"THE TRUE STORY OF RHCS"

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.

Sincerely,

Jeanie Barrett, Mother of son living at Rainier School RHC



                        HISTORICAL SUMMARY - RESIDENTIAL HABILITATION CENTERS (RHCs)

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.

FAMILIES & GUARDIANS DEFEND RHCS WITH PASSION AND FACT

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 "@".

http://www.king5.com/news/local/families-bash-king-5-for-series-last-of-the-institutions/128742643?c=n

INCHING FORWARD: K-5, FRAME REGARDING VIEWER COMMENTS ARTICLE

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!

OLMSTEAD SUPREME COURT DECISION

THE CHOICE TO LIVE IN AN RHC OR OUT

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. 

14 GREAT LETTERS TO FRAME & COUNTING

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.    

KING5 "FALSE" INFO "DISTURBING, UPSETTING, OFFENSIVE, HURTFUL"

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

AS AUDIT STANDARDS INCREASE, RHC SERVICES IMPROVE

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.

Sincerely,
Saskia Davis, RN, Family Guardian