PLEA FOR King5 PROGRAM REORIENTATION TO HEAL THE RHC/COMMUNITY-AT-LARGE CONFLICT

Written by Saskia Davis  12/29/15,  3.5 months before the Frame-King5 invitation to post dissenting comments. 

Dear Susannah,
     In writing to you, I am inviting you into my heart, hoping you will be able to shift from anti-RHC bias in your reports to being able to acknowledge that  “RHCs have an important place in the full continuum of care for people with intellectual developmental disabilities.”  I am not advocating them as homes for people with no intellectual disability, as were featured in your #2 and #5 reports.  People without intellectual disabilities have not, for decades, been RHC residents.

     When you interviewed us, as families and guardians of people who live in RHCs, you asked us to raise our hands if we were concerned that our loved one might die in the community-at-large.  We all did.  Had you asked our reasons, mine would have been fear of abuse and neglect, for that is what my sister sustained that led to her entering Fircrest. She has cerebral palsy, profound intellectual disability with functional age around 1-3 years, epilepsy, bipolar disease.  

     While I was out of state in college, and my mother was failing, the vendor for my sister's care moved her out of her warm, first floor room to the attic.  She must have been there for weeks.  When my Dad and I pushed our way in past the door, which was blocked because, "You didn't call first," we couldn't find her.  As we rushed, room-to-room, the woman finally admitted she was "upstairs".  We found her, alone, tied in bed in an unheated, attic room, skin and bone, and so withdrawn she would not make eye contact or try to speak.  She had lost 30 lbs, from only 90 lbs to begin with.  We found her just in time.  Rushed her to Children's ER.  From there, she was admitted to the main hospital.  

     Had there been preventative oversight with unannounced, drop-in visits, she might never have had to go through that! 

     The ARC is big on community-at-large-only placement, but they never advocate for preventative oversight that includes drop-in visits.   Ask, "Why?" 

     They are vendors. They represent vendors. That is not the whole story, but with the money they bring in through professional fundraisers and from membership, many of whom are vendors, they are very influential with other organizations and agencies.

     RHCs are rigorously audited. Funding is tied to passing audits.  Routinely, the audits raise the bar, throw a new, higher standard at the RHCs, which cause them to regroup and find a new and better way of working with people. That is the reason 3 RHCs currently are in limbo, unable to admit residents, until their new programs are ready for inspection. RHCs, once, were every bit as bad as you would have people think they are today (your opening report demonstrates what I mean.)  But thanks to rigorous audits, tied to funding, they are the safest venues, today.   Audits motivate the RHC systems of preventative oversight.  

     Also, thanks to the audits, RHCs set a high standard for community-at-large vendors to live up to.  The problem is that they are not compelled to do so. 

     I assume other RHCs are similar to Fircrest where my sister lives.  Her house has a manager in-house, on duty 40 hours a week and sub-managerial staff in charge the rest of the time, backed up by campus-wide supervisory staff.  There are unannounced, supervisory, drop-in visits throughout every day and night.  On the night shift there is a system of barcodes with a hand held computer with all the houses programed in.  The supervisor can inspect and check off boxes for everything about a house and it’s residents, plus write extra notes.   When the device is docked, all the data is automatically sorted and sent to appropriate personnel for their review.   Because there is preventative oversight, there is incentive to stay on track with all that is supposed to be done for each resident and negligible opportunity for any neglect or abuse. 

     In addition, there are too many eyes everywhere for abuse to happen without someone quickly becoming aware.  All caregivers and managerial staff are mandatory reporters.  In order to avoid the remote possibility of a manager burying a complaint, the rule is that a complaint must be made to the hot line before it is passed up the chain of command.  

     By contrast, in the widely dispersed supported living arrangements  of the community-at-large, there are very few eyes to see and report abuse or neglect. 

     The "community-at-large" was designed with conscious attention to not having to pass the level of strict audits required in facilities with more than 16 residents.  This means fewer and less strict audits.  The 1988 rationale for this was to save money by not having to satisfy the strict, RHC-level audits. 

     The community-at-large system of "quality control" is reactive, not preventative.  No unannounced visits are permitted.  I have not seen a policy in writing, but it is what we are told by auditors and social workers.  Instead, complaints are supposed to be investigated.  In a recent hearing, I heard someone from the office in charge of investigations admit to being thousands of investigations behind.  

     There is every likelihood that non-verbal residents  with profound intellectual disabilities who lack  family to visit them will never be able to complain.  But even when an investigation is made, the fact that it was generated by a complaint means that someone probably has already suffered abuse or neglect. If no drop-in inspections are ever done, long before any complaint is made for investigation, the problems could be worse than for my sister,  even as bad as was featured by King 5 here: http://www.king5.com/story/news/local/investigations/2015/11/24/dshs-disabled-teen-abuse-2012/76292386/ .  Of course, most vendors and their staff are honorable, caring people, but as illustrated by my sister’s story and that of Heather Curtis featured by King5 at the forgoing URL, not all are to be trusted.  How many situations like my sister’s and Heather’s do you suppose there could be out there in widely dispersed, barely overseen community-at-large venues? 

     It is a carefully nurtured myth that RHCs are too expensive, using up resources that  unserved people need.  For many many years, community-at-large cost reports have left out costs that do not affect the DDA budget.

     If your goal is to help the public understand the costs, it is important to look at all of the costs including those that are shifted to public services such as emergency departments,  police and fire departments,  public transportation. What Senator Chase told you was fact, not mere opinion. It takes diligent, persistent, well-informed digging, time and insistence to get to the costs that are omitted. I understand that you have not known this.  But, until that digging is done and all the unreported costs have been aggregated, it is misleading to compare the incomplete community-at-large data with RHC data which include all costs. 

     Relative to the needs of the individual, quality of care and  quality of life should be the primary considerations. As a quality of life consideration, safety of people with intellectual developmental disabilities should take priority over cost.  As mentioned previously, reactive investigating of complaints does not incentivize safety.    How much higher would community-at-large costs go if there were a real system of preventative oversight, one designed to protect vulnerable residents instead of the vendors?

     If, for whatever reason, a real, preventative oversight system is treated as impossible, which is better:  terribly vulnerable people at risk in community-at-large placements that are rarely inspected and, then, only with warning, or RHCs where their environments might have to be shared with more people, but they can be better protected?  

     Susannah, on camera, you appear to have taken a position that community-at-large should be for everyone and RHCs should be closed. When we met, I saw you with your heart open.  I saw you caring.  Because I saw that, I think I am right, that you could make the  shift from a community-at-large-for-all position to supporting RHC homes for people that need and want them as well as community-at-large homes for people that need and want them.  In doing so, you would be in step with the Olmstead Supreme Court ruling.

     In large part, the war against the RHCs is stalemating progress for everyone.  If you could make that shift for the balance of your series, you could set the public stage for healing of the divide.  Instead of furthering divisiveness, you could be helping achieve mutual respect and understanding. The result could be that all the energy that has been tied up in the war against RHCs would be used for improving on what we have in all venues so that people with IDD who need residential services can have them when they need them, where they need them and they will be safe.

     Susannah, from my perspective, that would be award-winning reporting. You would be doing society’s most vulnerable people a great service.   I hope you will find it in your heart to resume in the new year from this healing perspective.

 *(I am using the term,  "community-at-large" to differentiate between those and the RHCs which are "campus based, full service therapeutic communities,” and as such, part of their  larger, surrounding communities.) 

Have a happy  New Year’s holiday,

Sincerely,

Saskia 

Saskia Davis, RN, "Fircrest family guardian

CC:  Russ Walker Executive Producer / KING 5 Investigators