Senator Adam Kline and Developmental Disabilities

Senator Adam Kline sponsored a devastating bill in Washington State.  This bill, SSB 5459, essentially closes off services to those under 16 and greatly limits services to the age group of 16-21.  In doing so, there are no replacement services for these youth and their families which support them.  This was done to save money(it won’t) and promote community networks (it won’t).  How can our public be so fooled by the misleading and false information which was used to get this bill passed?

I am so concerned about our community with Intellectual Disabilities and their families.  I’m particularly concerned about our families with younger kids coming into adolescence.  Where are they going to turn for help?  Who will be there in times of crisis?

The Developmental Disabilities Services Task Force was formed with the passage of SSB 5459.  This task force has met once in October 2011.  This task force was to have a report prepared for our legislature by December 2012.  How is this going to be done when there have been not meetings or assignments or communication?

I wrote the following letter to Senator Adam Kline and the members of the Task Force today.  I had written several times recently inquiring about future meetings but never received a response.  I do hope to receive a response to the following letter, if not from Senator Kline, then from someone who may know what is happening with the Task Force.

Dear Senator Kline,

I am writing this letter to you and others on the eve of my meeting with Gubernatorial Candidate Jay Inslee.  I have written to you several times in the past couple of years on these very issues but have never received an answer from you which indicated that you read the research or data I presented.

The Developmental Disabilities Task Force, which was formed out of the bill you sponsored, is due to have a report out by December 2012.  This task force has had one meeting at which essentially no work or plans were completed.  I have written to you, the co-chairs and Brittany Yunker, Senate Committee Assistant, for information regarding future plans.  I have not received an answer.  Given that this task force has an agenda to complete and report on (http://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/5459Overview.pdf)  I’m curious when and how this work is going to be done.

In reviewing my information regarding the care of our citizens with Intellectual Disabilities, I have come across some very disturbing correspondence between you and others.  You have written to me about credibility and division and your writing exemplifies these problems and exacerbates the false and misleading “research” which is presented in order to push the agenda of consolidation and closure of the RHCs.

I believe in a continuum of care which upholds both the US DD Act and the 1999 US Supreme Court Decision Olmstead. I understand from your quote from a letter you wrote May 9, 2011 “And again, this whole conversation is only about the costs, leaving entirely un-addressed the notion that individuals ought not to be institutionalized when their needs for habilitation can be met in a less restrictive alternative.   (This is not merely my notion; it’s the constitutional right to due process decided by the US Supreme Court in the Olmstead case three or four years ago, and enforceable by the federal courts in the event the Justice Department should decide to proceed.  But let’s leave that aside and just talk numbers for now.)” that you may need to re-read Olmstead to understand what the decision is actually saying.

It appears to me that you are missing the point that for most of those who live in the RHC, the RHC is the LEAST RESTRICTIVE ENVIRONMENT for them. Olmstead supports the individual/family/guardian and professional’s choice and opinion on deciding what is the most appropriate environment for that person. Nowhere in Olmstead does it state that people should be deinstitutionalized just for the sake of deinstitutionalization.  On the other side, I have not heard any advocate state that people should be institutionalized against their choice either.  I do believe that we all support that in our advocacy.

One of your many criticisms of me is that I do not give resources and citations ( a criticism which I believe is unfounded – if you read any of my research or letters you would see all the citations given) yet you write “The question is whether those higher-acuity individuals remaining in state institutions can thrive in private community placements.  The consensus of parents and professionals is that they can.  There is certainly space for them.”  I’m curious what parents and professionals made up the consensus of this opinion?  Certainly none that chose to have their family member live in the RHC.  Where is the data which supports your statement?

You also write “It is up to us legislators to endorse policies that encourage parents and care-givers to voluntarily choose the community because it’s more productive. This means also that we need to move some percentage of funds from the institutions to the community, as we consolidate the institutions by closing two of them.”  I can tell you as a parent of one of these young folk who need the RHC to survive, I find anyone who would try to coerce me to “voluntarily” make a decision to move my child to a home which would not only be inadequate to serve his needs but be unsafe, as a person who endorses negligence.  Is this the type of advocacy that you believe a person should choose?  Would you choose negligence for your child?

I see over and over again in your letters the phrase “pro-community” and your plea to DD advocates who are “pro-community” to have them write letters to other legislators as in this statement you wrote  “many pro-community folks know they need to explain to all the legislators from Mars that they need an expansion of the community network, which can’t happen while all the money is being sucked up by the RHCs.”  Is this how SB5459 was passed?

I know this letter is a difficult one but these are difficult times.  It is time for you and other to answer the hard questions and to look at data from a different angle.  Times are changing and there is a whole group of young people out there and young families who will not have any services because of the misinformation which has been allowed to take over and control everything.  It is time to listen to those of us who are the experts – those who have young children with intensely high support needs, those of us who’s families have disintegrated from the never ending crisis – both emotional, medical and financial, and those of us who have survived.  The ones who have survived and are here to tell of the survival are the ones who were lucky enough to be allowed to  be admitted to the RHC.

As always, I welcome your comments and questions.  I will gladly answer them and point you to every citation and original source from which I draw my data.  You may also visit my blog at www.becausewecare1.com for many of this same information.

I will be sharing this letter with people in hopes of educating our community to the issues from a more open and honest perspective.  I have also attached a letter which Lance Morehouse wrote to legislators in response to your plea for letters and also my response to Lance.  These letters show differing perspectives from parents with children with high support needs.

 

There is a way to serve all and that is with a continuum of care. 

 

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Lance Morehouse letter to legislators supporting consolidation

 

Cheryl Felak response to Lance Morehouse letter to legislators

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