Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

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Monday, April 4, 2016


King5's comment page has been disabled. When I contacted Ms. Frame to request it's reinstatement, she cited technical problems and offered to do a special story just featuring reader comments.  Here are mine.  

Dear Susannah,
As you know, I am one of the advocates who supports keeping RHCs open.  One of that  "small, powerful group" that you blame for this travesty.

You raise the question about why the state would spend $97,000,000 in the next 10 years.  Would you question the costs of sustaining the   University of Washington, or any of the state's Universities which are also institutions?    I suspect you would simply accept that the costs were justifiable because of the service provided.  Most people would.  Or do you think we should hire private tutors for all the students?  Maybe the legislature could privatize the universities, establish a system of contractors to  run small, home-based learning centers?  Pay the professors less or even have one supervise many  poorly paid grad students.   Just  forget about sustaining those expensive campuses with all their old buildings.  This may sound silly to you, but to me, it is no sillier than suggesting closure of all the RHCs in favor of subsidized businesses that run residential services for people with IDD.

The most important thing is to recognize the  purpose and value of the institutions in question.  Especially in the case of the RHCs, we need to recognize that their residents are real people, many very fragile, emotionally and psychologically  as well as physically.   They can be harmed by callous determinations.  They are not pawns to be moved about  in order to satisfy somebody's ideological values or somebody else's economic opinions.  In fact, the law dis-allows both of those reasons.  Yet, together, those two  reasons  seem to form the basis for your series.

 If  DSHS would allow admission to RHCs of people who choose them, honor their  American Disabilities Act  Supreme Court Olmstead Decision-ensured right to choose them, the cost, per capita, would be reduced.  Your  series is, quite simply, in support of an industry of vendors.  But it isn't even free enterprise you are championing.  The state determines the rate, chooses the vendors  and pays them.  The competition that encourages excellence in free enterprise  is lacking.  The oversight that would ensure even decency and safety is also lacking.  Steve O'Ban's  bill that was signed into law today, that requires the state to check on some people is a start; but serious amendments will be needed before the  level of protective oversight that is needed ever becomes law.

Susannah:  You say in your ending comments that it is hard for people whose family members  have been in RHCs  for years to consider change.  Your statement  discounts most of our  families,  whose loved ones  are in RHCs, today, because they  were already failed by the community-at large.  Most RHC families have sacrificed and struggled valiantly to keep our loved ones at home.  When that failed, we tried community-at-large venues, often, several.  When  those failures finally forced us to  face the fact that we had to use the services of an RHC, we suffered terrible guilt and remorse.  But then, we discovered that our loved ones were getting what they needed, FINALLY. 

Once they see their loved ones' gains in RHC care, many try to exercise their loved one's Olmstead-ensured right to choose an RHC over a community-at-large venue, but few have the financial resources to bring the federal case to court.  Knowing that, DSHS continues to press it's policy of "diverting"  them to community-at-large venues, requiring  vulnerable people with idd to be failed several times by the community-at-large before allowing them into an RHC.  Why don't those people's experience count for you?  Why do you discount it?

 The community-at-large successes that  you showcased were exemplary.  Somehow, you failed either to find or to showcase the ones that sit idle, day after dreary day,  in their lonely, isolated, community-at-large homes.

Susannah, over and over again, in this series, you have taken potshots at the unions.  The unions are responsible for high continuity of care due to  low caregiver turnover in the RHCs.     As a family guardian of a non-verbal, totally dependent person, I am immensely grateful for that.  In part, my sister thrives because of the relationships she has formed through years of knowing and having her every nuance known by the same caregivers.  Here is something that happens as a result of decent-enough pay:  those long term workers are not just in it for the money; I know from years of experience with them that their ability to stay on the job that is afforded by  unionization also affords them the ability to work with  heart and dedication for each, unique person in their care. 

Of course, there are families who can afford to subsidize higher caregiver wages and benefit packages for their loved-ones living in the community-at-large, but most cannot.  So their loved ones must suffer the constant turnover of workers, stranger after stranger after stranger  assigned to take care of them before moving on to a higher paying job, maybe one with benefits. For the person with idd, the situation is fraught with risk.

Thank you, Susannah,  for having offered to create a story to feature our comments.  I hope you have many such as mine  to use together. I look forward to seeing the story.  If you do it as a video, if you could please pay us the courtesy  of avoiding your practice of using  the least flattering visuals you can create or find of the facilities,  I and other families and guardians  would appreciate it.



Saskia Davis, Family Guardian
ddexchanges @gmail.com
206 364 7762