Endorsing a Bully

Disability Rights Washington is presenting their “Breaking Barriers” awards fundraiser this month.  Below is information from the Disability Rights Washington Website which describes this award.

Ex-Commissioner (Seattle Commission for People with Disabilities) Shaun Bickley, was chosen as the recipient for the Advocacy Award.  There are many of us in the disability community who have been victims of Shaun Bickley’s online malicious and cruel attacks, slander and libel.  We are upset about Bickley’s violations of the First Amendment as a Commissioner, falsified data and information Bickley presented to the Commission, the previous Mayor, the previous Director of the  Office of Labor Standards and the Seattle City Council.

In addition to the above allegations (all well documented in public records), Bickley had extreme disregard for the by-laws and code of conduct of the Seattle Commission for People with Disabilities.  In fact, after Mayor Durkan did not re-appoint Bickley to the Commission, Bickley took it upon himself to return to the Commission the next month and have himself voted in as the co-chair with a Commission appointed seat.  Bickley continues to refer to himself as the Co-Chair of the Commission despite not being appointed by the City Council.  This is a violation of the by-laws but evidently, Bickley is not held accountable to those by-laws.

“Bully”  is the least offensive description that many who have encountered Shaun Bickley use to describe his actions towards others.

How has it come to be that a BULLY is being honored as a recipient of this “Breaking Barriers” award?

 2018 DRW Breaking Barriers Awards! 

September 29, 2018

Each year, Disability Rights Washington presents its Breaking Barriers Awards.  These prestigious awards honor a business, an elected official or public servant, and an advocate with a disability for breaking barriers to advance the rights of and improve the lives of people with disabilities in Washington State. Specifically, Disability Rights Washington will present the following awards:

  • Advocacy Award
  • Public Policy Award
  • Business Leader Award

Advocacy Award

Disability Rights Washington presents this award to an advocate with a disability who has made significant contributions in the past year to advance the rights of people with disabilities in Washington State.

Breaking Barriers 2018 - Shaun Bickley

 

Missing – Common Sense

This is been a year long battle with The Seattle Commission for People with Disabilities regarding their rapid elimination of special certificates that can allow specific people with specific disabilities to work at a specific job for a wage that may be less than the minimum wage.  While they are calling these certificates “discrimination”, the certificates  can actually provide people with an alternative for community integration that they may not have now.
This Commission and those organizations that have signed onto this thought process believing that just raising the wages will enhance these people’s lives have forgotten to ask the affected people themselves.  Some very important information regarding critical issues that people with disabilities who have significant support needs and how those needs are going to be accommodated have not been addressed.
This is the fallout of making laws without collaboration and without addressing the concerns of those who are directly involved.  The Commission refused to address a variety of concerns from stakeholders saying that those concerns didn’t matter and had nothing to do with the certificates or elimination of sub-minimum wage.
The facts are very different – there were 8 employees in Seattle who were making a sub-minimum wage  –   6 were at Ballard Locks making between $9.00 and $10.50 an hour and 2 other employees at community sites who earned  $11.01 and $11.25 an hour.  (The Commission reported extremely inaccurate information via a press release stating that there were “at least 130 disabled workers in the city of Seattle making subminimum wage, most making under $1.60/hr.  The lowest-paid worker under these exemptions in Seattle makes 20 cents an hour”   SCPWD Press Release June 22 2017
The totally false information The Commission released to the press (and previously to the former Mayor and Councilmember Herbold) was discovered as a mistake by the then co-chair of The Commission.  This error was pointed out to the person of contact on the Press Release who refused to issue a correction.  The author stated – press release already went out, if we receive follow up we can discuss that with those people.  He also stated that he would believe the documents he got from Department of Labor over what someone told him.  Unfortunately, this person was not able to read the document from DOL correctly and made this huge mistake in numbers of employees and their wages.  Commission will not amend press release
This is how the Commission responds to those who questioned their numbers:
April 13 2018 second chance from Commission - spam and deliberately false information
Before this issue goes any further under such faulty research and data collection, stop and listen to those whose lives were and will be directly affected by these changes.
I continue to ask the Commission about accountability and transparency – they feel threatened and harassed by me and want to have me banned from Commission meetings.
Maybe the Commissioners should actually read some of the comments I have shared and read the research and documents they presented regarding recommendations.  While doing that, they should research what has happened in those other states who have changed their laws – are the people working, have their lives improved?  These are all issues that need to be addressed before more action is taken.

Email from Shaun Bickley regarding City Council – do not share

The Seattle Disability Commission is proud to be among the first organizations to call for an end to Washington’s exemption to minimum wage laws, which allow employers to pay disabled people, and only disabled people, less than minimum wage.

A current copy of the letter can be found here: https://docs.google.com/…/1cCT_IL6I3HLcmYKdK5QhdNamqQ…/edit…

If your business or organization (operating in the state of Washington) would like to be added, please email sbickley@arcofkingcounty.org . Text is below:

We, the undersigned organizations, oppose the practice of paying workers with disabilities subminimum wage. On April 13, 2018, Seattle joined the states of Alaska, New Hampshire, Vermont and Maryland, in ending the outdated practice of allowing subminimum wage employment of people based on their disabilities. We do not believe workers should be discriminated against on the basis of disability and join the growing coalition advocating for an end to state laws that allow such discrimination.

We believe all workers should be fairly compensated and are entitled to the same minimum wage protections regardless of their disability status. We hope the State of Washington will join other states and cities in taking the lead to put an end to this unfair employment practice.

Sincerely,

Able Opportunities, Inc.
Allies in Advocacy
The Arc of King County
The Arc of Snohomish County
ASUW Student Disability Commission
AtWork!
Autistic Self Advocacy Network
Autistic Women & Nonbinary Network
Community Employment Alliance
Disability Rights Washington
Downtown Emergency Service Center (DESC)
Geeks Without Bounds
Morningside
National Federation of the Blind of Washington
Open Doors for Multicultural Families
People First of Snohomish County
People First of Washington
Seattle Commission for People with Disabilities
Seattle LGBTQ Commission
Self Advocates in Leadership (SAIL)
Sherwood Community Services
TASH
Washington ADAPT
Washington CAN
Washington Low Income Housing Alliance
Working Washington
Work Opportunities

Preserve and build Respite and Crisis Stabilization

Time is running out – we need a YES Vote on SB 5243

 

save respite part 4 Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?

According to the Action Alert sent out by The Arc – Washington State they oppose this effort to preserve respite and crisis stabilization.  This bill is only aimed at preserving and building – not shutting down and limiting the few choices that our families have for respite and crisis stabilization.

It is time to question the motives of The Arc – Washington State and ask why they want to tear apart services.  Tearing down will only hurt those we are trying to help.

Please call the toll-free hotline at 1-800-562-6000 and ask your Senator to vote YES on SB 5243 – it is for the sake of our families!

Read the bill here and decide for yourself what is in the best interest of our families and community members in need of services.

(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

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)

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?

King County DD Wrap up for The Arc of King County Legislative Forum 2014

Letter to King County Legislators – December, 2014  (letter sent as a wrap up after watching the forum on TVW)

Thank you very much for attending the King County Legislative Forum on November 24, 2014. I was unable to attend and present some information regarding critical needs and access to services for many in our communities but do appreciate the opportunity to share the information with you at this time.

With Governor Inslee’s budget proposal it is clear that we will again be looking at more cuts to services for people with Intellectual/developmental disabilities. It is critical to have accurate information regarding community care, respite, crisis care and cost of care in order to make informed decisions.

What is most concerning to me is that facts are not being shared regarding access to and cost of care – particularly for the much needed respite and crisis care. I have gathered the information below in hopes of sharing some solutions to the problem. You heard some heart wrenching stories, particularly from Janice Lawrence and Laura Jorgenson regarding lack of respite and crisis care. My family, too, has experienced these issues – my son faced jail as the only option left for “care” as a 14 year old with profound intellectual and developmental disabilities. Multiple and prolonged hospitalizations were our crisis care until the denial of services was able to be appealed and he was admitted and stabilized at a Residential Habilitation Center (RHC). I understand the agony of these families in trying to secure appropriate care for their children and I work hard to advocate for this care.

You may recall in 2011 our state passed 2SSB 5459. There was quite a bit of controversy regarding this bill for several reasons – mainly closing of the Frances Haddon Morgan Center (FHMC) based on “cost savings” which never materialized and a state law which goes directly against Centers for Medicaid and Medicare Services admission of eligible clients into the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) or the Residential Habilitation Centers (RHCs). Washington State passed a law prohibiting those under 21 from admission to the RHC, regardless of choice and eligibility requirements being met.

The plan was to open up several crisis care centers for youth throughout the state. This plan was not fulfilled – again for several reasons but mainly because there was NO cost savings in closing FHMC from which these crisis care centers were to be funded.

Developmental Disabilities Administration was able to secure one home in Lakewood which can care for only 3 youth at a time. Since opening this Crisis Care Center (you heard one mother, Janice Laurence, talk about her son’s utilization of this center) in December 2012, 12 youth have been able to access these services. Of those 12, only one was able to return to the family home – all others either went to an RHC or a licensed residential home for youth. The daily cost of care in the Lakewood Crisis Stabilization is $1,165.

Frances Haddon Morgan Center (which today sits empty and unused) was able to care for about 22 respite clients per month for a cost of at a daily rate of $541 (federal and state costs combined) – clearly, utilizing the RHC for much needed respite was not only more cost-effective but much more accessible to our communities in need.

Data taken from the Executive Management Information System also clearly indicates how our RHCs serve those in our communities throughout our state. We often hear about the number of “permanent” residents in the RHCs but rarely hear about the much larger numbers of community residents who receive much needed crisis care and respite care. The community members served in our RHCs are more numerous than the numbers of permanent residents served in the RHCs. Also, the RHCs can provide this expert and comprehensive care at 46% of the cost for similar care at the Crisis Stabilization Center in Lakewood.

It only makes sense to continue to utilize the facilities we have and use them to capacity to best serve our communities in need. Closing or consolidating our RHCs is not the answer as evidenced by the wasteful “experiment” we have experienced due to passage of 2SSB 5456.

number of community members who access respite services

Average Daily Cost of Care for Respite

References:

Data received from the Department of Social and Health Services, Executive Management Information System 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

Report to the Legislature – December 5, 2011

TVW.org 25th Annual King County Legislative Forum sponsored by King County DD and The Arc of King County

http://54.185.64.84/index.php?option=com_tvwplayer&eventID=2014110041

Cost and Community – Part 1

I have not been involved in politics for very long and it has been a steep learning curve for me.  Prior to my son diving into prolonged crisis I had contacted The Arc of King County for Parent to Parent and other ideas.  There was never a parent to parent “match” for me and the message I got from members of The Arc of King County was for me to go talk to my legislators.  I felt alienated by the very group which was supposedly my advocate.

After several years of crisis after crisis, family destruction, loss of jobs and income, and near loss of life, my son was able to be stabilized in the Residential Habilitation Center (RHC) or Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID).  It was after this that I became to understand the importance of advocacy for our loved ones and I also had time to learn and research on the issue.

I also realized then that The Arc was not an advocate for those with high support needs and this is confirmed over and over again from families.  Most recently a family in crisis in need of a supported living arrangement called The Arc of King County and was told “we only serve higher functioning individuals” and had a “I don’t care attitude” and was very “rude.”

This is not meant to be an attack on The Arc – they have done great work for many but it also needs is noted that they do not speak for the whole community of people with intellectual disabilities and do not support the wide continuum of care which includes intensive support needs of those for whom campus type communities best serve.  I would really like to see this issue addressed seriously rather than being dismissed and disrespected without even listening to the real issues.

I scoured original resources, requested data from state agencies through public record requests, studied many reports and research projects and gathered some great information which could really benefit many.  The problem is that this information has not been shared through the “politically correct” channels and is negated, tossed aside and discounted.  It’s a shame because if people just took the time to look at it and ask questions, they would  learn something new and put information to good use.  This knowledge could help alleviate more crisis.

Reading research articles by reputable authors and published in major journals, I have also seen that research does not address the issues of those with the highest support needs.  The research focuses on those who are higher functioning and what happens is this information is then generalized to the population as a whole.  This is a very dangerous generalization which will backfire.

The two major issues are cost and community and I think that almost all people involved agree that these are critical issues. There are major flaws in how these issues are reported and discussed and this is where there is a great divide.

In upcoming posts I will address the issues of “cost” and “community” and give references to data and research.  My hope is that the logic will come through and people will begin to question the rhetoric that just does not add up and make sense.