Olmstead Violation in Washington State

Washington State passed a law in 2011 which prohibits youth 21 and under from accessing needed supports in the ICF/ID.  This law is in direct conflict with Olmstead.  When I brought up the issues of choice with our then Department of Social and Health Services Secretary Susan Dreyfus, she responded “parents still have choice, they can send their child to another state if they want these services.”  Choice obviously means something different to her than it does to me and the many, many families who I come into contact with.

Two prolific researchers and authors on the issue of deinstitutionalization have written  “Almost all the studies cited earlier involved people with lower support needs, but individuals with severe disability likely do poorly given little support.  Where independent living had the best outcomes for those with mild/moderate ID, those with severe/profound disability achieved the poorest outcomes when living independently, and did better in supported living arrangements with more support.  {Gardner and Curran, 2005}.  Jones et al. {2001} found that the increase staff support for participation resulted in greater resident participation in activities.  However, the benefits were greater for individual with more severe disability.  So, while regularly undertaking activities independent of staff support is associated with skill development and achievement of personal outcomes for people with lower support needs, it is not for persons with severe disability, who instead require active support from caregivers for successful participation in meaningful activities.”

This is the problem that we will see more and more of as those who are still in the ICF/ID tend to be those with the highest support needs.  Our community service system is already struggling and breaking with the people they currently are attempting to serve.  It is documented not only here but throughout the ID research that the studies have predominantly been done looking only at those with lower support needs.  The outcome results from these studies cannot be applied to experiments that will be done with the population which has higher support needs.  This train wreck needs to stop before more of our loved ones are injured or killed.

Why, when a youth, age 19, is doing so well in the supportive community is our state denying him services and trying to boot him out to a community which cannot support him and keep him safe?  Makes NO sense at all.

OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), No. 98-536 (Supreme Court of The United States June 22, 1999).

Lakin, K. C., & Stancliffe, R. J. (2007). Residential Supports for Persons with Intellectual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 151-159.

State Audits Show DSHS lost over 2 million dollars due to mismanagement

The Department of Social and Health Services is so mismanaged that they have lost over 2 million dollars in our public funds in just the past couple of years.

I want to know why the department is not scrutinzed and held accountable for thier lack of ability to manage payroll, contracts, benefit payments etc. yet say they do not have the budget for cost effective, crucial programs and services for our citizens with developmental disabilities.

Why is DSHS allowed to cut programs, why do some prominent agencies which masquarade as disability advocates, some of these even paid with our public funds themselves, advocate for closure of needed and desired programs while at the same time pushing for the undertaking of costly experiments with the lives of our most vulnerable citizens?

I am outraged by not only the lack of accountablity but the lack of integrity in the managment of DSHS and the integrity of some advocates (The Developmental Disabilities Council, The Arc Chapters, just to name two – there are more involved in this scandulous cover-up)

Our legislators and public are not told the truth about the costs nor are they told the truth about what is found in the data of many reports.  Not only is much of the data misrepresented but U.S. Supreme Court Decisions, such as Olmstead, are misrepresented by these agencies.

It is time that we, as grassroots advocates, make these issues known and upfront.  It’s a hard battle to fight but we need to do it for those who cannot do it themselves.

See this document for resources, facts, Washington State Auditor’s reports and other issues.  Many of these issues were defered and will be looked into this year, hopefully.

DSHS Audits and losses

DRW Validates Concerns regarding Safe and Quality care in the community for RHC residents

 

Mark Stroh, Executive Director of Disability Rights Washington (DRW) has written a letter to Governor Gregoire protesting her veto of Sections 7 and 11 of SSB 5459.  Even though DRW supported SSB5459, I am pleased to see their concern regarding the Governor’s veto of these two critical sections which were put in to assure safe and quality care for our residents. 

 

Without these two sections, there are no commitments to ongoing services, continued safeguards, quality assurance and independent oversight for the health and safety of our residents. 

 

Thank you to Disability Rights Washington for validating the concerns that we, as grassroots advocates for a continuum of care for our citizens, have been highlighting in our statements to the public and our legislators. 

Formation of Washington State Task Force to Look at DDD Services

Attached below is my letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities.  He had responded to a letter which I had written to MaryAnne Lindeblad, Assistant Secretary, Aging and Disabilities Service Administration, inquiring about the formation of the Task Force and the importance for a balanced perspective of the participants.

Dear Mr. Clintsman,

 

Thank you for responding to my letter to Ms. Lindebland.  It is hopeful to hear that the The Department of Social and Health Services and the Department of Developmental Disabilities finally understand the concept of and have adopted the term “continuum of care.”

 

We, as grassroots disability advocates have always stressed the importance of the continuum of care, realizing that each person needs to be looked at individually and their needs met according to their assessed support needs.  The only way to accomplish this goal and also accomplish it within a reasonable budget is to continue to offer the full continuum of care to all – regardless of their age group.

 

Once one realizes the critical importance of this continuum, I’m hoping that the budget figures and reports will more accurately be reported to reflect the true cost of care – especially for our most vulnerable citizens and those with high acuity levels in several areas. 

 

It has never been disputed that citizens with high acuity can be accommodated in neighborhood communities and it’s wonderful that this arrangement can work for many.  It is neither realistic nor safe to consider this the best option or even a viable option for many of our citizens who currently reside in the state operated residential communities or those who have requested admittance but have been denied access to these communities. 

 

Given the many constraints of resources – not only dollars – but people and housing, it only makes economic sense to utilize the concept of “scale of economies.”  This concept utilizes the fact that being able to serve more people with the same type of support needs and sharing some of those services within a community actually saves dollars.  Within these communities, the residents also receive their comprehensive health care – minimizing many transportation costs, emergency back up costs, and extra personnel costs used to transport residents to other appointments just to highlight a few examples of costs which are often forgotten.   The residents have much better preventative care and follow-up care, are not traumatized by being “taxied” around town for various appointments such as lab draws, xrays, dental exams, eyeglass fittings, etc. 

 

I will highlight one example of a woman in her mid 30’s.  She lives in a supported living arrangement, has cancer and many other health related problems.  She came through the department in which I work to have her port-a-cath changed due to mismanagement and infection.  This is very unusual to need a port-a-cath replaced, particularly if the first one has only been in a short while.   This woman presented in surgery, unaccompanied by a guardian, unable to comprehend all that was going on.  She had missed many of her scheduled doctor’s appointments related to not only her cancer treatment but preventative and follow-up care for other health issues.  It is stories such as this that I see as totally preventable when a person lives in a residential community with comprehensive care.  What budget does the cost of her care due to mismanagement of her health problems get attributed to?  This doesn’t even take into the account the effects of pain and suffering to this woman. 

 

I know from  looking at many sources which DDD and DSHS provide regarding costs of care, services requested and provided and even the cost of care for the 30 highest cost DDD residents  that you provided to me, the figures that have been used for cost comparison are extremely inaccurate with missing costs, cost shifting and data input errors.    Data that was used for these cost comparison reports was taken from reports with many inaccuracies – therefore, the data pulled is essentially useless if getting an accurate assessment of the cost was the goal.   

 

 

In addition to the issues of safety for our residents, we must also look at safety and training for the caregivers.  I will be looking into the L&I cost of “on the job injuries” to caregivers and charting from which type of facility the highest percentages originate from. 

 

Again, hearing that The Department has now adopted and supports a continuum of care, maybe we can really move forward with innovative systems which are cost effective to safely support our most vulnerable citizens. 

 

I will be following up this letter with data which supports the need for a continuum of care.  In addition to having accurate data, it is critical for some very prominent advocacy groups to realize that denying our citizens with the support needs which are available in the residential communities is not only denying these people their human and civil rights but will weaken the whole system by putting an undue financial burden on our state.  These actions which they advocate for will actually minimize the services to many who have less acute support needs.  The dollar can only be stretched so far without something giving.

 

 If one were to follow their example of “everyone needs to live in the community” I’m afraid that we will lose many of our beloved family members. 

 

Again, thank you for your follow-up letter and I will be communicating with the Task Force Members often once the committee has been decided.

Governor Gregoire has been reading too many Brothers Grimm


 

 

 

 

 

 

The Brothers Grimm are alive and well in our society today – just take a look at these modern day fairy tales: (horror stories)

As you read the current state of affairs below, think about Little Red Riding Hood and the Wolf or poor little Hansel and Gretel who are going to be eaten by a cannibalistic witch.  The themes are shockingly similar.

Governor Gregoire is violating the civil rights of our most innocent and vulnerable citizens.  Her decision to support a social experiment with innocent peoples’ lives by closing our Residential Habilitation Centers is not only irresponsible but inhumane treatment.  This social experiment is very costly – not only in dollars but also in the quality of life for our citizens with disabilities and those who care for them.

The double dose of lunacy that goes with this decision is that agencies that are there to supposedly help protect these very people are going right along with the Governor.  DSHS Secretary Susan Dreyfus, The Department of Developmental Disabilities, The Developmental Disabilities Council and The Arc chapters in our state are among the more well-known groups which are pushing this ideology gone very awry.

These groups talk about the horrors that they have endured at the hands of others – treatment that they, in their “self-advocacy” movement are propagating for those more vulnerable and not able to make their own voices heard.  These “self-advocates” are removing choice, community, health and safety from those less able.  In so doing, these “self-advocates” are also taking away from themselves and others on the continuum of disability.

Who is leading them down this path of self-destruction?  Again – those agencies and groups who are set up to actually help and guide them.  They are being guided down a dark, dark alley of self-destruction rather than self-advocacy.  I surely hope they come to their senses before more lives are lost or destroyed.

Let’s not let the “big, bad wolf” or the cannibalistic witch overpower us in our quest to advocate for our citizens who do not have a voice – we must speak up for them and protect them.