How to create a crisis – deny services

Way back in 2011 and 2012 when Washington State was “researching” issues related to caring for our DD population, there was a DD Task Force which met several times.  The goal was to discuss the future of DD Care in our state with emphasis on the consolidation and closure of the close the Intermediate Care Centers.

Several of the predictions I had and tried to communicate to other DD Advocates and legislators have come to fruition.  Please listen to the families who are the real experts and survivors.  Advocacy Agencies such as The Arc, Disability Rights Washington and other similar agencies which receive public funds to provide advocacy must abide by their  policies – policies which may not be in the best interest of those actually involved.

  •  SL Start and client neglect/abuse – I reported issues in August 2012 to the legislature.  Senator Adam Kline only provided ridicule and sarcasm in his response to me –

“But I suspect this won’t happen.  I could be wrong, but I suspect that this story’s real value to the RHC advocates is in its expected political effect.  It portrays the RHC families—even the residents—as pawns in a game in which the malevolent community advocates are the operators.  SL Start is the villain in this instance, maybe the Arc the next time, maybe the Governor.  And you are “silenced” by these conspirators.  The victims are rendered mute, while only the conspirators may speak.  The conspirators “manipulate some of our community members.”   Oh, please!”

Obviously, this Senator believes this situation is fabricated to make an issue.  I wish it was but it’s not. This Senator goes on to berate me for being an advocate for safe and appropriate care and categorizes me into the “pro RHC” side.  When will he and others realize that it’s not about sides – it’s about safe and appropriate care for each individual.

April 2018 Headline – Apparently I had some real information that needed some attention.  If only people had taken the time to listen, trauma could have been alleviated.

Washington Shuts Down Care Provider For Disabled Adults, Now Families Face Tough Decisions

Below is an excerpt from the blog post dated September 8, 2012.  I address the issue that DDA did not even consider the issue of DD clients using the hospital and ER as crisis care.

That comes from a different budget so it’s not a factor to DDA.  Well it should be because it greatly affects the PEOPLE involved in addition to adding overall cost to our state’s budget.

While the concept of the crisis team is good, why not use the facilities and services we already have in place to run this program out of? We have the space and expertise to do this already and it seems ridiculous to start a whole new program for something that we have which already works very well.

I believe this was also part of Julianne’s testimony and she is 100% correct in her assessments of the situation.

As a parent who has survived crisis after crisis, I can also tell you that you should look to the hospital emergency room data on how many people are taken there for crisis. I believe you will find a lot more information regarding where folks with developmental disabilities go when they have a crisis. I also know this is the case from working with other families and hearing their stories. Talk to the ER nurses at Seattle Children’s and ask them how many families bring their kids with DD (particularly autism) there for crisis intervention. Talk to the Inpatient Psychiatric Unit doctors, nurses, and staff and Seattle Children’s. I believe you will find staggering numbers. You will see a much different picture than one you may hear from DDD. DDD is not aware of many of these crisis admissions to the hospitals because they are not notified.

What about connecting the crisis care team with the local hospitals and emergency medical response systems? What about connecting with the Crisis Line? I know that not only in our family’s case but in many, many others, these are the systems which we accessed in times of crisis. These are the places in which we will be able to realize the extent of the crisis situation with people with DD.

Please read the report the DD Ombuds   published and consider the tasks outlined to address this critical problem.

Provide appropriate funding to community residential providers and support the ICF to provide appropriate care for DD clients in crisis.

King County DD Wrap up for The Arc of King County Legislative Forum 2014

Letter to King County Legislators – December, 2014  (letter sent as a wrap up after watching the forum on TVW)

Thank you very much for attending the King County Legislative Forum on November 24, 2014. I was unable to attend and present some information regarding critical needs and access to services for many in our communities but do appreciate the opportunity to share the information with you at this time.

With Governor Inslee’s budget proposal it is clear that we will again be looking at more cuts to services for people with Intellectual/developmental disabilities. It is critical to have accurate information regarding community care, respite, crisis care and cost of care in order to make informed decisions.

What is most concerning to me is that facts are not being shared regarding access to and cost of care – particularly for the much needed respite and crisis care. I have gathered the information below in hopes of sharing some solutions to the problem. You heard some heart wrenching stories, particularly from Janice Lawrence and Laura Jorgenson regarding lack of respite and crisis care. My family, too, has experienced these issues – my son faced jail as the only option left for “care” as a 14 year old with profound intellectual and developmental disabilities. Multiple and prolonged hospitalizations were our crisis care until the denial of services was able to be appealed and he was admitted and stabilized at a Residential Habilitation Center (RHC). I understand the agony of these families in trying to secure appropriate care for their children and I work hard to advocate for this care.

You may recall in 2011 our state passed 2SSB 5459. There was quite a bit of controversy regarding this bill for several reasons – mainly closing of the Frances Haddon Morgan Center (FHMC) based on “cost savings” which never materialized and a state law which goes directly against Centers for Medicaid and Medicare Services admission of eligible clients into the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) or the Residential Habilitation Centers (RHCs). Washington State passed a law prohibiting those under 21 from admission to the RHC, regardless of choice and eligibility requirements being met.

The plan was to open up several crisis care centers for youth throughout the state. This plan was not fulfilled – again for several reasons but mainly because there was NO cost savings in closing FHMC from which these crisis care centers were to be funded.

Developmental Disabilities Administration was able to secure one home in Lakewood which can care for only 3 youth at a time. Since opening this Crisis Care Center (you heard one mother, Janice Laurence, talk about her son’s utilization of this center) in December 2012, 12 youth have been able to access these services. Of those 12, only one was able to return to the family home – all others either went to an RHC or a licensed residential home for youth. The daily cost of care in the Lakewood Crisis Stabilization is $1,165.

Frances Haddon Morgan Center (which today sits empty and unused) was able to care for about 22 respite clients per month for a cost of at a daily rate of $541 (federal and state costs combined) – clearly, utilizing the RHC for much needed respite was not only more cost-effective but much more accessible to our communities in need.

Data taken from the Executive Management Information System also clearly indicates how our RHCs serve those in our communities throughout our state. We often hear about the number of “permanent” residents in the RHCs but rarely hear about the much larger numbers of community residents who receive much needed crisis care and respite care. The community members served in our RHCs are more numerous than the numbers of permanent residents served in the RHCs. Also, the RHCs can provide this expert and comprehensive care at 46% of the cost for similar care at the Crisis Stabilization Center in Lakewood.

It only makes sense to continue to utilize the facilities we have and use them to capacity to best serve our communities in need. Closing or consolidating our RHCs is not the answer as evidenced by the wasteful “experiment” we have experienced due to passage of 2SSB 5456.

number of community members who access respite services

Average Daily Cost of Care for Respite

References:

Data received from the Department of Social and Health Services, Executive Management Information System with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions

Report to the Legislature – December 5, 2011

TVW.org 25th Annual King County Legislative Forum sponsored by King County DD and The Arc of King County

http://54.185.64.84/index.php?option=com_tvwplayer&eventID=2014110041

Crisis Care in Crises

It’s not secret, our state has made a huge mistake. We have legislated a huge gap in care for our families experiencing life with intellectual disabilities, particularly if the person is 21 or under.

In 2011 our state passed SSB 5459. This bill had several critical errors – some based on faulty cost reports and projections and some based on poor judgement and understanding.

Poor Judgement and Understanding:

Crisis care, respite and intense out-of-home placements were eliminated for those 21 and under. The thought was that “children need to be at home with their families.” Yes, that is true but as one of the directors of the newly forming Crisis Stabilization Unit testified, “some families do not want their kids back home.” That statement made me physically ill because it stigmatized families who are not able to safely care for their children, no matter how much they WANT them at home, it is impossible. To say these families “do not want their kids” home shows such disregard and misunderstanding for the stress these families live with.

Five years ago I never, ever would have imagined that I would not be able to care for my son. On the eve of my 55th birthday, as I look back over the past 5 years, our family went from one of unity and cohesiveness to obliteration. The only reason that we are here to tell the tale is due to out-of-home placement at the intermediate care facility when my son was 15 years old. The heartache I felt making this decision was unbearable and still, today, it greatly saddens me that I cannot care for my son – no matter how much I would love to, I can’t.

In the past 5 years not only did my son’s dementia worsen which led to prolonged mania and psychosis – on top of his already profound developmental disability, but in my attempts to care for him, my health plummeted. I have had 27 hospitalizations and/or surgeries in the past 5 years with many complications. Injuries incurred from caring for my son began to build up over time and I felt like I basically imploded. The development of a chronic lung disease (autoimmune) and the related symptoms make it impossible for me to care for my son – yet people don’t see this part of the family’s lives.

Rather than understand, people judge – as the director did of the families who could not have their child return home.

Faulty Cost Reports and Projections:

Frances Haddon Morgan Center (FHMC) was closed. FHMC could care for 60 individuals with full, comprehensive, intense crisis care, provide much needed respite, and provided much of the care for our youth and for those with autism. There were some extremely costly errors which led to “savings” projections which were actually Costs. This never should have happened, but it did.

I can’t even begin to write about the stupidity of the decisions so am just providing this photo. I think it will give an idea of what happened – how much more money was spent to serve about 1/10 the people – certainly not a cost-effective or sustainable decision – serving much fewer people for over twice as much!

average cost per day per resident

According to Informing Families Building Trust (Developmental Disabilities Council) the passage of SSB 54559 in 2011 created a huge gap in services. 

Not only did this bill close Frances Haddon Morgan Center but also prohibited those under 21 from being admitted to an RHC.   Many of those in this age group would have gone to Frances Haddon Morgan Center for crisis care and respite. 

To bridge that gap, DDA opened a house in November 2012 which could house 3 youth ages 8-21.  The services are very similar to what was provided at Frances Haddon Morgan Center.  The goal was to take these children as they are in the community, stabilize them as much as possible and slowly integrate them back into the community.

There have been 7 children able to utilize these services, 2 are currently residing there, of the 5 who have left, only 1 was able to return home with supports.  The other 4 were placed in voluntary placement services – an intensive out of home placement for those under 21.

Please review the “savings” from closing Frances Haddon Morgan Center.  According to the reports we would have had a large savings to not only open two crisis stabilization centers but provide more community care.  Unfortunately, the projections were so wrong that we have now created more of a crisis.

Please do not let this happen again – It is critical to review the DD Audit and understand the information provided in that report is as skewed or more than the data provided in 2011 for the disasters that SSB 5459 produced.

 

Arc alert

Today, the Arc of Washington issued an action alert.  There is inaccurate and misleading information in their alert.  I have written to Sue Elliott,  Executive Director and Diana Staddon, Policy Director with my concerns about using false information which doesn’t even relate to the bill (SB 5371).  When, and if, I hear back from them, I will post their answer.  I do hope they correct their errors.

I understand The Arc opposes this bill but I do need the organization to explain why and the reasons.  They claim SB 5371 is bad policy.  I claim their false information and unrelated information are bad policy.

The is funded with thousand of public dollars and I do not appreciate my dollars being spent in “false advertising”  and especially when those dollars are to be used to advocate for improvements to the care of our citizens with developmental disabilities but are used against them.  I believe we can do better if our public was allowed to be better informed.  I do not want to post their alert since it provides information which is wrong.  You can contact The Arc  – Washington State for information.

I need to post this on my own blog because I am blocked from posting on The Arc websites.  I cannot give the link since I am unable  to access their website. They consider my questions an attack against their organization.  All I would like are answers.

If you are interested I have attached my letters to our Senate Health Committee here.  I have commented on both SB 5370 and SB 5371

Senate Health Committee SB 5370

Senate Health Committee SB 5371

AFH citations for repeated violations

WA State Licensed Adult Homes for People with DD Citations 2011 and  2012 Samples

Washington State Discriminates against youth with DD

 

 

 

Our state has passed legislation into law which discriminates against our youth with developmental disabilities who have high

support needs – look at the facts – 42.3 % of the documented cases reviewed for RHC admission were of people 21 and under.

 

Developmental Disabilities Admissions Review Team Data from September 25, 2011 

admissions Review Report

 

 

11 of the 26 documented people who applied for RHC admission between September 2011 and September 2012 were age 21 or under.

 

That is 42.3% of the documented population.  This is clearly different than the story we hear from The Arc and DDD. 

Our young population is in need of these support services and our state is denying them these supports. 

 

 

(This does not include those who requested admission and were denied by their case manager.  This is the first step and if the person insists and specifically requests to have their person reviewed through the admissions review team, then it gets to this point.  We have no measures to know how many, in reality, are denied admission to the RHC and we do not know what the follow up of those people who were told “no” by the case manager is or what became of them.)

Below is an excerpt from a letter that I wrote to the DD Service System Task force on September 5, 2012.  I have outlined some of the issues regarding this discrimination.  The 18 year old in this letter is awaiting an appeals hearing with DDD.  They denied him admission but he is allowed to continue his short term stay until the appeal trial.  He is doing well with the needed supports at Fircrest.

Letter to Washington State Developmental Disabilities Service System Task Force

September 5, 2012

 

 

Age of Clients

I am greatly disturbed by SSB5459 which passed into State Law discrimination against our youth who may need the level of support services only provided in the RHCs.  I can find no mention of limiting support services by age in either the US DD Act or the 1999 US Supreme Court Decision Olmstead which would support such discrimination.

In regards to the Federal Home and Community Based Service Waivers, these are set up to allow for choice to not live in an institution and to promote community care.  The states may have choices to limit waivers to certain groups or populations but I do not see information from CMS which allows a state to deny those under 21 the supports services needed in the ICF/ID or that the ICF/ID has a federal age requirement for admission.  (See attached document regarding ICF/ID services) When there are no community alternatives for one under 21 who may need these support services and the person is denied long term admission to the RHC, where is this person supposed to go?  The issue is not if these services are available, they are – the issue is denying these services to those under 21 only due to the fact of this person’s age.

Former Secretary of the Department of Social and Health Services, Susan Dreyfus, responded to my question regarding this issue with “they still have a choice – they can send their child out of state.”  Why, when we have the appropriate services right here in our state would we choose to send our children to other states to receive the same service?

Below are some excerpts from the HCBS Waiver applications and contracts which refer to choice.  These individuals have been assessed to have the level of care support needs of the RHC but are not given the choice to utilize those services.

Currently, I am working with a family who has an 18 year old boy at Fircrest.  They family has requested that he receive long term placement at Fircrest given his intense support care needs and having no safe alternative in a community setting for him.  He had been on the CIIBS waiver until his recent short term admission for crisis care at Fircrest. The family has looked at over 8 community placements and with each setting there would be significant problems regarding safety for this individual. These issues range from close proximity to busy streets (this boy has a history of elopement and is very fast and strong) to high staffing turnover (up to rates of 49% in community residential homes) which would significantly put this young man at risk given the fact that he is non-verbal, aggressive, has PICA, does not sleep through the night and has to be moving constantly.

Since being on a short term stay at Fircrest, this boy has improved with his sleep patterns and behavior and has met the short term goals.  The reason he has met these goals is because he has the support staff that he needs to be successful at Fircrest.  This issue of support needs is often misunderstood.  This does not mean that now this boy is “cured” and he can return to his old environment and he will maintain the skills that he has accomplished at Fircrest.  This means that in order to be successful, he needs to have these supports in place.  Without these supports his life is at risk.

I would really like to emphasize this fact of support needs.  These individuals are not individuals who will learn a skill then go on their way.  These are individuals who will need to have these supports throughout their lives.  It is the level of supports which are stable and sustainable that enables these individuals to be successful and contributing members of our community.  Removing these supports puts their lives at risk.

Please take into consideration these issues when looking at the DD System of supports and the role of the RHC in that system.  I believe that the RHC is a critical part of the continuum of care service model which is a model that can best serve ALL citizens with developmental and intellectual disabilities.

Please see the link below for more information on this issue.

 

Washington State Discriminates against youth

 

DD Systems Task Force – Stacked panel

Tomorrow is the second meeting of the DD Systems Task Force in Washington State.  This task force was created from legislation SSB 5459 in 2011 which closed one of our states Residential Habilitation Centers (RHCs)  and  denied access to services for those under 21.

Agenda for September 6, 2012 meeting

SSB5459 Overview

This task force is faced with the task of reporting to the legislature in December 1, 2012 and they are just now getting underway.  This tack seems overwhelming to me.

I would love to attend this meeting but I work.  As in most every other decision that has been made regarding the lives of our most vulnerable citizens, the decision are made by those who do not work or live with these individuals.  The decision makers are people who work in other areas of DD advocacy and part of their job is to go to these meetings and hearings.  They are paid to attend, have their travel expenses paid and probably a per diem.  The advocates who are the experts in caring for our most vulnerable citizens and who understand the intense support needs are either busy caring for their loved ones or work in other jobs – jobs that do not allow them the freedom to travel to Olympia to be involved in advocating for our most vulnerable.

This imbalance contributes to our crisis situation.  On this panel, there is one person who is not a paid advocate.  She has to pay her own way to these meetings and she has to travel across the state.  I believe all others are able to attend as part of their jobs.  Is this really an evenly balanced membership?

Since I will be working at my nursing job tomorrow, I am unable to attend.  I have submitted the following letter and have attached the charts which illustrate the issues which I wish to address.  I do hope that the task force members have a chance to review this information and ask me for any clarification if needed.  I will be anxious to hear how the meeting goes tomorrow.l

 

September, 4, 2012

Dear DD Service System Task Force,

 

I am unable to attend the meeting on September 6 but would like to submit the following comments and concerns regarding the future use of our Residential Habilitation Centers. I am an advocate for a continuum of care which means that I believe we need to have a place for safe, stable, sustainable and cost effective support for all levels of support care needs of our most vulnerable citizens. A continuum of care means that I advocate for all levels – from the most intensive support care needs at the RHC to community homes to family homes. We cannot exclude one group based on support needs or age but must find a way to address the spectrum of needs and a continuum of care system does just that.

 

The main two issues that I would like to address are that of acuity (support needs) and age of clients.

Acuity (Support Needs)

1.   The report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” has some excellent information in it. The problem with this report is that the authors wrote “key findings” which are not supported by the data in the report. They also incorrectly combined the three environments which were studied and into two environments to report the “key findings.” My comments and concerns regarding this report which is often referenced are attached. In addition I have attached charts which look at the data in this report. From these charts, it is clear to see that the support needs of the those in the RHC are significantly higher than those in community or “other” residential settings.

 

2.   In reviewing the Certified Residential Providers Cost Reports submitted each year to the Division of Developmental Disabilities I have made a graph of the acuities and costs from these reports. It is clearly evident that the acuities (as reported as resident hours per day) in the community homes are much lower than the acuities of the residents in the RHCs. One reason for this is the number of residents who have high acuity levels in 3 or more assessed areas of support.

When measuring acuity in 7 areas of care, there is a major difference between a person who has high acuity in 1 area and low in 6 areas and a person who scores high in multiple acuity areas. This fact is not addressed in the report by Lucenko and He but by looking at the data they present I have been able to get a rough estimate of the number of residents who rank high in 3 or more areas. The results of this are staggering and one can see the significant difference between the residents in the RHC and the residents in community residential settings.

Each additional area in which a resident scores “high” can exponentially increase the level of support care needs for that individual. Yes, there are many who live in the community who score “high” on at least one area assessed but for those who score “high” in 3 or more assessed areas, their care may be best addressed in the RHC – a facility which provides more stable and sustainable care and is cost effective for these high support needs individuals.

3.   As the acuity levels increase, the cost of care to safely care for these individuals increases too. This fact is evident in the information that the providers submit to DDD for reimbursement. Please see the attached information entitled “Cost of Care for 2011 for DD Task Force.” It documents the cost and the reported acuity level of the residents in each facility.

4. The increased cost of care is documented in the Support Intensity Scales data. This is measured in the section entitled “Exceptional Support Needs”. Graph on attached document.

Age of Clients

I am greatly disturbed by SSB5459 which passed into State Law discrimination against our youth who may need the level of support services only provided in the RHCs. I can find no mention of limiting support services by age in either the US DD Act or the 1999 US Supreme Court Decision Olmstead which would support such discrimination.

In regards to the Federal Home and Community Based Service Waivers, these are set up to allow for choice to not live in an institution and to promote community care. The states may have choices to limit waivers to certain groups or populations but I do not see information from CMS which allows a state to deny those under 21 the supports services needed in the ICF/ID or that the ICF/ID has a federal age requirement for admission. (See attached document regarding ICF/ID services) When there are no community alternatives for one under 21 who may need these support services and the person is denied long term admission to the RHC, where is this person supposed to go? The issue is not if these services are available, they are – the issue is denying these services to those under 21 only due to the fact of this person’s age.

Former Secretary of the Department of Social and Health Services, Susan Dreyfus, responded to my question regarding this issue with “they still have a choice – they can send their child out of state.” Why, when we have the appropriate services right here in our state would we choose to send our children to other states to receive the same service?

Below are some excerpts from the HCBS Waiver applications and contracts which refer to choice. These individuals have been assessed to have the level of care support needs of the RHC but are not given the choice to utilize those services.

Currently, I am working with a family who has an 18 year old boy at Fircrest. They family has requested that he receive long term placement at Fircrest given his intense support care needs and having no safe alternative in a community setting for him. He had been on the CIIBS waiver until his recent short term admission for crisis care at Fircrest. The family has looked at over 8 community placements and with each setting there would be significant problems regarding safety for this individual. These issues range from close proximity to busy streets (this boy has a history of elopement and is very fast and strong) to high staffing turnover (up to rates of 49% in community residential homes) which would significantly put this young man at risk given the fact that he is non-verbal, aggressive, has PICA, does not sleep through the night and has to be moving constantly.

Since being on a short term stay at Fircrest, this boy has improved with his sleep patterns and behavior and has met the short term goals. The reason he has met these goals is because he has the support staff that he needs to be successful at Fircrest. This issue of support needs is often misunderstood. This does not mean that now this boy is “cured” and he can return to his old environment and he will maintain the skills that he has accomplished at Fircrest. This means that in order to be successful, he needs to have these supports in place. Without these supports his life is at risk.

I would really like to emphasize this fact of support needs. These individuals are not individuals who will learn a skill then go on their way. These are individuals who will need to have these supports throughout their lives. It is the level of supports which are stable and sustainable that enables these individuals to be successful and contributing members of our community. Removing these supports puts their lives at risk.

Please take into consideration these issues when looking at the DD System of supports and the role of the RHC in that system. I believe that the RHC is a critical part of the continuum of care service model which is a model that can best serve ALL citizens with developmental and intellectual disabilities.

 

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

 

 

 

This means that each resident, on average, scores high in 3.6 (RHC), 2.1 (Community)  and 1.6 (Other) areas assessed.  Each additional “high” score greatly increases the overall support needs of that client.  These areas need to be looked at as a “whole” and from this picture, it is clear that on a “whole”, the average RHC resident has a significantly higher support need than the average community or “other” resident.

 

 

 

 

 

 

 

These “exceptional needs” score only mean that for the same score assessed, these are exceptional and the cost of care for these individuals will run higher than a person without this “exceptional needs” score.  One can see that the residents in the RHC have higher “exceptional needs” than those in community or other.

 

 

 

 

 

 

 

 

 

Information for the chart above is taken from Support Intensity Scale

 

 

Works Cited

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved from http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities: http://www.siswebsite.org/cs/SISOnline

 

 

 

 

Senator Adam Kline and Developmental Disabilities

Senator Adam Kline sponsored a devastating bill in Washington State.  This bill, SSB 5459, essentially closes off services to those under 16 and greatly limits services to the age group of 16-21.  In doing so, there are no replacement services for these youth and their families which support them.  This was done to save money(it won’t) and promote community networks (it won’t).  How can our public be so fooled by the misleading and false information which was used to get this bill passed?

I am so concerned about our community with Intellectual Disabilities and their families.  I’m particularly concerned about our families with younger kids coming into adolescence.  Where are they going to turn for help?  Who will be there in times of crisis?

The Developmental Disabilities Services Task Force was formed with the passage of SSB 5459.  This task force has met once in October 2011.  This task force was to have a report prepared for our legislature by December 2012.  How is this going to be done when there have been not meetings or assignments or communication?

I wrote the following letter to Senator Adam Kline and the members of the Task Force today.  I had written several times recently inquiring about future meetings but never received a response.  I do hope to receive a response to the following letter, if not from Senator Kline, then from someone who may know what is happening with the Task Force.

Dear Senator Kline,

I am writing this letter to you and others on the eve of my meeting with Gubernatorial Candidate Jay Inslee.  I have written to you several times in the past couple of years on these very issues but have never received an answer from you which indicated that you read the research or data I presented.

The Developmental Disabilities Task Force, which was formed out of the bill you sponsored, is due to have a report out by December 2012.  This task force has had one meeting at which essentially no work or plans were completed.  I have written to you, the co-chairs and Brittany Yunker, Senate Committee Assistant, for information regarding future plans.  I have not received an answer.  Given that this task force has an agenda to complete and report on (http://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/5459Overview.pdf)  I’m curious when and how this work is going to be done.

In reviewing my information regarding the care of our citizens with Intellectual Disabilities, I have come across some very disturbing correspondence between you and others.  You have written to me about credibility and division and your writing exemplifies these problems and exacerbates the false and misleading “research” which is presented in order to push the agenda of consolidation and closure of the RHCs.

I believe in a continuum of care which upholds both the US DD Act and the 1999 US Supreme Court Decision Olmstead. I understand from your quote from a letter you wrote May 9, 2011 “And again, this whole conversation is only about the costs, leaving entirely un-addressed the notion that individuals ought not to be institutionalized when their needs for habilitation can be met in a less restrictive alternative.   (This is not merely my notion; it’s the constitutional right to due process decided by the US Supreme Court in the Olmstead case three or four years ago, and enforceable by the federal courts in the event the Justice Department should decide to proceed.  But let’s leave that aside and just talk numbers for now.)” that you may need to re-read Olmstead to understand what the decision is actually saying.

It appears to me that you are missing the point that for most of those who live in the RHC, the RHC is the LEAST RESTRICTIVE ENVIRONMENT for them. Olmstead supports the individual/family/guardian and professional’s choice and opinion on deciding what is the most appropriate environment for that person. Nowhere in Olmstead does it state that people should be deinstitutionalized just for the sake of deinstitutionalization.  On the other side, I have not heard any advocate state that people should be institutionalized against their choice either.  I do believe that we all support that in our advocacy.

One of your many criticisms of me is that I do not give resources and citations ( a criticism which I believe is unfounded – if you read any of my research or letters you would see all the citations given) yet you write “The question is whether those higher-acuity individuals remaining in state institutions can thrive in private community placements.  The consensus of parents and professionals is that they can.  There is certainly space for them.”  I’m curious what parents and professionals made up the consensus of this opinion?  Certainly none that chose to have their family member live in the RHC.  Where is the data which supports your statement?

You also write “It is up to us legislators to endorse policies that encourage parents and care-givers to voluntarily choose the community because it’s more productive. This means also that we need to move some percentage of funds from the institutions to the community, as we consolidate the institutions by closing two of them.”  I can tell you as a parent of one of these young folk who need the RHC to survive, I find anyone who would try to coerce me to “voluntarily” make a decision to move my child to a home which would not only be inadequate to serve his needs but be unsafe, as a person who endorses negligence.  Is this the type of advocacy that you believe a person should choose?  Would you choose negligence for your child?

I see over and over again in your letters the phrase “pro-community” and your plea to DD advocates who are “pro-community” to have them write letters to other legislators as in this statement you wrote  “many pro-community folks know they need to explain to all the legislators from Mars that they need an expansion of the community network, which can’t happen while all the money is being sucked up by the RHCs.”  Is this how SB5459 was passed?

I know this letter is a difficult one but these are difficult times.  It is time for you and other to answer the hard questions and to look at data from a different angle.  Times are changing and there is a whole group of young people out there and young families who will not have any services because of the misinformation which has been allowed to take over and control everything.  It is time to listen to those of us who are the experts – those who have young children with intensely high support needs, those of us who’s families have disintegrated from the never ending crisis – both emotional, medical and financial, and those of us who have survived.  The ones who have survived and are here to tell of the survival are the ones who were lucky enough to be allowed to  be admitted to the RHC.

As always, I welcome your comments and questions.  I will gladly answer them and point you to every citation and original source from which I draw my data.  You may also visit my blog at www.becausewecare1.com for many of this same information.

I will be sharing this letter with people in hopes of educating our community to the issues from a more open and honest perspective.  I have also attached a letter which Lance Morehouse wrote to legislators in response to your plea for letters and also my response to Lance.  These letters show differing perspectives from parents with children with high support needs.

 

There is a way to serve all and that is with a continuum of care. 

 

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Lance Morehouse letter to legislators supporting consolidation

 

Cheryl Felak response to Lance Morehouse letter to legislators