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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Monday, August 22, 2016


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."


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


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


"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


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,



Saskia Davis, RN, "Fircrest family guardian

CC:  Russ Walker Executive Producer / KING 5 Investigators

Sunday, April 24, 2016


Response on April 11  by Jeannie Barrett to King5 invitation to post letters from RHC supporters.

Sorry to be so late posting this, Jeannie.  I thought I had done it already.  Excellent information!

Dear Mr. Walker:

Those of us who have severely multi-handicapped sons and daughters have grave concerns with the closing of our Residential Habilitation Centers. Susannah Frame’s investigative reports are most damaging to their welfare. It took years of work for our predecessors to establish a community that was appropriate to their special needs. My son is typical of those living in an RHC. He has been a resident there for 53 years. His many medical problems do not allow him to even have the idea of moving to a community home. To commit him to a nursing home is not appropriate because most of the time he was able to go to school or go to work. This was only possible because of the support and dedication of a specialized medical and attendant staff. Perhaps a brief history of RHC’s will help KING TV to understand the dire need for our Residential Habilitation Centers. King TV should be vigorously supporting the miraculous work that the staff can do besides just making the residents happy. For those who can live in the community, that is just great, but many of us have found our loved ones in life threatening situations in a community home – as has been verified my many news reports.  I hope your station will become more enlightened and report the true story of our RHCs. It is not fair to give only one broadcast compared to the flood of Ms. Fame’s negative reports.  Her “science” is flawed.


Jeanie Barrett, Mother of son living at Rainier School RHC


by – Jeanie Barrett

Mother of Rainier School Resident

I am one of those who have quite a long a historical perspective of RHC care of extremely vulnerable individuals who are medically fragile, multi-handicapped and who may or may not have a profound intellectual/developmental disability. I have also been a part of the significant disability care changes throughout the years - as a mother, as a special education student and later as a classroom teacher.

Intellectual/developmental disability research and personal care techniques took a big leap forward about the time I graduated from the Speech & Hearing and Special Education programs at the U of W. in 1982. The U of W was a national leader for disability research and multi-handicapped training. I was associated with the Experimental Education Unit at the Child Development and Mental Retardation Center (CDMRC). Research was happening in other university departments as well. Some medical research students spent time at Rainier School.

These were exciting times. The new therapeutic life-changing discoveries from the U of W and other universities were being implemented in Washington state RHCs as fast as they could be introduced. Rainier School employees in turn shared their own successes with U of W students. The principal of our campus resident school taught several of my special education classes at the U of U. To this very day our pharmacist is an adjunct professor at the U of W and also teaches project students from the University of North Carolina. During this period dramatic physical changes took place on our campus. Residents were moved from large dormitories into newly built homelike cottages. Other buildings were constructed: hospitals or health centers, schools, vocational training and recreational facilities, and churches. Marvelously complete, active communities blossomed. Rainier School opened a Thrift & Gift Store in a nearby shopping mal and assigned residents to train and to work there.  Additionally, specialized professional and attendant staffing was increased. Similar changes occurred at the other RHCs as well. Please read through our detailed Rainier School history book:  "Over Fifty Years of Caring" by Howard Baumgart. Purchase from our parent group: Friends of Rainier, P.O. Box 516, Medina, WA. 98039 - and visit our small Rainier School campus historical display. We are so proud of our staff’s accomplishments and thank our legislators for their foresight and sensitivity for providing comfortable homes and a workplace that were appropriate for the many special needs of severely medically afflicted people.

My multi-handicapped son, Lonnie, became a new resident at Rainier School at this magnificent time. He was 14 years old and has lived there the last 53 years. Without question he has experienced the most healthy, productive, least restrictive life in a safer environment than he ever could have in an isolated community home. He has been FREE to make most of this own choices, (what to eat, who to visit, where to travel, etc.), FREE to visit the Coffee Shop and take a swim in the therapeutic swimming pool, FREE to explore a safe campus on his own when he was able, FREE to grow his own garden, FREE to attend campus entertainment events e.g. picnics, parades, dances. FREE to train for productive work in a variety of locations. Things were not fancy but they were serviceable. Trained, caring attendants were always nearby. Professionals - medical, psychological, social, recreational and even maintenance workers - provided care that was expert and appropriate. I need to write another paper about all the training, personal care and respect Lonnie has received for so many years from our remarkable staff. Much has been left unsaid. By contrast, two community home placements were life-threatening experiences for Lonnie.

It would be more productive and economical if money, time and effort would be spent in a more positive way with promoting the positive, therapeutic benefits of RHCs for all of the most vulnerable of our vulnerable people.


Accusing families of bashing the station, Susannah Frame and  King-5 TV in WA  finally have  kept their promise to post letters from dissenters refuting  the station's  RHC-bashing series: The Last of the Institutions.  They have posted a long list of commenters, each with a separate link to their letter(s) + the ability for readers to comment. In addition to those posted on this blog, there are several others.   Anyone wanting some real perspective and accurate information on residential habilitation centers  for people with IDD would be well advised to read all the letters. Also to bookmark the page for later reference.  They may come in especially handy with legislators.

Also, Susannah says  she is willing to post more letters if additional people wish to write to her. sframe @king5.com . You will have to close the space before "@".  If you would like your letter to be included in those collected on this blog, please email it to me at:  ddexchange @gmail.com.  (close the space before "@".


Friday, April 22, 2016


Having written, yesterday,  to Susannah Frame asking for a link to the viewer comments that should accompany the little intro to her promised viewer comment article that was  posted @ King5.com, I received this back from her this morning:

"Hi Saskia I wrote what you see there. And I've assembled all of the comments but someone else has to attach the two together so I am hoping someone from our web team can do that today."

 In the meantime, Cheryl Felak has ferreted out  and posted on her blog 20 letters  from RHC friends, families and guardians that King5 somehow posted individually and apart from what Susannah wrote.  https://becausewecare1.com/2016/04/21/families-bash-king-5-for-series/ .

I think they should be available to King-5s wider audience, and hopefully, they will be, but in the meantime, a big round of applause to Cheryl for having found and posted them!

Tuesday, April 19, 2016



Written April 10, 2016 by Bonnie Sullivan in response to King5, Susannah Frame's invitation for a story on viewer comments.   Received today: Another salient letter! 

Dear Susannah,

Re:  “The U.S. Supreme court ruled in 1999 that unnecessary segregation of people with disabilities is a form of unlawful discrimination. Since 2009, the Department of Justice has executed more than 40 legal actions in 25 states to ensure states integrate this population into community settings.”

In the last segment on RHCs you mentioned the Supreme Court’s decision but did not quote the last part that states “there will be those who will always need residential facilities.” (paraphrased) Those who wish to live outside of a residential facility have that right.  Those who wish to live in an RHC have that right as well. 

I am happy for those you’ve interviewed and televised showing they love where they live now.  Obviously, they should have never been in one of the facilities or improved so much in an RHC they could now live safely out of one.  For many years there were few homes that would take those with developmental disabilities. Now there are some good homes.  Many of our most vulnerable would not thrive in one of those homes. They need the safety of a campus where the staff has the expertise to meet their needs. You saw many of those individuals and neglected to feature them. You heard the residents and parents/guardians talk about their satisfaction but never mentioned those in your segments.  Why?  Was there a bias for living in the community rather than in an RHC?

Our staff is continually learning to assist the residents in better ways. There is oversight in each facility that you cannot find in most homes in the community.  Staff has longevity and therefore is knowledgeable about its residents.

Several past residents talked about their work and activities they enjoy that were unavailable to them when they lived in an RHC. Any of our residents who are able to work are given jobs they enjoy which also increase their skill levels.  Many activities are frequently available to them.  When my sister lived at Lakeland she enjoyed the Fair, boating, shopping, dances, and picnics, etc.  There were times she didn’t want to leave her house and therefore didn’t have to go.

We advocate for all those with developmental/intellectual disabilities and especially want our loved ones to be happy and safe wherever they choose to live.  At this time our loved ones choose to live in an RHC. 

Friday, April 15, 2016


Readers Can Talk To Each Other On This Blog

Of the 14 letters, below,  addressed to Susannah Frame, 2 are from me.  The other 12 were sent to me in response to my invitation to post them on this blog.  King-5/Susannah Frame invited readers comments.  This was in response to my having written asking them to restore  the readers' "Comments "page on their stories in their Last of the Institutions series of deceptions about RHCS.  The "Comments" page  had allowed readers to see what they and other commenters had written and respond to each other.  It was the one place where the rampant misinformation in their stories could be corrected for public viewing, so it was a serious loss.   By comparison, this  blog's readership is small, but the option to comment on each other's posts, and so, converse exists here, as well. Please feel free to use  the comment section below each blog.  If you want  add your own letter that you have sent to to Susannah or King 5, or  add a  a new post about something else, please just send it to me at ddexchanges @gmail.com   (close the space first).  I will post it for you.    

Tuesday, April 12, 2016


Response by  Sharon Juza to S. Frame invitation
for viewer comment story.

The story that you ran about "Institutions" contained so much false information I found it very disturbing and upsetting. First of all their are NO institutions  in our state; they are residential habilitation centers. No matter how many people have stated that fact and tried to educate the reporters at King 5 everyone still insist on referring to our RHC's as Institutions. Why is that? I find it very offensive and hurtful.

Yakima Valley is my Son's home. Why do some people want to take away his home? My Son has a multitude of disabilities and can not care for himself at all. He needs 24/7 care. Everything from personal hygiene, feeding himself and medical care which is on site whenever it is needed. They also have dental facilities.

If he so much as gets a scratch on his hand I am notified immediately. This does not happen in a community living situation. He has his own bedroom a living area that includes a bathroom that is equipped with all the necessary equipment for bathing. He is not locked away like some people choose to believe nor are there any locked, chain link fences anywhere. The only fence they have is a 4 ft tall fence around their backyard, that you can see over, for their safety. He is free to go in and out to the backyard whenever he chooses. Weather permitting of course.

 He and all the other residents are taken out a lot to various places in the community. Going to the Fair is just one of many things he does.  The staff is very dedicated and most have been their for several years. They treat all the residents with care and love. They have a low turnover rate unlike other place's such as privately run group homes.

I kept an open mind and wanted to look at some community living homes. When I contacted DSHS and asked for the address of some homes they would not give me any and told me I had to go with a Social worker. There's a big red flag. They make an app. and take you to the ones they want you to see. That gives them plenty of time to alert the staff so they can do whatever they need to in order to impress you. I went there on a nice sunny day and all the residents were sitting in front of the TV.
I looked at 5 different homes and none of them were safe. A very dangerous kitchen, coffee pots and various other items on the counter tops. And open  access to  the laundry room. No safe backyards.

Don't we all want what is best for our children?  Especially to be safe and happy? That is what RHC's provide for those that need it.

 Sharon Juza

Monday, April 11, 2016


April 11, 2016:  Response by Saskia Davis to S. Frame Invitation for Viewer Comment Story

Hello, Susannah,
This is a new comment for publication in your story on comments.

About half of the homes at Fircrest School are in it's campus-based  Nursing Facility.  In  their  closing remarks, Feb. 4, this year,   Federal Standards Auditors  referred Fircrest's Nursing Facility as "the cadillac of nursing homes."   This year, Nursing Facility auditors could find only one small area to cite for improvement.

The other  homes are in the Intermediate Care Facility.  Last year, new auditing standards were the cause of citations that resulted in  admissions  holds being elected by Washington's  3 state-operated  Intermediate Care Facilities'  administrations. Given a choice between risking decertification by being re-audited in 90 days or taking more time to develop programs that they could be sure would meet the new standards, all of the RHCs chose the latter option, even though it meant that admissions would be frozen for the length of the time until  re-audit was requested by each facility.  Fircrest School is now ready with it's newly developed  programs  for the reaudit. The auditors do not announce when they will arrive, but they are expected to return soon.

From the point of view of parents and guardians of RHC residents, the fact that, historically and currently,  the Federal auditing standards are frequently raised is a good thing. It means that "institutional" care and quality of care  keeps getting better and better. Because of the audits, we sleep better at night.  We worry that there continue to be fewer audits and by lower standards in the community-at-large residences that are operated by state supported businesses.  Residents of those facilities deserve the same protections as those afforded RHC residents.

Thanks very much, Susannah.  I'm looking forward to your  story featuring our comments.

Saskia Davis, RN, Family Guardian


April 11, 2016: Response by Duwane Huffaker to S. Frame Invitation For Viewer Comment Story

Dear Susannah:
I worked at Lakeland Village for 37 years.  During that time I was active in the Washington Federation of State Employees.  After I retired I became vice president of the Lakeland Village Associates.  As an RHC advocate I find it rather sad that so many are willing to deny the rights of those who desire services offered within our Residential Habilitation Centers.  It's as if the folks living in our RHCs are second class citizens who don't know better.  During my Union active years, and afterward, RHC advocates have expressed our willingness to work with all involved parties to improve services for all people with developmental disabilities.  Our condition that this be on a live and let live basis definitely meets the test of reason.  Time after time the anti-RHC crowd refuses to fully accept the rights of those who want RHC services.  This does not enhance the eNvironment for all people with developmental disabilities.   We believe in choice.  No one should be forced to live in a RHC who does not want RHC services.  But choice is a two way street.  No one wanting RHC services should be forced into community based services.  In the Olmstead Decision the U.S. Supreme Court recognized that some will require RHC level services, either permanently or temporarily.  The right to RHC services, if qualified, is established.

NOTE:  this email is for publication and can be used in the viewer comment story.

Thank you,
Duwane Huffaker
Vice president LVA


April 6, 2016:  Response by Elizabeth Jackson to S. Frame invitation for viewer comment story

Ms. Frame,

Your series has been disturbing to those of us who found nothing but trouble with our developmentally disabled children in the community setting, and finally had found some peace and hope at Rainier School.  Think of being the parent to a retarded, autistic adult child, diagnosed at the 3 to 4 year old level, being called in the middle of the night to come get that person because she had become frustrated and torn up a bedspread.  Then that same adult child being dropped off at Harborview to await a bus to Western State Hospital with nothing more than her father's work phone number pinned to her coat and a plastic bag with her belongings.  Think of visiting that adult child in the Western State setting of mentally ill patients, who is scared because she does not fit in there in any way, and the wait of 2 to 3 months to find another placement for her.  Think of visiting her in another community placement where she was drugged so heavily she could not respond to us and spent the entire visit shaking her head trying to shake off the drugs.  That institution also sent her to Western State Hospital, so we had two sessions of that.  Think of visiting her every weekend at another community placement, being told every time that she was doing just fine; then getting a call from a hospital psych ward that she had been dropped off there because she had torn up a pillow.  Her autism makes it impossible for her to vent her frustrations and she will occasionally tear property - usually her own clothing.   The trouble always seemed to be when she tore something that was not hers.

The hospital stay saved us; they worked to help us get her into Rainier School, where she has a job that makes her feel productive, friends in the same cottage she has lived in for years, can self transport around campus, including going to the canteen for her beloved can of pop.  Her behavior issues have improved considerably because they work with her, and they keep her medication level to the lowest possible level.  This is reviewed annually and we are notified immediately if there is a problem and given the opportunity to work with the school; however, we are never threatened with her not having a place to stay and she is not sent away.  Her father has died, and I continue as her guardian along with  my daughter.  She is glad to see us when we come, but ready to go back to her home after the visit.  That is the best we can hope for.

Community placement is undoubtedly good for some DD residents, but not for all of them.  Destroying places like Rainier School would be a terrible disservice to residents like my daughter and others like her.  Please find a place for this information in your investigation, and give us a voice.

Elizabeth Jackson


April 6, 2016: Written by Paul Strand in response to S. Frame invitation for viewer comment story

Dear Ms. Frame,

There is a broad spectrum of need among people with developmental disabilities.  Most live at home or with others in a house or apartment.  A few, about 4%, require closer care in one of our RHCs; what you call “The Last of the Institutions.”

They are not as they often are portrayed. They are not fenced in, there are no large dormitories or big buildings to live in, and no one is isolated. There are doctors, nurses, therapists and caregivers on duty at all times.  Best of all, it costs no more to provide campus based service than it does for community provided services.  DSHS has agreed with this, where close care is needed.  Even the United States Supreme Court agrees (Olmstead Decision, 1999)

Several years ago we replaced the so called institutions with community homes. You interviewed some of these residents, who are happy to be on their own.  But for those with need of more intensive care, we built homes with individual bedrooms, kitchens and other amenities, much like a house on any American street. These amenities are difficult-if not impossible - to duplicate elsewhere.

Instead of degrading the RHCs we should be thankful that we have them.  Not all states are so fortunate.

Paul Strand, President

Sunday, April 10, 2016


April 8, 2016: Response by Cheryl Felak to Frame invitation for Viewer Comment Story

Hi Susannah,

I realize that I have sent you several letters in the past few days.  Please, if you have any questions about any of the information I would be more than happy to answer them.

One last issue that I would like to pass along for the sake of transparency and that is concerning the cost of care.  As you may recall, my son has just recently moved out of Fircrest into a supported living home.  The information on the cost of his care is just starting to come in an I am not surprised at all.  I knew that it would be expensive for his care in the community  and I am right.  But, then again, the care is better and of a higher quality.

Thomas lives in a supported living home.  The agency receives $418.15 a day for his care.  The nurse delegator receives  $26.58 per day.  These two expenses come to $13.786.65 per month or $165,439 per year.  On top of this, my son needs to pay his own rent from his Social Security ( a rent that is subsidized by HUD), buy his own food (but he will receive food stamps).  He will utilize his medical and mental health care providers in the community – billed to our insurance and Apple Health and his medications and incontinent supplies will also be paid for by Apple Health.   Adding all these costs up his annual cost of care in the community will be greater than that of the cost of care in the RHC.

Interesting to note is that the Shoreline Police have already been called to his home due to being hit by another resident.  There was no fault but only caused by the excitement of two adult sized men who have the emotional maturity of 2 year olds and often their communication involves swinging of the arms or hitting.  My son was hit in the head and had a bruise on his ear.  It was not a serious injury at all and there was  no blame but it is the law that the police are notified and a report is filed.  In all honestly this was much less of an issue than some of the injuries he had while at the RHC but I am not aware if the police need to be notified of all injuries for client-to-client “assaults”.  At any rate, this does show the increased cost to the community when other agencies need to respond and support these folks.

I am writing this to you so that you are aware that it is NOT LESS expensive for those with high support needs to live in the community.  The care is better, the health care meets standards, the providers work with the guardians and include them in correspondence and collaborate  - to me that is worth the extra cost of care.  

We need to be honest about what the real story is.  If the RHCs closed and others (many with higher support needs than my son) moved to the community there would be a huge cost increase.  To report otherwise is misleading and negligent.

Thank you again for the work you did on the series.

Cheryl Felak, RN, BSN

"CRUEL MYTH:" Glories of Community Placements for EVERYONE with IDD

 April 10, 2016:    Written by Leone McMullen in response to Frame invitation for story based solely on viewer comments.

Dear Ms. Frame,

We are deeply disturbed that King5 continues to air this series, one dreadfully inaccurate segment after another.

Your emphasis on the glories of community placements for EVERYONE with developmental disabilities is for many, a cruel myth.

Our daughter Amika is a case-in-point:  In the last 18 years, she has been moved in-and-out of Eight different community living agencies. (Here are a few:  Share &Care, Walsh & Assoc., Aacres Alvest, Service Alternatives, CARR, CenterPoint, Stand together).

Most were substandard at best, failed to meet her needs, and only one, (Stand Together), was even partially successful.  The rest left her with enormous physical and mental scars, which will never heal.  And we never slept.

While DDD struggled to find still-another placement for Amika, she spent time at Fircrest.  We noticed how much better she did while living there.  The  secure campus, in house doctors, psychologist, and plentiful staff gave her the security she so longed-for.

During community placement, Amika was kidnapped, sexually assaulted, arrested, cost the city of Kent $100,000 in first-responder costs,(the agency called police constantly, even for minor problems), lived in dangerous places,  constantly eloped, food stolen by staff, etc. etc.

She is now a permanent resident of Fircrest.  She is secure, there is no police involvement, no dangerous elopements.  We sleep every night.

We do not know why you have such a skewed view of Fircrest and the other RHCs.  But we DO know, that for many people, and their families, they are life-saving.

We have watched KING5 literally all of our lives.  Always trusted for accurate news coverage.  After watching this series, with it's clear bias and inaccuracies, our trust is gone.  We will never again view KING5 reporting as accurate.

Please publish this email with other comments on this series.

Leone and Mac McMullen

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.   


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

Cheryl Felak, RN, BSN

Correcting Frame Attacks & Misrepresentations: Unions, Campus Communities, Segregation, Advocacy Agency/Vendor Conflicts of Interest

 April 6, 2016 Response by Cheryl Felak to Frame invitation for story based on Viewer Comments

Dear Susannah,

I have some additional comments and concerns regarding the issues that you have raised in your series “The Last of the Institutions.”

It appears that there is a consistent theme of attacking the RHCs for having union employees.  It needs to be pointed out that all the Individual Providers under contract with DDA  are members of SEIU 779.  Also care givers from First Choice and ResCare have also joined this union.  What is the motive for the attack on the union employees?  Is it because they have benefits?  If so, why is that so bad?

There is a national movement among families and people who live with intellectual disabilities to support campus communities and intentional communities.    I urge you to read “Who is my Neighbor”  and “Intentional Communities” for more information on residential options that many advocates are developing.  We need to have more options not less and closing the RHCs reduces many of the options and also reduces the availability of crisis supports.   See #ChoiceFirst and #increaseoptionsdecreasebarriersnow for more information on the nationwide movement to promote alternatives, campus living and intentional communities.

You and others speak of segregation without realizing that many families and individuals are segregated in their own homes and apartments.  Not having the ability to go out, to work, to meet with other friends because they are locked inside their homes with no support.  This is real segregation that needs to be highlighted.  There is no such segregation such as this occurring at the RHCs.

Catering to the vendors is not the same as advocating for people with intellectual and developmental disabilities.  There is a  major conflict of interest when some of these advocacy agencies gain much of their income from providing residential services.  Is this an advocacy agency which is really looking out for the people or for issues of its own gain hidden behind the cloak of advocacy?

Please feel free to publsh.

Cheryl Felak, RN, BSN

Wednesday, April 6, 2016


Thank you, Cheryl, for another lucid letter to Susannah Frame!
Dear Susannah,

I am writing today with information regarding supported living and the residential habilitation centers.  Your series “The Last of the Institutions” has sparked much interest in the programs and services for our citizens with intellectual and developmental disabilities.  It needs to be clarified that there are quality programs and services in both the community and habilitation center options – and there are problems in both scenarios too.  It is unfair to focus only on the good in one situation and the undesired in another situation and then compare them.

I know from research (Reviews, Evaluations, Cost Reports, and community discussions) that two of the agencies you highlighted (Provail and Alpha Supported Living) are two of the quality programs in our area.  In fact, my son utilizes services from both of these agencies and I believe he has the dream team working for him.  They hold high standards and have integrity.  They are both non-profit agencies.   Unfortunately, not all services and programs hold these high standards.

For instance SL Start, a supported living agency in our state (for profit) has had issues with safety in the homes of their supported agency clients.  One recent Certificate of Evaluation report cited faulty lighting fixtures hanging by duct tape with unprotected lightbulb as the source of light. Other issues were holes in walls and no working curtains on bedroom windows.   One young man I know has a 1:1 caregiver and enjoys going out but the caregiver only sits on the couch and refuses to take this young man out.  The mother has complained to her case manager and the response that she hears over and over is “we are doing the best we can.”

Ambitions, another for profit agency, has a home in Shoreline.  There have been multiple incidents at this home involving police.  A woman who needs 24 hour supervision often leaves and the caregivers are unable to go after her since they are alone and there are others to care for in the home.  This woman has been seen getting into strangers' vehicles and driving away, going barefoot on cold, wet days, has been reported as being lost only to be found at Northwest Hospital ER and recently had a foot infection.  She often calls 911 or an ambulance demanding that she be taken to the hospital that she wants to leave.  There were over 10 incidents at this home in 2014 and they became well known to the sheriff and Fire Department EMS.  

The officers are well acquainted with the residents of this home and have advised the house and/or management team the many false calls were a misuse of public emergency services and have encouraged them to develop a better plan.

You report that residents of the RHC are segregated, but in talking to the families of the residents this is not their impression of the campus communities.  I do not recall you speaking with any residents about their choices and why they love living at the RHC.  I know for a fact that the residents are not segregated – cut off from the community at large.  It is a fallacy that the residents are locked away against their wishes.  This myth is reinforced by comments of those who have not even set foot on the campus or worked with the residents and/or their families.   It is also perpetuated by the continued reference to the atrocities of the past as if those practices are still in play today.  We have a very different system in place now.

We need to understand that there are quality services and really poor services in both community and RHC settings.  It is critical to look at the quality services, figure out what they are doing right and cite the programs that are not meeting standards.  We need to pay the providers for the work they do and stop the quota on allowed beds.

We need to build services where the people live and where they want to be served.  We should not force them to move to another city/county because that is where the “bed” in the community is.  We hear of choice in the community but in reality the residents do not have a choice of housemates or homes and there is a limit of spaces allowed by the legislature.  There is a huge need for more services but the agencies are limited in what they can provide.  The rules look at vacancies – not necessarily where those vacancies are or if they are appropriate for resident compatibility.  Is this really choice?

Thank you,

Cheryl Felak, RN, BSN
Because We Care – Beyond Inclusion
Seattle, WA

Tuesday, April 5, 2016


Written by Cheryl Felak  in response to invitation by S. Frame to comment for a special "comment" story following discovery that King-5's comment section is not available for public viewing.

Dear Susannah,

Thank you for taking the time and effort to do an investigation of the Developmental Disabilities System in our state.   My hope is that there is come clarity that will become evident with a full disclosure of cost distribution, services and the choices of the families and people who live with intellectual disabilities.

As a parent of a young man with profound developmental disabilities and a mental health illness (dual diagnosis) and as a healthcare professional working with many in this population, I understand there is a huge variation in support needs of this population.   There are many reasons why a person/family may choose to live in a campus based community versus scattered homes in the community at large.

I also know from having had my son in both of these settings and from extensive research from the Certified Cost Reports required for each agency to submit annually to DDA, CMS reports, Certificate of Evaluation reports and academic research journals, that the costs analysis used in this series is incorrect.

It is a fact that those with higher support needs have a higher cost to their care than those who may not need as much support.  This is true regardless of the residential setting.  The difference in cost is deceptive due to the fact that only one budget (Developmental Disabilities Administration) is looked at.

When a person lives in a supported living home or other home in the community at large the cost of rent, food, medical, employment support and other supports come from other budgets.  Subsidized rent, food stamps, Apple Health Care, Behavioral Health Care, Vocational support, transportation subsidies are just an example of the different budgets that help support residents in the community.  These costs are not included in any of the cost comparisons of community homes to RHC costs.

Typically, the cost one sees attributed to care in the community is only that of the Direct Support Professional (DSP).  This cost of care for those with high support needs can be much more than the same DSP cost in the RHC given that lack of ability to share staff and resources in scattered homes throughout the community.

Another issue concerning the deception in cost reporting is the use of the “average” cost of community care in reporting the RHC costs more than community care.  What we do know is that for those with high support needs their care costs for direct support only can be as high as $750.00 day for an individual’s direct support care.  In the community each person’s cost of care is known since the agency negotiates with DDA for each contract.  The RHC does not have individual costs applied to each resident and so an average cost must be used.

That being said, we do need to be able to pay the DSPs a higher wage.  This is hard (although rewarding) work and takes a toll on one’s body.  There is a high turnover of staff mainly due to the lack of supports for the DSP – healthcare, short staffing and high use of overtime and a baseline pay that is not enough for one to live on without working 2 or 3 jobs. 
We do have a shortage of providers but the reasons are not due to the RHC – they are due to limits put on bed usage and pay by the legislature.

We cannot let neglect become the standard of care by underfunding these critical services.
Written/submitted to K-5, by Cheryl Felak, RN, Parent/Guardian

Monday, April 4, 2016


King5's comment page has been disabled. When I contacted Ms. Frame to request it's reinstatement, she cited technical problems and offered to do a special story just featuring reader comments.  Here are mine.  

Dear Susannah,
As you know, I am one of the advocates who supports keeping RHCs open.  One of that  "small, powerful group" that you blame for this travesty.

You raise the question about why the state would spend $97,000,000 in the next 10 years.  Would you question the costs of sustaining the   University of Washington, or any of the state's Universities which are also institutions?    I suspect you would simply accept that the costs were justifiable because of the service provided.  Most people would.  Or do you think we should hire private tutors for all the students?  Maybe the legislature could privatize the universities, establish a system of contractors to  run small, home-based learning centers?  Pay the professors less or even have one supervise many  poorly paid grad students.   Just  forget about sustaining those expensive campuses with all their old buildings.  This may sound silly to you, but to me, it is no sillier than suggesting closure of all the RHCs in favor of subsidized businesses that run residential services for people with IDD.

The most important thing is to recognize the  purpose and value of the institutions in question.  Especially in the case of the RHCs, we need to recognize that their residents are real people, many very fragile, emotionally and psychologically  as well as physically.   They can be harmed by callous determinations.  They are not pawns to be moved about  in order to satisfy somebody's ideological values or somebody else's economic opinions.  In fact, the law dis-allows both of those reasons.  Yet, together, those two  reasons  seem to form the basis for your series.

 If  DSHS would allow admission to RHCs of people who choose them, honor their  American Disabilities Act  Supreme Court Olmstead Decision-ensured right to choose them, the cost, per capita, would be reduced.  Your  series is, quite simply, in support of an industry of vendors.  But it isn't even free enterprise you are championing.  The state determines the rate, chooses the vendors  and pays them.  The competition that encourages excellence in free enterprise  is lacking.  The oversight that would ensure even decency and safety is also lacking.  Steve O'Ban's  bill that was signed into law today, that requires the state to check on some people is a start; but serious amendments will be needed before the  level of protective oversight that is needed ever becomes law.

Susannah:  You say in your ending comments that it is hard for people whose family members  have been in RHCs  for years to consider change.  Your statement  discounts most of our  families,  whose loved ones  are in RHCs, today, because they  were already failed by the community-at large.  Most RHC families have sacrificed and struggled valiantly to keep our loved ones at home.  When that failed, we tried community-at-large venues, often, several.  When  those failures finally forced us to  face the fact that we had to use the services of an RHC, we suffered terrible guilt and remorse.  But then, we discovered that our loved ones were getting what they needed, FINALLY. 

Once they see their loved ones' gains in RHC care, many try to exercise their loved one's Olmstead-ensured right to choose an RHC over a community-at-large venue, but few have the financial resources to bring the federal case to court.  Knowing that, DSHS continues to press it's policy of "diverting"  them to community-at-large venues, requiring  vulnerable people with idd to be failed several times by the community-at-large before allowing them into an RHC.  Why don't those people's experience count for you?  Why do you discount it?

 The community-at-large successes that  you showcased were exemplary.  Somehow, you failed either to find or to showcase the ones that sit idle, day after dreary day,  in their lonely, isolated, community-at-large homes.

Susannah, over and over again, in this series, you have taken potshots at the unions.  The unions are responsible for high continuity of care due to  low caregiver turnover in the RHCs.     As a family guardian of a non-verbal, totally dependent person, I am immensely grateful for that.  In part, my sister thrives because of the relationships she has formed through years of knowing and having her every nuance known by the same caregivers.  Here is something that happens as a result of decent-enough pay:  those long term workers are not just in it for the money; I know from years of experience with them that their ability to stay on the job that is afforded by  unionization also affords them the ability to work with  heart and dedication for each, unique person in their care. 

Of course, there are families who can afford to subsidize higher caregiver wages and benefit packages for their loved-ones living in the community-at-large, but most cannot.  So their loved ones must suffer the constant turnover of workers, stranger after stranger after stranger  assigned to take care of them before moving on to a higher paying job, maybe one with benefits. For the person with idd, the situation is fraught with risk.

Thank you, Susannah,  for having offered to create a story to feature our comments.  I hope you have many such as mine  to use together. I look forward to seeing the story.  If you do it as a video, if you could please pay us the courtesy  of avoiding your practice of using  the least flattering visuals you can create or find of the facilities,  I and other families and guardians  would appreciate it.



Saskia Davis, Family Guardian
ddexchanges @gmail.com
206 364 7762

Thursday, March 24, 2016


For a few days, the comment section of the King-5 series entitled, "The Last of the Institutions," has been down.  It appears to be censorship, but  when one  reader complained, she was told it is due to technical difficulties.  If that is true, we hope they will demonstrate at least enough integrity to fix it and bring all the comments back.

At the author's request, I am posting this letter, which she  sent, today and tried to post on the missing comment section.  Please chime-in in the "comment" section below this post. Click on "Comment" to open a dialogue box.

To: Russ Walker, Executive Producer / KING 5 Investigators  333 Dexter Ave N  Seattle, WA 98109                                  

Dear Mr. Walker:

I am stunned by the uneducated, biased reporting of one of your investigators, Ms. Susannah Frame. She is actually telling lies about the quality of care our residents receive at our Residential Habilitation Centers (RHCs). Her LAST OF THE INSITUTIONS series is beyond insulting to our hardworking, experienced, professional and support staff. Her dialog is preposterous. I am a parent of a son who has lived at Rainier School since he was 14 years old. He is now age 67.  Ms. Frame is not anywhere near telling an accurate story of the wonderful, specialized care he as received there for so many years.

Why isn’t Ms. Frame participating in any of the many ongoing RHC staff training classes and spending time working on the houses along side our staff and residents in order to get accurate first hand information?  ARC’s president, Stacy Gillet’s (and Ms Frame’s choice of others to interview) comments are equally as grossly distorted and untrue. It is unbelievable that Ms. Frame accepts this one sided account of RHC care.

Our RHC’s are miracle facilities and anyone who does not know that, has not spent much time there. My son is a prime example! He was never expected to have lived for so long and had such a productive, meaningful life. Your station would have done a great disservice to our most severely disabled with broadcasting even one Susannah Frame report let alone to send out an endless stream!  Somebody needs to question the motivation of KING TV’s owners and directors and stop this damaging attack on our severely disabled citizens and their RHC caretakers.

Please take the time to read the true accounts of Residential Habilitation Centers in our supportive dialog.


Jeanie Barrett, member ACTION DD, a non-profit organization that supports any service that is of benefit to our developmentally disabled citizens. We advocate for a full continuum of care that includes RHCs.

Mother of son who has lived at Rainier School for over 53 years.

Former special education teacher for multi-handicapped, medically fragile, severely-profoundly developmentally/intellectually disabled students

Tuesday, March 22, 2016


God Bless Maralyn Chase and Frank Chopp and all the other legislators who understand the need for and continue to vote for RHC survival. My non-verbal, sister, intellectual age-18 months, with severe spastic quadraplegia, major motor seizures and bi-polar disease thrives because her RHC home is still open. PT, OT, ST, nursing, medical, dental, dietary and well-managed, specially trained  attendants cooperate to provide care according to her individual, interdisciplinary team plan.  I am part of the team. Without the centralized services available on her RHC campus, her needs could not be met as she needs them to be. They are too intensive and complex.

Don't trust the cost comparisons cited by Susannah Frame. She is perpetuating myth, not quoting "science". When comparisons are made between RHCs and community-at-large costs, they are apples-to-oranges, inaccurate because: 1. No way to aggregate all the piece-meal therapies and services in the community-at-large has been devised. 2. DSHS only tracks the costs that accrue to it's budget. 3. Costs are included on the RHC side of the ledger that don't apply to the residents being compared, and in some cases, even to the RHCs: eg: utility costs for unrelated, campus property tenants who pay no rent but benefit from free utilities from the facility. 4. People who are promised services in the community-at-large if they agree to be moved from an RHC don't always get the services they had or were promised; this, of course, lowers their costs.

Before her RHC admission, my sister was terribly abused in her community-at-large home. Oversight that is  designed to PREVENT abuse is still needed in the community-at-large. Federal standards and audits to enforce them make the RHCs the safer option for people as vulnerable as my sister is. 
RHCs aren't appropriate for everyone. For some, they definitely are too restrictive. But for those who need them, their full service, therapeutic, residential communities meet their needs in ways that are impossible in the widespread, piece-meal services available in homes provided by businesses which, also, are tax supported,

Sunday, March 20, 2016


For clarity, I have paraphrased an urgent plea from VOR.  See my message below it.

March 16, 2016
Dear Friends and VOR Members,

We urge you to act immediately.

Pursuing an  agenda to  limit residential service for people with Intellectual Developmental Disabilities  (IDD) to service in community-at-large homes  which are provided by subsidized businesses, Protection and Advocacy Agencies (P and A) and the U.S. Department of Justice (DOJ) file mass actions with the purpose of closing Intermediate Care and Nursing  Facilities* for People with Intellectual Developmental  Disabilities (ICFs/NFs-IDD).

It is unjust to require parties who oppose an action to be party to it.  However, typically, the P and A agencies and DOJ  file their class  actions without consultation with the parents and/or  guardians of the residents who would be displaced from their homes.  Consistently, the parents and  guardians   have opposed such actions. 

The Americans with Disabilities Act (ADA) Supreme Court Olmstead decision compels the government to respect each person's right of choice between institutional and community-at-large residential placements.

The following is the not paraphrased.  
Please email your representative in the U.S. House of Representatives immediately and request that he or she contact the House Appropriations Committee by March 23, 2016 and ask the Committee to include language in two appropriations bills which will protect the rights of individuals with I/DD who require and choose an ICF/IID level of care. 
Taking action is easy.  Please click on the link below to be taken to a ready-to-send email to your U.S. House Representative.  You can edit it, if you wish, before sending.
Thank you for your attention to this important matter.
Please feel free to forward this alert to others who would like to help.
Hugo Dwyer

Here  is the message I am using:   Feel free to appropriate and/or modify it.

Thank you for your service.

By March 23, 2016,  please ask the House Appropriations Committee to include  in two appropriations bills  language which will  protect the rights  of choice by people with intellectual developmental disabilities  who need  and choose Intermediate Care or Nursing Facility care.    Please ask that the language  prohibit class action  lawsuits against ICF's/NFs/IDD  unless they are filed following consultation with  and consent for  inclusion in the lawsuit  by each of  the parents and guardians of the facilities' residents.

Pursuing an  agenda to  limit residential service for people with Intellectual Developmental Disabilities to service in community-at-large homes which are  provided by subsidized businesses, Protection and Advocacy Agencies (P and A) and the U.S. Department of Justice (DOJ) file mass actions with the purpose of closing Intermediate Care and Nursing  Facilities for People with  Intellectual Developmental  Disabilities (ICFs/NFs-IDD).

It is important to understand that ICFs/NFs-IDD are not the isolating  institutions   of  scores of years ago.  On the contrary, while they  vary in style, they are modern, full service, therapeutic communities.  Often, they are  campus-based.  Like all neighborhoods,  they  function interactively with their larger,  surrounding communities.   Also, due to higher federal standards and auditing, they typically are the safer option for especially vulnerable persons.

It is unjust to require parties who oppose an action to be party to it.  However, typically, the P and A agencies and DOJ  file their class  actions without consultation with the parents and/or  guardians of the residents who would be displaced from their homes.  Consistently, the parents and  guardians   have opposed such actions.

The Americans with Disabilities Act (ADA) Supreme Court Olmstead decision compels the government to respect each person's right of choice between institutional and community-at-large residential placements.

Repeating my request:
By March 23, 2016,  please ask the House Appropriations Committee to include  in two appropriations bills  language which will  protect the rights of  choice by people with intellectual developmental disabilities  who need  and choose Intermediate Care or Nursing Facility care for people with IDD.   Please ask that the language  prohibit class action lawsuits unless they are filed following consultation with  and consent for  inclusion in the lawsuit  by each of  the parents and guardians of the facilities' residents.

Saskia Davis, RN, Family Guardian

*Please note that I have changed all references to ICFs to include NFs (nursing facilities).  In WA and some other states, state operated facilities may be solely ICF or NF or may be a combination of them.  The people in both settings need and deserve the same protections.  (20 or more years ago, ICFs were the only choice, and so nationally, the language was used in place of "institution".  Now, we need to remember not to exclude the residents whose conditions require more intensive nursing care and so have been assigned to those facilities rather than ICFs.)


Saturday, March 19, 2016


See our video about RHCs.  It's just 5 minutes.  Worthwhile.  Let me know what you think.
Here are 2 links.  The first is one I saved of the original version.  The second is the same except we added a "thank you" to professional staff in order to cover help protect them from being accused of using government time to share their expert views.



RESUMING DDEXCHANGE: What's new? What's Not?

I'm back.  Almost 5 years ago, I  put DD Exchange on hold  because  my plate was too full.   Finally, I've realized  that, at the very least, even if I  don't always  have time to stay current, whenever I have time,  I can  use it as a place to chronicle what I am seeing.  

What do You think?   Probably,  most  everyone has forgotten this blog, but since you are  reading this,  please speak up in the "comment" section.  I would love to hear from You!

Rereading old posts, I find many that could be mistaken for current.  There have been surprisingly few changes. 

My sister's home:  Fircrest School (RHC) is still a great home for her and others.   I will post  our video, entitled "Protecting Our Most Vulnerable," separately.   It's about RHCs in Washington rather than just Fircrest, but Fircrest is well  represented.  New programs, such as Art, Gardening, and special communications classes   have been added.  iPads are enhancing the communications skills  and recreational pleasure of many.   Thanks to some inconvenient, but needed observations/citations by Federal auditors, RHC  residents, statewide, will be engaging in activity programs that more closely fit their needs and interests.  (RHCs are state-run, campus-based, full service,  therapeutic communities known in WA as "residential habilitation centers" and in other states as "residential centers" or "ICFs." In WA, ICF's are only one facet of RHCS.  The other is NFs, a specialized,  nursing home program.)

Sad to say, Dr. Asha Singh, Fircrest's excellent Superintendent and Medical Director of more than 20 years has retired. A nationwide search for her replacements (in each position)  is ongoing.  The interim Superintendent, Jeff Fleshner, has been terrific, but he will not be staying on. 

 The RHC closure push in WA:   Pressure continues in WA to close state-run RHCS.     Currently, Yakima Valley School is scheduled to close by forced attrition unless a current bill, which takes it's closure out of statute,  passes.   We are holding our collective breath during this overtime legislative session.

Propaganda:  After 26 years as an advocate, I thought I had become too jaded to be shocked or completely disillusioned, but  King 5,  a  Seattle TV station that was a staple in my household when I was growing up,  has proven me wrong!  They have run several video editorials (some call them "infomercials")  that they bill as "special reports." They are  designed to bias the  audience against RHCs.  Toward that end, they have used selectively misleading video footage as well as doctored photos* + not-so-clever, carefully deceptive verbal reporting  that only  just barely squeaks by the "factual" test.  If you have the stomach for them, please don't read or watch any of the editorials without going to their comment section to correct their lies.  For some reason, they require that you be signed onto facebook in order to register a comment. The series is entitled "The Last Of The Institutions" King5.com is the URL.

*Doctored photo example: I've been trying to upload the combo, but my resources
aren't up to the job.  Here is the photo that was doctored.  Now for your imagination as I describe the visual lie that was created:   King 5 CUT AWAY ALL THE COLORFUL FUN AND NATURAL BEAUTY, THEN,  INSERTED THE REMAINING RESIDENT AGAINST THE STARK CORNER OF A 3 STORY BRICK BUILDING.   Apparent intention: create a cold picture of an institution!    Frame is the name of the reporter.   I call the series, "The Frame Deceptions."  Shame on Frame.

Missing: Protective oversight for WA's vendor-owned-home residents with ID/DD:  Community-at-large residents with intellectual developmental disabilities (IDD) or severe physical disabilities (DD) in WA and many other places,  nationwide,  are still at high risk for abuse neglect.  There is still no protective oversight that would prevent their  abuse and neglect  in homes run by businesses contracted by DSHS.

In large part, those of us who work to keep the RHCs open do so because, historically, regular and  surprise  CMS audits have raised the standards in those facilities and  have helped to protect their residents from harm.  This level of oversight is  sorely lacking in Washington's  subsidized  system of vendor-operated, community-at-large homes.  I am told that this deficit is also a problem in many other states.

National-Including WA: The same groups are still actively pushing to close the RHCs, nationwide.  Even if we're paranoid (paraphrasing an old saw), it doesn't mean they aren't colluding to close the RHCs:   RHC closure zeolots including ARC and   the vendors it represents,  had  managed to hoodwink the Justice Department  into misinterpreting the intent of the Supreme Court  Olmstead decision. Olmstead explicitly does not require institutional closures. What it does require is CHOICE between residential care in an institution and; a community-at-large home.   According to reports, the DOJ has visited several governor's around the country,  putting them  on notice that if they don't play ball and initiate institutional closures, their states will be audited.  Rather than face the harassment head on, some weak governors have capitulated. Other governors, who have not capitulated have had to face the combined pressure of the DOJ and the vendor supported groups as they have fought to keep their facilities open.  Many such battles are raging, nationwide.  For ongoing news, subscribe at VOR.net. 

The DOJ visited Lakeland Village School (RHC near Spokane WA), after some well-justified changes had satisfied a CMS audit.  LVS survived the DOJ.

 VOR (Formerly, the "Voice of the Retarded") (VOR is our nationwide advocacy group for people with intellectual developmental disabilities (IDD) Advocacy includes people who live in in community-at-large homes as well as those who live in RHCs.  )

Tammy Hopp,  ultra-dedicated VOR  Director and Master Juggler, par excellence,   has  also moved on.  Tammie, who wore numerous, important hats at VOR, was a challenge to replace.  With the new Director, Hugo Dwyer, (whom I have found to be very responsive),   reorganization  is happening. Probably,  the result will be that the  organization will be even stronger, with several people and groups taking over the many responsibilities previously carried by Tammie. 

 Missing Costs Mislead: Cost comparisons between campus-residential, full service, therapeutic communities and community-at-large facilities continue to be based on incomplete community-at-large program data.  Such inaccuracies  lend illusory weight to assertions that RHCs are too expensive.

Please see the next post for our video entitled: "PROTECTING OUR MOST VULNERABLE".