RHC PARENT PROTESTS KING-5 - FRAME SERIES DECEPTIONS

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.

Sincerely,

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

ANSWERING BIASED READER COMMENT IN NOW DISABLED KING 5 COMMENT SECTION:

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,

URGENT: CONTACT YOUR US HOUSE REPS NOW

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.
Gratefully,
Hugo Dwyer


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

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.

Background:
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.

Sincerely,
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.)


http://salsa4.salsalabs.com/o/50829/p/dia/action3/common/public/?action_KEY=17918

"PROTECTING OUR MOST VULNERABLE" VIDEO

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.

http9qnfKk0vuGY&feature=youtu.bes://www.youtube.com/watch?v=

https://www.youtube.com/watch?v=qZh8SQoOs18&feature=share

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".