The Arc wants to eliminate respite care

There is so much that does not make sense but one of the top things with advocacy for people with intellectual and developmental disabilities is that The Arc of Washington is against a bill which will continue to provide much needed respite care for people in our communities.

This graph illustrates the number of community clients who receive care at our state’s Residential Habilitation Centers (RHCs).  SB 5243 aims to maintain Yakima Valley School for residents and respite clients.  The Arc of Washington opposes this bill.  Yakima Valley School serves an average of 32 community clients per month for respite  – without this resource our community members will have much less access to the already minimal respite care available.

Community Respite in RHCs

The Arc of Washington supported the closure of Frances Haddon Morgan Center (FHMC) in 2011.  Frances Haddon Morgan Center had a well respected and much used respite program.  Since the closure of FHMC in 2011, it is clear that the need for respite in other RHCs increased.

Please support SB 5243 and help reverse some of the damage done by the bill in 2011 which caused at least one death and led many other people into crisis.   Advocates should be looking at care, protection, choice and progress – not the opposite.  In my experience, The Arc of Washington is not acting as an advocate.

 

Data Retrieved from Developmental Disabilities Administration

Executive Management Information System

June 2010 – June 2014

 

The count for respite clients for each month is the unduplicated count of clients who accessed respite for the month. 

 2015 Developmental Disabilities Bills of Interest – published by The Arc of Washington State

Integrity – legislation passed based on false information

Our state saw some devastating legislation passed in 2011 in Senate Bill 5459:

  • One man died from negligence – there was laundry detergent stored in a milk carton, left on the counter and this man, who had been moved out of his home at Frances Haddon Morgan Center to a “community” home drank it and consequently died.  This man had a known disability of PICA (eating non-food items) but regardless of that, the fact that a non-food item had been stored in a food container is negligence – not accident.   I can only imagine the pain and suffering this man experienced in the few weeks between the time he drank this and when he eventually died.  He suffered immensely.  Yet does anyone care?  There were no charges filed.  If this had occurred in a day care center I can assure you there would have been charges filed but because this man had a developmental disability and the state was his guardian, there is no one person to watch out for him and advocate on his behalf.  
  • Our state has passed a law which discriminates against our youth with developmental disabilities.  Youth with high support needs who could be cared for safely and appropriately in one of our remaining residential habailitation centers are no longer able to access those services.  The only option left is crisis hospitalization or jail.  Is this progress?

What is also very disturbing is that this legislation was passed based on false information which was stated as “facts”.  These “facts” are not supported by the data from which they were drawn but the legislator who sponsored this bill chose to ignore any information that he found “uncomfortable”.  Others, when questioned about the supposed facts told me that they say no benefit in reviewing the questions I raised because the state did the research and  wondered why I would even question what the state provided.  This is they type of “leadership” we have.  This is frightening.

It’s time to pull their heads out of the sand, face the uncomfortable issues and address the questions.  Until this happens and there is a real dialogue, there will not be progress.

I have written to the Research and Data Analysis Division of the Department of Social and Health Services asking them to review the “research” report which was used extensively in this damaging legislation.  I have written to the Developmental Disabilities Service Task Force raising critical questions that need to be addressed.  I am hoping to engage in some real discussions which will tackle real issues and facts.

DD Task Force Committee wrap up

RDA integrity attachment

RDA Integrity attachment

FHMC Quality Assurance Report to Legislature

Washington State Developmental Disabilties Council

I am dismayed by the lack of unity and foresight that our state’s Developmental Disabilities Council is exhibiting.  I had thought that as a Federal-State Agency, they would be a the forefront of being an advocate for our citizens with developmental disabilities – in fact, it’s quit the opposite.

I had been warned by many of the council’s prejudice against anyone who advocated for a continuum of care.  Being optimistic, though, I thought that I would be able to talk to people and get them to see the truth of what was really happening.  I’m still optimistic but I have had a dose of their reality – meaning that the group is close minded and outright discriminates against our most vulnerable citizens who cannot speak for themselves.

I find this deplorable and irresponsible and I would urge this group to have a huge house-cleaning so that some new blood can help bring quality care and accessible, sustainable care to our citizens.  This group will not be able to reach that goal if they do not change their way of thinking.

They state that they have been recruiting new members – maybe they recruit but they do not ask people to join  – particularly people who may think differently.  I have applied, was not interviewed but did receive a letter from Governor Gregoire thanking me for my application but I was not selected.  My application must have been reviewed by the council though because this year, the vice chair (who I have never met or spoken with) wrote to me “Thank God you were not chosen to be on the council” along with some other choice comments and derogatory remarks.  Remarks that I also find irresponsible of the vice-chair of the state council.

While in a DDC meeting, there was an announcement that Frances Haddon Morgan Center would be closed by the end of the year.  One woman council member raised her arms and cheered – cheered at the demise of our loved ones – what type of advocacy is that?

Please, if you believe in advocacy which supports our citizens and looks to quality, sustainable and accessible care, consider writing to Ed Holen, Executive Director  or other staff members of the Developmental Disabilities Council with your concerns.  They need a dose of reality.

DDC Letter November 18

Thank you,

Cheryl

Please write to:

Developmental Disabilities Council

PO Box 48314
Olympia, WA 98504-8314

Ed Holen, Executive Director Ed.Holen@ddc.wa.gov

Jennifer Blazian, Contracts Manager Jennifer.Blazian@ddc.wa.gov

Sieng Bonham, Budget & Fiscal Director : Sieng.Bonham@ddc.wa.gov

Brian Dahl, Support Coordinator : Brian.Dahl@ddc.wa.gov

David Maltman, Policy and Community Partnerships Manager David.Maltman@ddc.wa.gov

Donna Patrick, Public Policy DirectorDonna.Patrick@ddc.wa.gov

Phillip Rasmussen, Receptionist Phillip.Rasmussen@ddc.wa.gov
Eva Rooks, Planning and Communications Manager Eva.Rooks@ddc.wa.gov

Linda West, Membership Services Coordinator  : Linda.West@ddc.wa.gov

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper

When I read this article and see no mention of SSB 5459 in this – I realize that the bill that was so critical in my mind was of little significance to the state as a whole.  I have a hard time coming to grips with this and then wonder, if this bill was of such little significance, why didn’t legislators listen to the sensible and responsible facts that were brought to their attention and vote NO on SSB 5459?  There must be another reason that overrode responsibility, basic human and civil rights, personal choice on residence as guaranteed under the Federal Olmstead decision and the Centers for Medicaid and Medicare Services guidelines.

If anyone could enlighten me as to what deals were made which caused this bill to pass I would love to know.  Maybe if I understood what was exchanged in order for a responsible, humane and sensible person to vote yes on this bill,  I could understand why innocent people were made scapegoats for such an “insignificant” bill.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper.