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.

Where is the accountability?

I am writing with concerns that I and many others have regarding government accountability.

Much of this has stemmed from the passage of 2SSB5459 last year and the more that I research and uncover through public disclosure, the more I am frustrated by the lack of integrity and accountability that some of our state’s agencies and legislators allow.

This is a very complicated and convoluted mess now and it is highly charged with emotions of people with various ideologies. What is consistent though is the monopoly of decision making by one entity and the censorship which that entity uses so that others with information are not able to present to the public concerning issues which may not support the position of the reigning “expert.”

I am referring to issues regarding care of our most vulnerable citizens. The Department of Social and Health Services (DSHS), The Division of Developmental Disabilities (DDD), The Developmental Disabilities Council (DDC), Disability Rights Washington (DRW) and The Arc Chapters – which actually have a monopoly on almost all social media and groups that have issues pertaining to people with developmental and intellectual disabilities – all have an agenda which they push and utilize false, incomplete and inaccurate data and reports as “facts” in order to gain agreement with their agenda from others.

Logically, I could not see how what they were saying could in fact be true and I started to do my own investigation of data and reports. I have gathered much information through public disclosure and by looking at the original sources; it is clearly evident that the above mentioned agencies are choosing not to look at the data accurately. Any attempt to have accurate data shared is censored and people are not aware of the inconsistencies and inaccuracies that those agencies promote. Due to the inaccurate reports that the above agencies are using, our legislators are making critical decisions that are not based on the accurate data.

Many people are being hurt by these decisions and in fact we have already had one death this year solely due to the passage of 2SSB5459. It is time to stop and take a look at the practices of these agencies and question why they are promoting policies that actually hurt the very people who they are set up to protect.

I have contacted Washington State Institute for Public Policy (WSIPP) regarding some of these issues also. The author of the last report which WSIPP published responded to me that yes, I indeed did have some critical information that needed to be considered but they are only able to do research if directed by the legislature. The problem is that so many of our legislators listen to the above stated agencies’ as the experts and will follow their instruction and recommendation when in fact that is part of the problem.

We need to have an outside entity look into these issues – an independent group which can look at the facts without needing to support an ideology. I have attempted to do this with research but since I am only one person and am reporting information which does not necessarily support the approved ideology, I am censored and silenced. It is extremely difficult to have people look at this information since this issue has gone on for so long and people are most likely sick of it being repeated.

I can tell you from looking at this issue without the ideology one will see a very different picture than the picture painted by the “experts”. Looking at the budget figures alone, the support needs of the residents (as reported by the individual residential agencies themselves) and taking information from DDD and DSHS reports, it is clear that there is a continuum of support needs and as a person has increasing needs, their cost of care for direct and indirect support needs increases. The place of residence does not affect the cost of direct care.

The other issue that will be seen is (as reported by the agencies themselves) the support needs of most residents in the community residential settings do not come close to the support needs of the residents who choose to live in the Residential Habilitation Centers (RHCs). The “experts” will deny this and reference the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” by Barbara Lucenko and Lijian He dated February 2011 (http://publications.rda.dshs.wa.gov/1432/)

The report referenced above is a perfect example of manipulating the data to fit the ideology even though the data collected in the research did not support the ideology. The data was collected for three different residential settings: Residential Habilitation Centers, Community Residential and Other Community Residential. The data clearly showed statistically significant differences in supports needs between residents in all 3 settings. The author of this report chose to collapse the three settings into two for the “Key Findings” and proceeded to state “Residential Habilitation Centers and Community Residential” and “Other Community Residential” were the two settings. This manipulation totally changes the outcome of the data and this was done in order to support a particular ideology which the data itself did not support.

There are other issues regarding how 2SSB5459 was passed into law. There was a public hearing (with only 20 minutes notice) May 18, 2011. Rule 45 was suspended for this meeting so that bills could be heard without 5 days’ notice. I do not see any written notes regarding the reason for this rules suspension. This public hearing was to be on SSB5459 yet as the public meeting was commencing (again with only 20 minutes’ notice) it was stated that there was now a new substitute bill that was just at that moment going into the Electronic Bill Book.

 How can there be public testimony on a bill that is not even available yet?  Also, it states in the bill history that the First Reading of 2SSB5459 was on May 19, 2011 – the day after the public hearing. Why is the path of 2SSB 5459 allowed to take this very unusual and undemocratic route to passage of this bill?

I have much more information regarding costs, health and safety, quality of care and support needs. I would welcome the opportunity to be able to share this information with people in hopes that some of the decisions that have been made based on information only supporting one ideology can be looked at with a more objective perspective.

Please contact me for information regarding costs reported by agencies, DDD Reimbursements to agencies, Support Needs Index of Residents and cost shifting.

Thank you,

Cheryl Felak, RN, BSN