RHCS: WHAT'S SO GREAT ABOUT "NORMAL" PEOPLE?

 Waiting for Funfest Barbecue Lunch @ Fircrest

     Until her death 11 months ago, my sister, Kathy, lived at Fircrest School in one of the homes in its award -winning nursing facility.  For those who aren't familiar with Fircrest, it's a residential habilitation center  (RHC) in Shoreline Wa, just next door to Seattle.
 

     So what is an RHC, exactly?  (If you're already well acquainted with today's RHC's, skip to To me, it should not be an "either/or: RHC vs community-at-large" argument)

RHCs in Washington are campus- based, full service, therapeutic communities.  They are specially designed to meet the individual needs of people with severe and complex intellectual, developmental disabilities.  At least,  that describes the four that are run by the state. 

     Technically, they're institutions, just as hospitals, libraries and schools are institutions.  Today's RHCs are nothing like the institutions of bygone eras where people with developmental disabilities  were warehoused in dreary, prison-like environments and without habilitation services.    Quite the opposite, today's RHCs are geared toward habilitation where that is possible and toward comfort and quality of life that includes stimulation and entertainment where habilitation toward independence isn't a realistic goal. 

      Every resident has an individualized ("person centered")  habilitation or care plan that takes into account his or her likes, dislikes, preferences,  desires, abilities, disabilities and goals.  Where needed, individualized, humane and innovative behavior modification programs are enlisted to help residents learn to manage their own behavior  in order to be able to enjoy  participating in community life. 

     The range of needs of the people they serve is broad. In the part  of Fircrest that is a DD, full service nursing facility, there are many with severe physical disabilities such as quadraplegia, cerebral palsy and epilepsy, all complicated by intellectual disabilities (formerly known as mental retardation)  and some complicated by medical and/or  psychiatric disabilities as well.  Their care is very specialized with nurses assigned to each home and doctors on call at all times.  

     All of the residents of the intermediate care facility (ICF) part of the campus also have intellectual disabilities.  However, for the most part, they're less physically  and medically disabled than their Nursing Facility counterparts.  Many have arrived after their  behavioral challenges  were proven too difficult for vendors of care services in the community-at-large to deal with.  Usually, the only way the State (Department of Social and Health Services [DSHS])  allows  admission to an RHC is on a temporary basis to stabilize a crisis.  And, most often, the crisis is behavioral and/or psychiatric in nature.   Although the state insists new RHC  admissions be temporary, crisis stabilization for people with such complex disabilities most often is a long term process.  

     If you're reading this, you probably already know there are people who strongly oppose RHCs.  Frankly, I have never understood their perspective.

To me, it should not be an "either/or: RHC vs community-at-large" argument.  RHCs serve people who  already have been proven not to be well served in other environments.  Why not continue to accommodate them where they can thrive?   Other's do well in the private homes of their families of origin and still others in privatized residential care venues in the general community-at-large.  

    Usually, the latter are simply referred to as "community" settings.  My use of "community-at-large" is to help differentiate those settings from RHCs, which also are communities.  The difference is that RHCs are peer communities in the same way that senior communities are.  We don't hear people objecting to seniors congregating in communities of their peers.  So why object to people with intellectual developmental disabilities living among peers, especially when their lives are full with activities and services designed to help them live happily?  Oh, I know the standard reason is that they should be able to be part of the community-at-large.  Usually, those who say that mean they should be able to participate with "normal" or "typically-abled" people.  And for some, I don't disagree.  As mentioned, there are others, though, for whom life with peers in an RHC is the better choice.  

      An example: Kathy  had a kind of cerebral palsy called "spastic quadraplegia."  What little she could do for herself required help, her movements were awkward and speech was monumentally difficult.   Even though, mentally, she was a toddler,  she usually enjoyed people and always wanted to make them happy.  Many caregivers  told me that when they needed to be cheered up, they came to Kathy.    In  her peer environment, she so was highly social,  I hadn't  realized how important  her peer community was to her.  
     Here's how I learned  she felt  the difference between her severely limited abilities and those of "normal" people.  Since eating was one of her most pleasurable activities, I assumed she would enjoy going out to eat in a restaurant.  Because she was  non-verbal and mentally very young, I couldn't just describe it to her and give her a choice. Instead, I worked with her, helping her gain the ability to walk  far enough to enter a restaurant.   We worked for months on that goal.  When we finally reached it, I took her to a place where I knew the wait staff would be supportive and the food would be just the right texture in flavors she would enjoy.  Excited, eager,  with my help, she walked into the restaurant and sat down at the table that had been reserved for us.   The wait staff were wonderful with her and the food was just as perfect as I had planned.  But Kathy couldn't eat. I could see her face fall as she looked around. The contrast between  her and all those "normal" people was too great.  Since her language skills were practically non-existent, I couldn't ask her what her feelings were.   But I suspected something like "humiliated self awareness."

     Her reaction raised these questions in my mind:  "What's so great about participating with normal people if the contrast causes one to regard one's disabilities so painfully?  What's  so wrong with having the comfort of peers?"  After that experience, I was happy to accommodate Kathy's preference to stay in the car whenever we went out for a bite. I would simply order out and we would eat in the restaurant's parking lot. Eating together in the car, she would enjoy her meal so much, sometimes, I would have to withhold her food until she stopped giggling so she wouldn't choke.   And eating at home with her housemates she was just as happy.

     I'd love to hear what you think.