CONTROL AS AN ISSUE.

     You may already know I'm writing a memoir about my sister Kathy's and my journey together.              
Hopefully, when it's published, readers will find inspiration in its stories.  Right now, what the writing is doing for me is bringing up memories long laid to rest....I thought.
     Today, what came up was our mother's tyranical control of me, especially, as her slave and housekeeper.  I know this sounds mellow-dramatic, but I was remembering when I finally stopped doing anything without first asking her to tell me specifically, in detail, how she wanted it.  This was because I knew if I displeased her, she would smack me around, then use a belt on bare skin, then isolate me from peers.
     As an adult, years ago, I found a way to forgive her; blame wasn't what came up, this morning.  No; it was understanding.   I finally saw that as the parent of a severely disabled child, although she never let it show, she must have felt a terrible sense of inadequacy to meet unexpected demands of special needs parenthood while also managing a household and maintaining employment.   There was so much out of her control, controlling me, especially around housework, with which she could easily find fault, probably was what gave her a sense of being able to control something.  
     Your thoughts?

"MY BABY RIDE'S THE SHORT BUS"

MY BABY RIDE'S THE SHORT BUS   is the title of an anthology of stories by "alternative" parents of kids with disabilities.  I'm finding it well written and thought provoking.  For parents and families of kids with disabilities, parts could be validating.  For people lacking such first hand experience, it could be eye-opening.  If you read it, or already have read it, I'd love to hear what you think.

Sec of State, Ralph Munroe, IDD Pioneer

        This article isn’t a quick read, but its worth your time if you’re interested in the political history of IDD in Washington State..  Former Sec of State Ralph Monroe: IDD Pioneer

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.  

OREGON GROUP HOME ABUSE BELIEVABLE

$45 Million Abuse Law Suit: Oregon Group Home
     State sponsored abuse. Even though the article is about allegation, I find the reporting believable. Several years ago, I interviewed several parents and guardians of people who had been forced out of their state-run institution in Oregon when it was arbitrarily closed to supposedly improve the lives of it's residents who were assigned to smaller venues. Their reports were both sad and consistent with some of the allegations in this article. 
      While it's true that not everyone with DD belongs in a large facility, it's also true that the large, intermediate care facilities around the country are held to higher federal standards than the smaller, privatized homes.   In Intermediate Care Facilities (ICFs) and their DD specialized Nursing Facility counterparts, there is  serious  federal and state oversight with strict regulations, which inspire frequent drop-in oversight within each. 
     How can we cause the states to create preventive oversight of group homes and supported living arrangements in privatized homes, including mandatory unannounced visits?  Such oversight is sorely needed to  protect non-verbal people with intellectual developmental disabilities and others who may be verbal, but who are otherwise too disabled to advocate effectively for themselves?
      In my last post, I referred to my perception that people needing care in residential habilitation centers were being discriminated against.  In regards to oversight, I see the reverse in play.  People who deserve protection, but who happen to live in the community-at-large, whether by choice or by bureaucratic assignment, are being discriminated against by virtue of a comparative lack of preventative oversight  which could help dissuade abuse and/or neglect.  This is a drum I have beaten for many years.  A few years ago, ActionDD whoch advocates in Washington State for all people with DD, no matter where they live, began lobbying for unannounced visits.  We need to create a national clammor for them. 
      I  hope this young man's abuse can be the needed wake-up call that will inspire real revision of  the system in order to prevent neglect and abuse rather than simply wait for a  complaint or report and then investigate it.  It takes a village! And friends, WE ARE THAT VILLAGE.

DSHS Closes Spokane Group Home; Abuse/Neglect

     I wonder how many unannounced visits were made to assure compliance and safety? My guess would be none. I would love to learn I was wrong and that DSHS had adopted new quality assurance policies aimed at prevention of such deaths instead of simply depending on complaints and reports of non-compliance or abuse.

Aug. 15 2019 Facebook Post

Cheryl Felak

August 15 at 12:26 PM

Another death and multiple people hurt due to lack of staffing, training and oversight. We must correct this abuse.

DSHS initiates contract termination of Spokane supported living provider
Release Date:
Aug 13 2019
DSHS Office of Communications
Lisa Copeland
lisa.copeland@dshs.wa.gov
(360) 902-7844
OLYMPIA - The Department of Social and Health Services (DSHS) is terminating a supported living provider contract because of a number of incidents at one of its Spokane residential programs.

Over the past several months, Aacres Spokane received several citations from Residential Care Services (RCS) based on serious non-compliance with the law and regulations to properly care for its nearly 60 clients. Most notably, a 64-year-old woman died following a medication administration error, and for failure to comply with mandatory abuse and neglect reporting requirements.

“We have lost confidence in Aacres Spokane,” said Evelyn Perez, Assistant Secretary for the Developmental Disabilities Administration (DDA). “Not being in compliance with regulations and ensuring the health and safety of our clients is unacceptable.”

Perez added that DDA will work with the clients, families, guardians and providers on a smooth transition, and will offer them opportunities to choose a different service provider.

DSHS will continue to work with communities, lawmakers, stakeholders, advocates and others to provide suitable living options for persons with intellectual and developmental disabilities.

###

DSHS does not discriminate and provides equal access to its programs and services for all persons without regard to race, color, gender, religion, creed, marital status, national origin, sexual orientation, age, veteran’s status or the presence of any physical, sensory or mental disability.

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My Dear Kathy Has Passed Away

     Sadly,  my dear sister, Kathy, passed away last October.  She was very ill for several months before she died.
     Well before her illness was apparent, the demands of her guardianship were becoming progressively more intense.  Since then, I've needed time away from DD issues, time to heal my heart and re-orient to matters so long left unattended in my personal life.  I'm still passionate about the needs of individuals with DD as well as their families; but so far,  I can't seem to involve myself without feeling consumed and needing to  pull back again.  I do look forward to a day when that will not be so.  
     But, at least, this evening, I find it possible to write this much. Later, when I'm more together, I may revisit this post with more about Kathy.  For now, though, it least provides a little explanation and allows for new posts.