Families Bash King 5 for series

by Because We Care - Beyond Inclusion
King 5 News has aired the series “The Last of the Institutions” by Investigative Reporter, Susannah Frame.  Over the past several months that this series has aired, there have been many issues which needed more information to be transparent in an “investigation”.  Many people attempted to write comments online but the comments were deleted more than once and unavailable many other times.  These limitations prohibited community citizens to voice concerns regarding this biased reporting.

 

Susannah Frame was aware of these concerns and wrote to one advocate her solution to the problems.  Ms. Frame wrote “Here’s an idea we’ve come up with for you and whomever you’d like to share this with. Email me your comments to me and we will create a “viewer comments” article. This way, we’re not relying on the technical abilities of the new system, but we’ll create a new “story” that will feature just your comment.”

 

King 5 did publish the letters but there were difficult to find and each letter had it’s own link making it difficult to read all of the letters in one view.  I have re-posted the letters from the King 5 News Website below for people to read, understand and review.

There is a wealth of information here that was missed in the series – but not because Ms. Frame was not aware – there was a deliberate exclusion of this information.

Comments from Mary Beth Thompson

KING 12:53 PM. PDT April 19, 2016

April 4, 2016

I just read your resume. You are to be commended for all you have done in your career looking under the rocks. I am the mother of a fifty year old autistic daughter whom I love beyond all reason. She does not talk, nor is she toilet trained. On the activities of daily living chart she is estimated at a 1.3. I cared for her until she was 9 when the Francis Haddon Morgan institution accepted her. They saved her life basically by teaching her how to use a spoon although this took three years and countless man hours. Due to the age limit there she has lived at Lakeland Village for the past 35 years. I feel immensely blessed to have such a place. I take my daughter home for overnight almost every two weeks. I see how residents are treated by amazing staff. The residents are not being held prisoner due to lack of funding. It is more like the parents and guardians are terrified that articles like yours will spoil everything that we hold very precious. My daughter is so vulnerable that if her bedroom is freezing she cannot pull the covers over herself. I could never have peace of mind having her in a group home. She could never tell me of poor treatment because she doesn’t talk. Lakeland has many more eyes to watch over her and they have a long track record of guarding her and I think even loving her. As to the advantages of “community life” I sometimes wonder if Anne knows me! She is severely autistic after all. You are obviously a successful reporter so I would ask you to shine a wider beam under this rock. Thank you for reading this long missive.

Mary Beth Thompson

Copyright 2016 KING

 

Comments by Cheryl Felak

KING 12:55 PM. PDT April 19, 2016
April 4, 2015

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.

Cheryl

Cheryl Felak, RN, BSN

Because We Care – Beyond Inclusion

Seattle, WA

http://www.becausewecare1.com

Comments by Saskia Davis

KING 12:54 PM. PDT April 19, 2016

April 4, 2016

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 of find of the facilities, I and other families and guardians would appreciate it.

Sincerely,

Saskia

 

Comments by Cheryl Felak

KING 12:55 PM. PDT April 19, 2016

April 5, 2016

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 habitation 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

Comments by Cheryl Felak

KING 12:55 PM. PDT April 19, 2016

April 6, 2016

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 publish.

Cheryl

 

Comments by Becky Scholl

KING 12:52 PM. PDT April 19, 2016

April 6, 2016

I viewed all but one of the series of “reports” on residential settings, compared with family or group living.  While only best information was shared about family, group or supported independent living for the disabled, I believe Frame, for whatever reason, intentionally attempted an assassination of residential living.  My belief is that state residential living is the perfect place for my daughter who is, at 46 years old, utterly dependent as a nine month old child.  She is profoundly delayed, has cerebral palsy to the extent that she can only use her right arm, has massive seizures, has medication and feeding and dietary needs.  While I support lesser delayed persons having the opportunity for the multitude of living options that are provided in Washington State, I also hold as very precious the residential life that safeguards my daughter.  Using lifts, she has access to her own recliner, her own wheelchair, and frequent pool treatments for her tight, spastic muscles. She has daily excursions outside in her wheel chair, frequent trips to the main building for more social life, as well as about 20 trips each year to music events and other events in the community, such as the Central Washington State Fair.

She has a long-term, trained staff that knows what she is trying to indicate, since she does not have speech to show her needs.  She is safe, happy, laughing, and interested in the switches that she can manipulate on and off (cause and effect).

In showing the good things about more independent options for the developmentally delayed, I found Frame’s use of black and white photos from the 20s and 30s, plus Frame’s beginning each session standing by a cyclone fence next to a big green garbage container offensive and insulting.  She is not a news reporter; she is a hatchet woman.

Copyright 2016 KING

Comments by Elizabeth Cantrell

KING 12:59 PM. PDT April 19, 2016

April 6, 2016

Susannah,

The agenda for your series, “The Last of the Institutions”, was predetermined before the series began.  Your meeting with parents and guardians of Fircrest residents was a kind gesture but as you said to me as I was leaving,”I hope you’re not disappointed in the outcome”.

Fircrest is an inclusive community where my cousin has been well cared for and safe since 1983.  This was not true when she lived in a group home in the community.

I am very disappointed in your reporting. The reporting was biased, not factual and  anti community centers from the very beginning.

Fortunately, people I know have asked me about the series and I have been able to give the true picture of the community centers which are an important part of the continuum of care for our disabled  population.

Sincerely,

Elizabeth S. Cantrell

Copyright 2016 KING

Comments by Judi Gibbs

KING 12:49 PM. PDT April 19, 2016

April 6, 2016

Susannah,

I understand that you are accepting responses to your series, “Last of the Institutions.” This is my response.

My brother, Danny Schneller, lived at Lakeland Village outside of Spokane. He had Down Syndrome and some other profound disabilities. The staff at Lakeland gave him amazing care!

The biggest challenge for the Lakeland staff was Danny’s two-year terminal illness. The final stages were particularly tough! I was guardian at that point, and I live in Seattle. I was totally comfortable having Danny 300 miles away because I knew the Lakeland staff members were highly competent and cared deeply about him.

If Danny had been anywhere other than Lakeland, or another RHC, I would not have been comfortable with the distance during his final illness, but I was comfortable because I was blessed to have him at Lakeland Village.

Please publish my comments.

~Judi Gibbs

Copyright 2016 KING

Comments by Paul Strand

KING 12:51 PM. PDT April 19, 2016

April 6, 2016

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

ActionDD

Advocates for people with

developmental disabilities

Copyright 2016 KING

 

Comments by Jan Cosser

KING 12:50 PM. PDT April 19, 2016

April 6, 2016

Dear Ms. Frame,

Your Series on “Last of the Institutions” featured people who desired to live in the community who were able to make decisions for themselves. I applaud them for their ability to do so. I was legal guardian for my nonverbal, profoundly disabled sister from 1980 until she passed away one year ago. She lived at Rainier School and received 24 hour care by dedicated staff who treated her with respect and love. I visited her often and attended many meetings over the years to assure she received the good care that she needed and deserved. She was not “isolated” from the community as she was able to go with staff on shopping trips, to movies or out to dinner. She attended events such as the Puyallup fair also. Every year at her annual “Individual Habillitation Plan” meeting, I was given the choice to look for other living arrangements, if I felt she would be better served in another setting. Rainier School was her home, she was loved by staff and she loved familiar staff who were with her, many for years. When she was hospitalized and Dr.’s put me in touch with hospice workers, I was given the choice to put her in a hospice setting other than Rainier. However, Rainier was able to care for her until the end. I chose that for her as it was familiar and she would be cared for by the onsite doctors and nurses. My point in all this is that not all people have the same wants and needs. This is no different than you or I. We need to have choices. Residential Habilitation centers are a good choice for those who need and choose such an all inclusive care center.

Thank you for your time.

Jan Cosser

Copyright 2016 KING

Comments by John, Sonja & Mark Mahaney

 

KING 12:51 PM.PDT April 19, 2016

 
 

April 6, 2016

Thank you for reading and receiving this,
I have attached a edited version of testimony I gave at a RHC/Respite hearing this year.
Although my 32 year old son still lives at home, he uses the Respite program offered by the Yakima Valley School.
The Yakima Valley School provides complete care for our sons and daughters who are medically fragile with high level acuity. I understand cost is the exploited factor, although peace of mind knowing adequately trained, competent staff and a safe environment is priceless.  Cost is nearly the same for a child like mine in the community or a state facility.

Thanks for your time,

John, Sonja & Mark Mahaney

 

Attached document:

Respected Legislator, I ask that you support E2SSB 5243 and E2SSB 6564.

             I am a proud parent of 2 son, Devon 27 who served our nation in Iraq for 6 years as an Army Scout. Devon’s older brother Mark, who’s 32 years old and reason for my attendance today.

             Mark was born at 28 weeks gestation resulting in profound complications leading to abilities less than the norm. Mark has multiple health complications Cerebral Palsy, Seizure Disorder, Spastic Quadriplegia, High Tone, Non Verbal, Tub Feeding, Liquid Medications 5 different times throughout the day. Mark is like a 2-3 year old with a full set of teeth and a very powerful jaw.

 E2SSB 5243

             For the last 8+ years our sons and daughters have been victims of fewer services, cut after cut.

This places parents in higher demand of respite services. I receive phone calls daily from parents all over the state complaining about respite services. The Developmental Disabilities Administration is telling parents Yakima Valley School is no longer accepting respite clients, and to seek community based respite. When I asked where to look I was told “There are none yet, but there being developed.”

      When my son Mark needs hospitalization his level of care is so extreme he’s placed in the Pediatrics Unit. His care acuity requires very close monitoring with a skilled staff. This is the level of safe secure care Yakima Valley School offers with RN’s on site 24 hours a day.

             I agree Yakima Valley School is not appropriate for all clients and parents needing respite. For me, and countless others we depend on those practiced in higher acuity of care in a safe secure competent environment. Please support the needs of our sons and daughters.

            I plead with the members of this committee not to dismantle a proven system hundreds of parents need and is so essential keeping our sons and daughters living at home. Again, the RHC setting  may not be the appropriate setting for all, although it does serve a vital service for our sons and daughters as well as giving parents much deserved (break) respite.

              Continue Respite Services at Yakima Valley School, Support E2SSB 5243

   We Thank You For Your Time,

 John and Mark Mahaney

Copyright 2016 KING

 Comments by Terri Anderson  

KING 12:53 PM. PDT April 19, 2016

April 6, 2016

Hi, Susannah! I’ve watched & read each of your “Last of the Institutions” segments. More frequently than not, your subjects are higher functioning, with good communication skills and community homes, not apartments. Not until the last segment did it become obvious that the individuals share their homes. In some cases, because of behavioral issues mentioned, I felt the individuals had one-person homes. I believe the general public would have made the same assumption. I realize there are privacy issues. However, it would give a more accurate picture if sharing their homes was mentioned.

What about the other necessities of life & health needed by our challenged communities? How difficult is it for these individuals to obtain basic medical, dental, psychiatric/psychological/therapeutic services? I know some vendors contract with medical clinics for basic services, but what about the rest? Is the emergency room of local hospitals the answer? Job training leading to positions, health/day programs, recreation and transportation are also parts of the big picture.

I appreciated the segment on low wages. Caregivers should be paid their worth. But with that value comes the need for extensive & continuing training. Please talk about the training that is needed to properly care for many of our DD loved ones.

The people you have chosen are fine examples of what can be done and how it looks when things “go right”. Please remember there are individuals and families that have tried to work through the system and have failed to find the right mix for a community placement. “One size does not fit all” is an appropriate description of the community.

Your community slant is very obvious. I had hoped your approach would have been more balanced.

Terri Anderson

Comments by Elizabeth Jackson

KING 12:48 PM. PDT April 19, 2016

April 6, 2016

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

Copyright 2016 KING

Comment by Sola Raylor

KING 1:00 PM. PDT April 19, 2016

April 6, 2016

Susannah,

Regarding RHCs and community settings, it does not have to be an “either/or” debate.  Washington should be proud of it’s continuum of care for intellectually disabled citizens.  Nobody is being made to stay at RHCs against their will.  Freedom of choice has been established in policy.

Sincerely,

Sola Raynor

Copyright 2016 KING

 

Comments by Cheryl Felak

KING 12:55 PM. PDT April 19, 2016

April 10, 2016

“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.”

Dear Susannah,

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.

Copyright 2016 KING

Comments by Leone and Mac McMullen

KING 12:56 PM. PDT April 19, 2016

April 10, 2016

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 viewKING5 reporting as accurate.

Please publish this email with other comments on this series.

Leone and Mac McMullen

Copyright 2016 KING

 

Comment by  Duwane Huffaker

April 11, 2016

 

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 evironment 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.

 

Thank you,

Duwane Huffaker

Vice president LVA

Copyright 2016 KING

Comments by Jeanie Barrett

KING 12:55 PM. PDT April 19, 2016

April 11, 2016

Dear Ms. Frame,

I recently sent the following messages to your program director Russ Walker. I wish to have it published in your upcoming comments story. I am more than disappointed in your Last of the Institutions reporting. The information you have been given is just wrong as to what our RHCs provide and how our residents are cared for. Thank you for at least publishing our Support RHC position comments. King TV had made big mistake. They have been so disrespectful of our caring, dedicated staff. They work very hard, long  hours sometimes.

Sincerely,

Jeanie Barrett

 

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 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.  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 themiraculouswork 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 negative reports.

Sincerely,

Jeanie Barrett                                                                                                                                                                          Mother of son living at Rainier School RHC

 

HISTORICAL SUMMARY –  RESIDENTIAL HABILITATION CENTERS (RHCs)

by Jeanie Barrett

Mother of son at Rainier School

I am one of those who has 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.

Copyright 2016 KING

 

Comments by Saskia Davis

KING 12:54 PM. PDT April 19, 2016

April 11, 2016

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 am looking forward to your story featuring our comments.

Sincerely,

Saskia Davis, RN, Family Guardian

Copyright 2016 KING

 

 

 

 

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

Gravatar
WordPress.com Logo

You are commenting using your WordPress.com account. ( Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. ( Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. ( Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. ( Log Out /  Change )

Cancel

Connecting to %s