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.
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 John, Sonja & Mark Mahaney
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
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
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
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