Collectively Prohibitive Community-At-Large High Support Needs Costs

April 7, 2016  Response by Cheryl Felak to Frame invitation for story to feature Viewer Comments

Dear Susannah,

I also wanted to add one additional issue that is often misunderstood.  One of the arguments that is heard is that people who advocate for RHCs say that their loved ones are “too fragile” or “too disabled” to live in the community.  It is not the medical fragility or disability  that prohibits the person from living in the “community” but the cost of care and restrictions to the family when there is a person with extremely high support needs.

For instance, during the Developmental Disabilities Task Force meetings that were held in 2012  this very issue was raised.  Lance Moorehouse, then The Arc of King County Parent Coalition Coordinator spoke about having his disabled son living in their family home.as proof of the fact that those with high support needs can live in the community.  Mr. Moorehouse then stated that his son had 19 hours a day of 1:1 nursing care for 17 years that was provided by the Home and Community Based Service Wavier.   The cost of this care is great – certainly much higher than the same care in the RHC yet there was no one telling Mr. Moorehouse that he needed to move his son to what they believed was a less expensive option or one that was against their personal choice.   Mr Moorehouse was not being condemned as being evil or selfish by taking more than his share and therefore making it impossible for others to have any services.    Yet this is the treatment that families of RHC residents receive from so-called advocates.  The  choice of families such as Mr. Moorehouse’ are honored ( as long as there are providers) just as the choice of families who choose to have their loved ones live in a campus community and share services and costs should be honored.  

The Arc of King County (the agency which employed Mr. Moorehouse at the time of the DD Task Force)  is one such agency which advocates for closure of the RHCs based on costs.  It is clear just from this one example that the cost of care for some of the people with high support needs is something that needs to be looked at more closely.  The cost of care for these individuals is well above the “average” cost reported and used as a cost of care analysis for moving RHC residents to scattered community settings.   Continuing to use the average cost of care gives a very skewed representation of the actual costs that would be needed if such an endeavor to close the RHC was undertaken.   If we based the budget on this average it would mean disaster to services and supports  for those who live with intellectual and developmental disabilities. 

The advocates who support the RHCs and campus community settings do so for many reasons.  They are also being more realistic in what can be accomplished financially in community at large settings for those with high support needs.  If we were to advocate for all people with very high support needs to live in a family home, the cost of care would be astronomical.  In theory all people, no matter what their support level, can live in a community home.  In reality, this goal is unattainable and cost prohibitive.

I am including links to three letters that I wrote in 2012  to the Developmental Disabilities Task Force.  These same issues continue to be current.  When I heard that you were doing an investigative series I had hope that these issues of a monopoly, conflicts of interest and biased reports would be exposed.  I’m sorry to say that the series was more of the same and an advertisement for The Arc and their viewpoint.   

https://becausewecare1.files.wordpress.com/2012/09/dear-friends-and-collegues.pdf
https://becausewecare1.files.wordpress.com/2012/09/dear-dd-task-force-september-20-2012.pdf
https://becausewecare1.files.wordpress.com/2012/09/september-25-letter-to-dd-task-force.pdf

Please feel free to publish this letter.  Thank you for your interest.

Cheryl
Cheryl Felak, RN, BSN