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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.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.


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Friday, April 14, 2017

KEEP FIRCREST OPEN: SAVE LIVES

4/13/17
Dear Senator:
I'm writing on behalf of my sister, Kathy, who lives at Fircrest.  She is very medically fragile. 

We're  hearing that some legislators want to sell Fircrest's land to help balance the budget.  The medical or mental/behavioral stability of most of Fircrest's residents is fragile.  It depends on very strict care  parameters that are  specific to each person's condition.  Their states of fragile stability put them at high risk for Transfer Trauma, defined as  "a set of symptoms and outcomes that result from a transfer from one environment to another."* Death is among the outcomes included in the diagnosis of Transfer Trauma.

The stability of most residents at Fircrest is fragile.  Literally, your vote could mean the difference between  life and death for some of Fircrest residents.

 One person died after being moved for  Frances Haddon Morgan Center's closure. He died  a long, painful death after drinking laundry detergent because he was not watched as closely as he had been at FHMC. One legislator tells me she knows of  5 others whose moves resulted in their deaths. However, even one would be an unacceptable consequence.  I hope you agree.

In the last attempt to close Fircrest, 6 people died. The stability of each had depended on very careful adherence to detailed, personalized care and treatment at Fircrest. New caregivers and professionals had received personalized orientation + care plans and histories, but that was not enough.   The requisite experience with each person and his or her condition was missing.  In the absence of that experience, nuanced signals were missed, wrong  decisions were made, treatments were missed or given in the wrong way.  6 people suffered and lost their lives.  6 families lost their loved ones. They were 6 tragedies that could have been avoided.

I'm writing to ask you to spare the lives of all of the Fircrest residents that would be at risk if Fircrest were closed.  Please, instead, support the Fircrest Master Planning process  for which there is money  in  all three capital budgets. Two Master Plan versions are under consideration. Both call for replacement of the nursing facility.  This short term capital investment will result in long term operational and maintenance cost savings.  Both also  call for about a 50% reduction in the Fircrest School footprint with the other 50%  to be available for revenue source development:  WIN-WIN for all concerned.

Please don't try to balance the budget on the backs of Fircrest residents.  OPPOSE 2SSB-5594

WHY FIRCREST IS ESSENTIAL

Dear Senators,

Words that often describe Fircrest residents when they first arrive:  "Vulnerable,","Volatile," "Violent," "Unstable," "Fragile," "Difficult," "Traumatized"  "Anxious," "Dangerous," "Scared," "Hurting," "Over-stimulated", "Dual Diagnosed",  "Physically, mentally, &/or medically ill", "Out of control," "Obsessive," "Paranoid," "Panicked, "Withdrawn," "Frustrated," "Neglected", "Abused," "Suffering," "Desperate," "Terrified,"

 They come from "community" residential placements or jail, or inappropriate psychiatric placements or hospitals.  They come  when their "community" providers have been unable to  provide what they need in order to be successful.    Most of the time, DSHS tries other remedies  first.  When they don't work, after multiple, failed "community" placements, finally they are admitted to Fircrest.   They come to Fircrest for "crisis stabilization."  They come to Fircrest for relief from suffering. 

Today,  there are 30 such people at Fircrest.   With careful help, gradually they find a sense of safety. If they're volatile, violent or  tantrum-prone, they're protected from hurting themselves and others.   Gradually, with the right kind of individual support, trust builds and self-control is learned.

Words that  often describe Fircrest residents after they have become less scared and more stable:  "Sweet," "Bright," "Happy," "Loving," "Eager," "Adventurous," "Timid," "Calm," "Curious," "Shy," "Gregarious," "Capable of learning, " "Willing," "Expressive," "Interested", "Exuberant,"  "Eager to please," "Independent" "interested," "Playful", "Pensive,"Quiet," "well-managed," "safe," "protected."

Most of Fircrest's other 86 residents  arrived in similar conditions.  They stayed on once they were stabilized  because it was the best place for them.  They stayed because Fircrest was the "community" that offered them the care and  supports they needed. Their stability is relative.  It depends on the therapeutic milieu, expert care and coordinated, interdisciplinary teamwork that is the essence of the Fircrest community.

For most people with intellectual developmental disabilities, SOLAs, supported living, or group homes can be appropriate placements. But NOT Fircrest residents.  Creating  more SOLAs, providing more group homes or supported living can't substitute for Fircrest.   If "community" providers could have managed them, they wouldn't be at Fircrest.  They still would be out in the general community. 

If you've been considering closing Fircrest for the sake of balancing the state's budget, please reconsider.  To try to balance the budget on the backs  of these most vulnerable people would be careless and inhumane.

The 2 proposed Fircrest Master Plan alternatives set aside about  50% of the Fircrest campus for development for revenue production. Please let that be enough.

Monday, August 22, 2016

4/14/17 FIGHTING FOR FIRCREST, AGAIN

The official end of Washington's legislative session is April 23.  The Senate bill  by Senator Karen Keiser that would close Fircrest School has been held back from a vote in the Senate so far, but we can't breathe that sigh of relief because it may well be dragged out at the very last minute as "necessary to implement the budget."  Now, why would that be so?  Because there are some legislators who have the lame idea to empty Fircrest out so they can sell the land  to fund education and pass the budget.  "Never-mind about  those pesky residents with intellectual developmental disabilities!    They'll be cheaper out in the "community" anyway."

SEEKING VOLUNTEER BASKETBALL "HERO."

Yesterday, I met a  delightful young man with special needs.    His grandma, whom I met later, is raising him. I believe she told me he is 12 but about 3  years behind his age group because of  autism.  He first spoke when he was 6 years old.  

He came out, alone,  to greet me when I came to his yard sale.  He said he was the "sales man".  Almost professionally, he walked around with me as though we were in a store and he was giving me service.  When I found a jar I was interested in, but it had some dry residue left from it's previous contents, he rushed it into the house to wash it up.   A little later, he took my money  for the jar and a few other things;  with a little help,   he did the math to make change.  I didn't know, yet, that he had autism. His personality was so upbeat and winning,  I hardly registered that he had stumbled on a word or two and made 2 attempts at the math.

One of the items I bought was a wheat grass juicer.  When I tested it at  home I ran into a problem; so I went back, hoping his grandma, who had stayed inside while I'd been there before, could help me learn to work it.  That's when I met her.     She's raising him by herself, has been since he was a toddler.  We hit it off and had a wonderful conversation that ranged far beyond  juicer lessons.   It was in this conversation that she told me about her grandson.

It came out that she's used up her retirement savings parenting him and his brother, who has another set of problems.  Why am I telling you this?  It's because she told me he's crazy about basketball,  and wants to be able to play it with the other kids, but because of his learning difficulties, he needs special instruction to learn how to play the game.  I'm hoping we can network to find him a volunteer basketball tutor/coach.  Whoever says "yes" will be in for a real treat!     Please comment below or message me on Facebook if you can do it  or know someone who can.  I'll gladly provide contact info privately.

They live a few blocks north of the Fircrest campus in Shoreline.

Friday, April 29, 2016

GROUP HOMES STRUGGLE TO REMAIN STAFFED


Detractors call State Run Therapeutic Communities "institutions" as though that were a dirty word.
What we have in WA are 4  state-run, campus based, full service, therapeutic communities especially for people with idd.  In order to garner the Medicaid matching funds, the legislature has to fund them at levels necessary to pass annual CMS audits.  This makes for fewer people without services, fewer people awaiting services in the community-at-large, even if the legislature decides against better funding for group homes, as it has in Illinois.

CHICAGO — Organizations that provide care to people with disabilities are reporting crisis-level shortages of employees needed to feed, bathe and perform other essential tasks for residents in Illinois, a situation that has prompted the closure of some group homes and kept hundreds of families on waiting lists for services."by Vikki Ortiz Healy, Chicago Tribune/TNS April 18, 2016 in "Illinois - Group Homes Struggle to Remain Staffed."

The article goes on to fault less-than-adequate funding in an improving economy, making it expedient for workers to move on to less difficult jobs that pay better.  Unfortunately the situation, the risk and reality of underfunding is not confined to Illinois.  We have seen similar legislative decisions in WA.  Fortunately, we still have our 4 state-run-residential habilitation centers

"The seriousness of a staffing shortage in this arena can't be overstated. I spoke with Tony Paulauski, executive director of advocacy group The Arc of Illinois, and he said: "When staff don't show up, holy cow. People's lives can be in jeopardy. Because of this, there can be medication errors. People aren't able to follow strict dietary requirements. In some cases we're putting health and safety at risk. It's serious stuff."  "Staffing Crisis Hurting Essential Services For People With Disabilities"by Rex Huppke, April 13, 2016 Chicago Tribune.

Forclosing the "institutional" option is a set-up for more deprivation, longer waits for services for people with idd.

Wednesday, April 27, 2016

FRAME THUMBS HER MEDIA NOSE AT RENEWED PLEA


"Do you think Susannah might revisit this story with another perspective? I think the series gave the public a terrible slant on the issues of RHCs emphasizing mostly one side and making WA State seem draconian by having institutional settings." by Marin Wynne

Today is Wednesday 4/27.  Monday, 4/25, inspired by Maryn's words, I included them when I  re-sent the letter below, originally sent to S. Frame  on 12/29/15.  I know it is long.  You may not have gotten to the part where I suggested this:
       "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."  

Although, for the second time,  I got no acknowledgement  to my letter, this morning via google,  I was alerted to K-5's latest infomercial, which I am interpreting as her answer. It is simply more propaganda: Claims that King5 inspired some funding that the legislature directed toward badly needed training for community-at-large caregivers.  The fact is that the funded legislation  had  to be set aside in previous years due to state budgetary shortfalls.  It was not written in response to K-5 at all.   If the series  ever had said anything about poor or lacking training for community-at-large caregivers, we might buy a tiny bit of Susannah's taking credit for the new funding, but since she uttered nary a whisper about it,  only proclaimed high praise for non-RHC programs, by my standards, the focus of this newest video  is  just pro-K-5 spin.  

Maybe it's even a save-face reaction to all the detailed letters by families defending RHCs as having served their loved ones excellently.   http://www.king5.com/news/local/investigations/king-5s-institutions-series-prompts-changes-to-help-disabled/154771606

Today's self-serving show also claims a 400% rise in people expressing interest in moving their loved ones to the community at large.  If it's true at all, it's not such a surprise given their series' glowing propaganda.  However, DSHS has been funding  move-em-out-of-the RHCs programs for many years.  They have a history of adding to their lists of people who  they claim want community-at-large services the names of people who don't want to move their loved ones, who only called to ask a question.  We have  heard this from the indignant families and guardians who, ever since, had been receiving letters that assume they want community-at-large  care for  their loved ones. 
   
That said, despite my  doubts, I sincerely hope that the elevated expectations of all  hopeful people can be met. Some community-at-large programs are praiseworthy.  My only  personal criticism is of the DSHS system that does not take responsibility for assuring praiseworthiness of all of them by providing frequent, drop-in visits to assure safety and program adherence. 

People with intellectual developmental disabilities have the right to choose to live in an RHC or in a community-at-large setting.  "CHOICE" is the operative concept by federal law  It should be so, practically, too. 
What do you think?.

Monday, April 25, 2016

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