt to rile up advocates for those who have intellectual or developmental disabilities to go against one another rather than working together for the good of the whole? It is a wonderful lie, but it’s a lie.  That is not wonderful – it’s deceptive and harmful.

Please see this link for accurate information from both the Office of Financial Management and Memo from DDA Asst Secretary Perez re 2014 Proposed Supp Budget.  It is clear from both these documents that The ARC-Washington State is misleading our citizens.  I have written to both Sue Elliott, Executive Director and Diana Stadden, Policy and Advocacy Coordinator to indicate the source of their information for the extremely misleading Action Alert.  They have not been able to produce any evidence to support their claim.

 

Alert

Below is the text of The ARC – Washington State Action Alert

Arc action Alert for posting

Comparing the misleading information above which was sent out in a media blitz on December 19, 2013, the real information is below:

In light of these facts, Governor Inslee is proposing modest adjustments to the 2013 Supplemental Budget.  There is a very slight .7% overall increase in the DDA budget to meet these changes, which include:

  • An expansion of eligibility to Medicaid to individuals between the ages of 19 and 64, with income below 138% of the federal poverty level;
  • Funding for full time staff to perform preadmission screening, resident review, and specialized services (when needed) to Nursing Home clients in the Residential Habilitation Centers.
  • Reimbursement for developmental and autism screening will be added to the Medicaid plan to assure that children with developmental delays are identified as soon as possible.
  • Hiring of additional Residential and Community Services investigators of supported living providers in order to improve the timeliness of investigations, which will be funded through a certification fee.
  • The Vulnerable Adults Incident Tracking system (TIVA) which will be  funded through the Roads to Community Living grant.
  • Development of the Community First Choice option Medicaid waiver which would result in the state receiving an additional 6% federal match for services provided to individuals with developmental disabilities and the elderly.  The savings could be re-invested in additional client services.
  • Capital Budget—Funding added to the Capital budget to make infrastructure repairs at Lakeland Village and Fircrest School.

It certainly appears to me that there is support from our Governor to ALL people with intellectual and developmental disabilities – from the young children to the elderly, from those at home to those in supported communities.

Please, encourage The ARC chapters to support a continuum of care, support ALL people with ID/DD and do not pit advocates against each other by spreading false information.  In order to improve the situation, we need to work TOGETHER!

Please do write, call, email, fax Governor Inslee to indicate your support for working together for the benefit of ALL

Call the Governor’s office at (360) 902-4111

Send an email to the Governor at https://fortress.wa.gov/es/governor/

Post a response on Governor Inslee’s Facebook page at https://www.facebook.com/WaStateGov

(You must have a Facebook account. Be sure to tag your legislators.)

Send a tweet (text message of 140 characters or less) to Governor Inslee’s Twitter at https://twitter.com/govinslee

Thank you, Governor Inslee

Governor Inslee has recognized the great need for our citizens with intellectual disabilities.  Those of us who support a continuum of care, including the Residential Habilitation Centers (RHC), are greatly appreciative of the Governor’s understanding of the crisis and the need to support our most vulnerable citizens.

Currently there is a waiting list for youth and young adults to enter the RHCs in our state.  There are calls made frequently from the hospitals, looking for placements for these youth.  Finding no resources, the families continue in crisis mode, using a revolving door in and out of the hospital.  This is not a solution for anyone!

I am assuming that someone from the hospital administration or some families in crisis have alerted Governor Inlsee about these waiting lists.   I’m sure some of them are on the “no paid services” caseload too.  This is  not an “us versus them” issue as The Arc portrays it but an issue that we are all in together.  Why is that so hard for so many Arc followers to understand.  We want what is best for each person, no matter what their support needs are but also recognize that people have choices and there are cost constraints to our communities and state.

Why would we not utilize a cost effective community such as the RHC which actually does serve many needs of many people?  The Arc and others have not been able to prove that the costs for independent living would be less and the people would be safe and continue to receive life sustaining services if we consolidated the RHCs as they propose.   They have not shown where the services, which are included in the RHC package will be met nor how they will be paid for.  They have not shown how those who need 1:1 or 2:1 assistance will be able to be transported to frequent medical, dental or therapy appointments or how they will have the daily nursing care required to maintain their health or access for changes.  They have not indicated there will be adequate oversight or staff that is adequately trained to manage severe behavior or mental health issues.

Without looking at the whole picture, they cannot assume that these vulnerable people will be safe.

The track record actually proves the opposite – negligence and death have been too frequently reported for anyone to assume The Arc is aware of the dangers they will impose on the lives of those who are forced from their homes.  Again, this is not an “us” or “them” situation but a situation that we all must think of as a whole.   Why are we allowing an advocacy group to dictate what may be best for the good of the whole?  They are clearly misleading people by not looking at the reality of the situation and only the tip of the iceberg.

I would like to urge The Arc of Washington to take a lead from progressive chapters of the Arc.  For instance, The ARC Jacksonville has been looking at intentional neighborhoods and has successfully gained funding with housing tax credits, state funds and private funds to begin groundbreaking for The ARC Village project in the spring of 2014.  What a great effort in working together.  I would love to see our state emulate this cooperative advocacy.

http://www.arcjacksonville.org/village-on-hodges-planned-community/

While I support much of what The Arc advocates for I cannot support The Arc with the intentional efforts to hurt people.  These intentional actions which push harm to our most vulnerable citizens is immoral and unethical.  Until The ARC can work with all advocates in the continuum and realize that we are all in this together for the good of all, I’m afraid our citizens will continue in a state of crisis.  I, for one, would like to see the crisis subside not increase but I know that with the “us” versus “them” method, this will never happen.

Please for the sake of the whole and for an easing of the crisis, let’s take a lead from The ARC Jacksonville and look at new alternatives which may provide stability while providing safe, affordable care for our loved ones.