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.

Integrity – legislation passed based on false information

Our state saw some devastating legislation passed in 2011 in Senate Bill 5459:

  • One man died from negligence – there was laundry detergent stored in a milk carton, left on the counter and this man, who had been moved out of his home at Frances Haddon Morgan Center to a “community” home drank it and consequently died.  This man had a known disability of PICA (eating non-food items) but regardless of that, the fact that a non-food item had been stored in a food container is negligence – not accident.   I can only imagine the pain and suffering this man experienced in the few weeks between the time he drank this and when he eventually died.  He suffered immensely.  Yet does anyone care?  There were no charges filed.  If this had occurred in a day care center I can assure you there would have been charges filed but because this man had a developmental disability and the state was his guardian, there is no one person to watch out for him and advocate on his behalf.  
  • Our state has passed a law which discriminates against our youth with developmental disabilities.  Youth with high support needs who could be cared for safely and appropriately in one of our remaining residential habailitation centers are no longer able to access those services.  The only option left is crisis hospitalization or jail.  Is this progress?

What is also very disturbing is that this legislation was passed based on false information which was stated as “facts”.  These “facts” are not supported by the data from which they were drawn but the legislator who sponsored this bill chose to ignore any information that he found “uncomfortable”.  Others, when questioned about the supposed facts told me that they say no benefit in reviewing the questions I raised because the state did the research and  wondered why I would even question what the state provided.  This is they type of “leadership” we have.  This is frightening.

It’s time to pull their heads out of the sand, face the uncomfortable issues and address the questions.  Until this happens and there is a real dialogue, there will not be progress.

I have written to the Research and Data Analysis Division of the Department of Social and Health Services asking them to review the “research” report which was used extensively in this damaging legislation.  I have written to the Developmental Disabilities Service Task Force raising critical questions that need to be addressed.  I am hoping to engage in some real discussions which will tackle real issues and facts.

DD Task Force Committee wrap up

RDA integrity attachment

RDA Integrity attachment

FHMC Quality Assurance Report to Legislature

Are you afraid you are going to lose services? You already have!!

We have all lost a great deal of services and are at risk of loosing more.

If our state continues along the route it is going, with the human experiment of using our most vulnerable citizens as subjects who have not even consented to being involved,  by evicting them from their homes and moving them into more restrictive environments in a different community – we  ALL Lose.

This has been said to be a cost saving measure – it has now been proven and acknowledged that this will not save any money  but will in fact cost more.  How then, if this experiment is more costly than the services these folks have and are happy and satisfied with,  why then, are Senator Adam Kline and others continuing down this path?  Are they too proud to admit they may have made a mistake?  They say they care about our citizens, they say they are concerned about those without any services.  Their actions do not support what they say.

It is really time to eat that pride and stop this process before more people are hurt and more people lose services or go into crisis.   It’s not too late for most.

Unfortunately, it is too late for those 21 and under.  

Our state has taken away a life-saving choice for our children which some of you may need in the future.  Regardless of what is happening now with your child, there may come a time in your child’s life in which you may need to consider out of home placement for his/her safety and health.  This is not an easy choice to make at any time but sometimes it’s the best choice.

Right now there are several children 21 and under who have stabilized in the Residential Habilitation Center  (RHC)because they now have the support they require to stay safe.  These families have requested admission but our state is denying them admission to this life sustaining support system only for the fact that they are under 21.  There are no alternatives for these families and they now have to fight and hire lawyers so that their children may remain safe.  DSHS continues to deny admission.

Please, for the sake of all, write to your legislator, the DD Service System Task Force (address below) and ask them to repeal SSB5459 which prohibited those under 21 from accessing these services.  Also, write to tell them that you support a continuum of care which includes the RHC – regardless if you ever think that you will need it – because it is the safety net for all of us.

As a parent, being told that there is no place in our community which can care for your child and for you to call the police if there is a crisis is not something that any parent, particularly a parent of a young teen with a developmental disability, wants to hear – yet this is happening and has been happening because our state has taken away the freedom of choice as guaranteed in the US DD Act and the US Supreme Court Decision of Olmstead.

We need to preserve these choices so that all people can have a safe environment in which to live.  Even if this is not the choice that you would make, it is a choice that many families do make because they know it is the least restrictive environment for their child and a community in which their child can be safe, supported and participate in life to their fullest.

 

You can write to the DD Service System Task Force via Brittany Yunker – her email is Brittany.Yunker@leg.wa.gov

 

Or visit the Website for the Task Force at:

http://www.leg.wa.gov/JointCommittees/DDSSTF/Pages/default.aspx

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Human Subjects Research being done on our most vulnerable citizens with no consent or ethical review.

Senator Adam Kline is proposing legislation, again, which is an experiment on our most vulnerable citizens.  Why are we allowing this happen right under our noses and why aren’t more people calling him and others out on this unethical practice?

The year 2011 saw passage of a bill which legislated age discrimination in violation of the US DD Act and the US Supreme Court Decision Olmstead by not allowing those 21 and under to receive the life saving and life sustaining services in the Residential habilitation Center (RHC).  This bill also called for the closure of one of our state’s RHCs and froze admissions to another one.  There was one negligent death just one year ago of an individual who was evicted from his  RHC home into his “own” community home.  He suffered needlessly due to incompetent and untrained caregivers before dying from swallowing laundry detergent which had been stored on the counter in a milk carton.

Now, Senator Kline is again pushing our DD Service System Task force to run more experiments our most vulnerable.  He is advocating for closure of another RHC (he states 360 people – which is the number of people who reside at Rainier School) in the quote below transcribed from the Task Force meeting on October 9, 2012.

“You’ve got some number of families – of those 360,  would want to have their loved on in a RHC, receiving the kind of care that they have and their choice is in “hither or yon” or in the community.  The whole point of sub F (part of legislation that Senator Kline is trying to get passed)– take a look at it – is to guarantee as best we can – that the treatments – we spell it out – medical, nursing, dental, behavioral, mental, habilitation, employment, day support, that those, that the degree of applicability in the RHC is met in the community above and beyond what the residential provider provides.

So, the point is there may be some people, there will be some people for whom, a small number, for whom it will be more expensive to provide a vast needed bundle of services and supports in the community more expensive than it would be in the RHC.  I get that – for a small number of people and we’ll do it because for the much larger number of people, the same or better services can be provided at less cost and we can eat into that 13,000 waiting list.  Okay, there is an equity involved here, alright? ”

October 9, 2012

Developmental Disabilities Service System Task Force

Olympia, WA

My questions:

Given that Senator Kline is clearly talking about closing an RHC and  he clearly states that community services will be more expensive.  Yet, Senator Kline has idea what the number will be of those whose care will be more expensive in the community than in their current RHC home.  This means that he will have to have a threshold of who will receive appropriate care and who will receive negligent care .

1.  How many people will Senator Kline allow to have their assessed needed services in the community?  10%, 25%, 50% 75%?

2. What is the cut off for not having ones assessed needs met?

3. What happens to those who then fall on the other side of that cut off?

4. Do we accept negligent care for them because their care is now too expensive?

Why would anyone consider moving people who are happy in their homes, not requesting to move and have their assessed services met in a cost effective system to an untested and most likely more expensive system?

Isn’t this illogical and unethical?  Well, this is exactly what Senator Adam Kline and others who are pushing for – an  expensive and experimental system change.  Where are the ethicists in this experiment?

Look at the  Code of  Federal Regulations  and ask about the protection of human subjects.  Why are our legislator allowed to play experiments on our loved ones without an ethical review team looking into this.

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Please look at the Nuremberg Code, the Helsinki Agreement and the Belmont Report (A Guide to Research Ethics, 2003) below and tell me why these experiments are even being talking about without going through an ethical review.

The Nuremberg Code has 10 guidelines:

1. Research participants must voluntarily consent to research participation

2. Research aims should contribute to the good of society

3. Research must be based on sound theory and prior animal testing

4. Research must avoid unnecessary physical and mental suffering

5. No research projects can go forward where serious injury and/or death are potential outcomes

6. The degree  of risk taken with research participants cannot exceed anticipated benefits of results

7. Proper environment and protection for participants is necessary

8. Experiments can be conducted only by scientifically qualified persons

9. Human subjects must be allowed to discontinue their participation at any time

10. Scientists must be prepared to terminate the experiment if there  is cause to believe that continuation will be harmful or result in injury or death

Helsinki Agreement

•  The necessity of using an independent investigator to review potential research projects

•  Employing a medically qualified person to supervise the research and assume responsibility for the health and welfare of human subjects

•  The importance of preserving the accuracy of research results

•  Suggestions on how to obtain informed consent from research participants

•  Rules concerning research with children and mentally incompetent persons

•  Evaluating and using experimental treatments on patients

•  The importance of determining which medical situations and conditions are  appropriate and safe for research

The Belmont Report outlines:

1. The ethical principles for research with human subjects

2. Boundaries between medical practice and research

3. The concepts of respect for persons, beneficence, and justice

4.  Applications of these principles in informed consent (respect for persons), assessing risks and benefits (beneficence), and subject selection (justice)

Responding to Senator Adam Kline’s questions

After reading the  letter from Senator Adam Kline  on the previous post, I though people may also be interested in my response to him.  I am posting it below.

 

From: Cheryl Felak [mailto:cherylfelak@msn.com]
Sent: Tuesday, December 13, 2011 11:34 AM
To: adam.kline@leg.wa.gov
Subject: RE: DDD Budget Errors and Missing Data
Dear Senator Kline,

To answer your questions – I’ll first tell you that every letter I have written and described I have attached the sources and original data.  They are listed at the bottom of every letter – so to correct you, I’m not sending out “generalitles” and I am taking responsibility for research. My issues are not rhetoric or false accusations and for someone to say that I can tell that the letters have not been read.

I have attempted to shed the light but people have only said “I’ve seen the data” to which I do not believe they have – they have seen the presentations that Don Clintsman and others from DSHS report.  Those presentations are generalities and do not give the results.

If you would like to see that data (even though I have already sent references and links in every letter  – or at least try to) you can see them all on the www.becausewecare1.com website.  If you look at the page “Questions to ask DSHS and DDD” I have put most of the documents there and will be adding more.

1.  Cost of Care data is what I’m referring to specifically.  I have the actual daily cost of care for the 30 highest costing residents that was given to me by Don Clintsmand and Mark Eliason.  This again is only the residential (kind of like rent) cost and nothing more.

2.  Cost of care.  You can take a look at the DD-EMIS Waiver data – I reference this in almost all my letters and when you look at it you will see that the cost of care that is reported is only a fraction of what is spent for waiver clients.  DDD uses this fraction of a cost to say it is what the whole cost is.

3.  I have much objective data – you can go to my website at www.becausewecare1.com and I have attempted to post it all there.  I have been writing to  DSHS and DDD administrators this past year and have gained much data.  Data that is not shared with legislators in the reports that are presented.

4.  I requested copies of the Certified Residential Programs Cost of Care reports that each agency must submit to DDD each year.  I used this objective data to come up with the cost of care for a client in a supported living agency home and what it costs that agency.  I have referenced this also in many letters and this is in the citations that I give you in the letters.

I would love to sit down with you and actually show you the charts and data to explain them.  There is so much information and it’s very confusing and I have found that many who analyze it do not even understand how the waivers work or what is included or not included in them.

I fully support a continuum of care.  I recently attended the Community Advocacy Committee meeting (to which people who support a continuum of care are not invited because one must sign a contract that basically states that you want to close the RHCS.  I can’t do that) Much of the meeting was about advocacy and had much false information regarding costs.

I brought this issue up with Lance Morehouse and Sue Elliott regarding why they report these costs and they say that they only take what DDD has given them and do not question it.  I want to see the sources and that’s why I have researched this and have seen that what DDD reports as cost of care for community living is only a fraction of the true cost.

This is what I learned from that meeting also and I don’t believe that you may have heard this from others:

The last remaining residents from Frances Hadden Morgan Center are only moved to temporary housing.  As reported by Don Clintsman, there was a smooth transition.  These people do not have homes yet.  The Washington State Housing Fund awarded Inland Empire Residential Resources $1,249,175 to build SOLAs in Kitsap (3) and King (1) counties. (http://www.commerce.wa.gov/DesktopModules/CTEDPublications/CTEDPublicationsView.aspx?tabID=0&ItemID=9621&MId=870&wversion=Staging see page 3)  Once these new SOLAs are built, these residents will move into them.  I don’t know what land they will be built on or if anyone knows that yet.  I’m hoping to find that out soon.

I learned that the vacancy rate as reported by Community Resource Services Association only means an empty room.  That room is not staffed.  I have asked Scott Livengood what the time frame would be and what it would cost to hire and train staff so that a vacant room could actually be used.  I have not received an answer.

I have toured a community ICF/DD – it has 10 rooms and is licensed for and states they do respite.  When I was there, only 4 rooms were occupied and in fact one of those rooms was for a parent to use since their census was low.  I asked about respite and was told that they don’t do that- it’s too expensive and they would have to hire staff for respite and the state does not pay enough for it, they lose money so no, they do not take respite clients.  Yet, they are listed as a respite provider.

The Quality Assurance Assessments that DDD states they do are not done. I have a multitude of emails from Janet Adams (QA Chief) and Don Clintsman saying they are not done.  I write every couple of months asking about them – still not done – no funds or time to do them. I have the actual questions and they are not objective and I would not consider them a good quality of life and quality of care assessment for our residents.  I have written to the committees that work with this issue and will continue to try to have our state adopt an objective measure and one that non-verbal people can be involved in.

Thank you for contacting me.  I hope that this answers some of your questions and helps to shed light on some of the information that I am trying to share.  These are not empty accusations but facts from objective research.  Please let me know if you would like to meet and I’d be more than happy to share more with you.

Cheryl

Stickin’ my neck out – Part 1

I will have to keep repeating myself and trying to reach as many people as I can with the hopes that you all start to ask the same questions that I have been asking.

Given the illogical data from the Division of Developmental Disabilities which almost all the puppet DD Advocacy groups use as truth,  I had to ask where the data came from.  No one from The Arc (either Washington or King County), the Developmental Disabilities Council or Disability Rights Washington could answer my question with anything but “that is what DDD tells us and we don’t question them.”

Well, I do question them because their data just does not make sense.  The more I look into their “research” and data, the more I see that they give extremely misleading information to base legislative policies on. They manipulate good data into nonsense.  Some reports hailed as fact do not draw conclusions from the  researched data but are  manipulated to fit the agenda which as become truth.  These reports, which could be beneficial if the conclusions actually came from the data, are in fact misleading at best.    I  am continually amazed at their presentations regarding their misleading data (specifics below) and the fact that many legislators rely on their information and believe they are supplying full and correct information.  To question them is suspect.  I know – I’m suspect.  That’s okay though because it may help to open some eyes.

Looking through this blog you will find much research and many questions – none have been answered by DDD yet I have been chastised for asking and criticized  for being too generalized in my accusations against DSHS and for not giving resources.   See the message which Senator Adam Kline sent to me:

From: Kline, Sen. Adam [mailto:Adam.Kline@leg.wa.gov]
Sent: Tuesday, December 13, 2011 10:57 AM
To: Cheryl Felak
Subject: RE: DDD Budget Errors and Missing Data

 

Ms. Felak,

Please be more specific.  Your frequent accusations against DSHS are ineffective so long as you state them solely in generalities, and do not take responsibility for researching and stating the facts as you believe they should be stated.  These criticisms have the effect of increasing the heat without shedding any light.

I have at least these three questions.  Please answer them in sequence, and in detail. 

First: What data are you referring to? 

Second: As to those DSHS statements, what part(s) of it is/are inaccurate?  What objective evidence do you have of the inaccuracy?

Third: For each inaccurate statement, what is the true data that should replace it?  What objective evidence do you have for the replacement?

I look forward to a conversation based on information, rather than rhetoric and accusation.

Adam Kline

It is clear that Senator Kline did not read anything that I had sent to him  or maybe he didn’t understand what I sent to him.   This is a shame since he has been one of the major players in creating the continued crisis for our citizens with developmental disabilities yet is hailed as a hero by the very people who he is hurting.  This just does not make sense.  Is everyone brainwashed?

I had spoken with Scott Livengood of Alpha Supported Living and the Legislative  Advocate for Community Residential Services Association, regarding increasing wages to promote stability and sustainability in our community residential settings .  I supplied Mr. Livengood with the Certified Cost Reports from the Supported Living Agencies and data regarding costs and direct care.  It is obvious from Mr. Livengood’s response that he has not interest in working together to look at solutions to this critical issue.

From: Scott Livengood [mailto:Livengood@alphasls.org]
Sent: Thursday, December 08, 2011 1:20 PM
To: Cheryl Felak; chigman@gopsrs.org; melissajohnson@att.net
Cc: sue@arcwa.org; diana@arcwa.org
Subject: RE: Cmmunity Residential Services Association

 

Cheryl,

 

Thank you for your interest in trying to direct support to increase pay and stability for the dedicated direct support staff in community programs.  It would be great to have the full advocacy community lending their voice to stabilize, if not increase, the funding for community programs, rather than continue to cut the funding for staff compensation.  Why continue to target employees compensated at the lowest level in the range of residential settings?

 

With regard to the data you present, I wanted to make some corrections.  It is important to correct these inaccurate figures since one of the reasons that we continue to face cuts is because individuals and organizations present data that has been either incorrectly calculated or misrepresented to somehow convey that community programs are more expensive, therefore being overfunded.  By presenting reports that state community programs are expensive, it sends the message to legislators that we should be cut.  This is part of the reason why we are in this crisis.  

He also wrote:

Cheryl,

 

I assume people have chosen not to respond to your repeated emails and questions because, despite any answers provided, data compiled, or the numerous reports presented by DDD and outside consultants over the years, your consistent approach is to distort and manipulate the data. You choose to do this because you feel you understand the funding mechanisms and support systems in both community supported living and the RHC’s, and it supports your position to permanently maintain RHC services.  It does not seem to matter what information or data is provided to you, as you manipulate the data to communicate that community residential settings are as, if not more expensive than RHC’s.  Your lack of knowledge and understanding of services and funding is glaringly apparent in one report that you posted in which you claim that the “Cost correct for Resident Acuity” is over $850 per person for the Arc of King County, while you list the RHC costs at or below $200.  I fully understand that you are the parent of a person that resides within an RHC, and that you believe you are advocating for all people who experience an intellectual or developmental disability to have access to a continuum of care.  However, your approach plays as one-sided, is immensely inaccurate, slants towards de-valuing community residential services, and does not support a continuum of care.

 

By continuing to adjust data and inflate figures, you send the message to state personnel and legislators that community services are over-funded. You consistently take this stance despite the fact that funding has been cut twice in the last three years, outside consultant reports have stated that community services are under-funded, and the Governor’s current budget proposal contains an additional reduction of over $1 per hour for community residential services.  Your continued efforts on a daily basis to distort the truth and inflate the data to present community services as more expensive sends the erroneous and destructive message to decision-makers that services can be further cut.  You are playing a dangerous role in your efforts and as such, I ask if you are even aware that your efforts will lead to further erosion of community services for people with developmental disabilities and will have grave and serious impacts upon those individuals who currently live independently in the community with community residential supports?  You have stated that you are for a continuum of care, but your actions speak loudly that you want community services to be cut to a point that survival is not possible. I do not believe that you fully comprehend the consequences of your actions – while you advocate for the services you believe your child requires, you are simultaneously advocating to destroy those services that 4,000 other individuals with ID/DD depend upon daily. 

Mr. Livengood points out one major problem – the reports and data used over and over again by DSHS – they are not complete nor accurate.  I question them.  I hope others start to question them too – they are not logical.

Mr Livengood is very incorrect in other assumptions that he makes in the above letter to me but it is clear to me that I hit a nerve with him – he believes I am attacking his livelyhood – far from it.  I support community homes and hope to make them more stable and safe for those who need those services.  I would think that the Executive Director of a Supported Living Agency would also strive for that.  I have never said that community living is more expensive – I have said that for those with higher support needs, community living is more expensive for those people.  This is a fact and is well documented when looking at the cost reports that each agency submits to the  State.

I can say though, that from researching through all the Certified Cost Reports and visiting homes and neighborhoods,  Alpha Supported Living has a higher standard, provides more services, keeps their homes in better shape than most every other agency.  Alpha Supported Living provides a care for each home for resident transportation and has fundraising to pay for these services which are not provided for by the state.    Alpha Supported living is an agency to be looked at as a standard to strive for.

Misleading data will be in part 2

DD Service System Task Farce

So far I have learned that the task farce is not interested in facts – they refuse to look at real data or question the same recycled and inaccurate data which has been used over and over again for years – the very same data which has escalated the care crisis for our citizens with developmental disabilities.  Below are some of my observations:

  • There is no concern for escalating costs for programs which are new and untested which will serve less than 6 clients a year.
  • There is no awareness that the cost for high support needs clients in the community is much higher than the cost for a similar person in the Residential Habilitation Center (RHC).  Yes, we all know that there are many which very high support needs who live successfully in the community – but their costs are also high.  Lance Morehouse, Outreach and Advocacy Coordinator for King County Parent Coalition stated during one Task Farce meeting that his son lived at home for 17 years with the help of 19 hours a day of licensed nursing care without blinking an eye with regards to stating how he cares about all those without any services.   Am I missing something here?  How can one proudly state that they used that many service dollars (certainly much more than the daily cost for a client in the RHC) and then complain that the clients in the RHC (who gladly share services) are taking more than their fair share – doesn’t make sense to me.
  • There is no awareness that sharing services saves money
  • There is no awareness that people have a choice as to what the least restrictive environment for them is
  • There is no adherence to Olmstead with regards to choice, least restrictive environment or cost to the state.
  • It is not a concern that there is a huge lack of oversight in community residential settings
  • Even though our state has space and capability to provide services on the RHC campuses for those in community settings, the fact that it may take some” work to figure out an accounting system” seems daunting – yet on the other hand DDD has worked on building a program from the ground up with many unseen problems with a seemingly  limitless budget to service just a handful of clients.  This program will be experimental.  Is this a less costly and less labor intensive project than figuring out an accounting system?
  • Senator Adam Kline pushed his bill through the legislature based on inaccurate data and prematurely closed off services to our youth – yet he states he cares?   How can that be?

 

I realize that those in the driving seat will do whatever they want with little regard for facts or human lives at stake.  I find these actions negligent and inhumane.  Do they even care about the harm they are doing?

In order to change the name from DD Task Farce to DD Task Force, this group will have to look at accurate data.  I wonder if that will happen?

As many of you know we are in the midst of our DD Service System Task Force (or should I say Farce?)

Whoa – Senator Kline – Pull back the reins of deinstututionalization!

Senator Kline needs to have someone help him put the brakes on his road to destruction.  He is pushing for deinstitutionalization with no regards to cost or safety of this movement.  In listening to him speak in the DD Service System Task Force it is clear that his intention is to further the deinstutionalization movement, a movement which has already cost at least one person his life this past year from pure negligence, caused crisis in many families  – both those who live in the RHC and those in the community, and will continue to contribute to the crisis unless he is reined in and deprogrammed.

How many of you use a computer which looks like this one?

Or a cell phone such as this one?

If you were going to talk to others about computers and cell phones would you talk about the examples above?  I don’t think so.  I wonder why, then, that Senator Kline and other DD Advocates who push for deinstitutionalization with no regard to cost or appropriate care refer to institutions as this:

This is the photo The Arc uses when they refer to the ICF/ID

This is the photo that Disability Rights Washington uses when they refer to the ICF/ID

The photos below are taken at Fircrest Residential Center in Shoreline, one of our states ICF/IDs.  Do these look like the institutions above that The Arc and DRW speak about?

It’s time that those who are pushing for the deinstutionalizatoin with no regard to cost or care, reacquaint themselves with reality.  Their perceptions are as far from reality today as the computer and phone pictured above are from our computers and phones of today.

 

Please see the page entitled DD Service System Task Force for more information on this critical issue.  

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

Do you know what you advocate for?

As a parent who has survived a revolving door of crisis after crisis and of a child who was given a second chance at life by being allowed his right to admission into a Residential Habilitation Center, I write this letter with hopes and dreams but also with sadness.  If one person’s life is saved by this, it’s worth it and I do know that I become a broken record – but it is necessary to be heard.

When our child lived at home we had no other life but trying to keep him safe and healthy.  I was not able to attend any meetings or participate in  advocacy beyond trying to work with DDD to approve the “allowed” services and support on the waiver he was on.  After several years of fighting just to get him prescribed supplies (DDD denied them as ‘unnecessary”) I turned to The Arc.  The Arc was no support at all – I was told to call my legislator.  Well, as a parent in crisis, that recommendation seemed ridiculous (now I know different) but I think that someone from The Arc could have helped me – they had no interest in helping me or our son.

Up until then, I had assumed that The Arc and the other DD advocates really did have the best interest of those with Intellectual Disabilities (ID) in mind.  I now know differently.  I see the false advocacy and hidden agendas and mud slinging that is done in addition to the personal assaults and censorship that allowed.  This letter will name specific people  – a practice that I have realized that I need to do in order for them to have some accountability to our community.

Why aren’t these advocates held accountable to being responsible stewards of our public resources?  They are failing us.  It’s time that these folks answered questions and responded to inquiries, rather then writing personal attacks to and about the person who asks the questions.  I would gladly discuss the issues with them or answer their questions about the research I have done or the data I have collected – they are not interested in even looking at though.

Mark Stroh – Executive Director of Disability Right Washington 

Sylvia Fuerstenburg – Executive Director, The Arc of King County

Senator Adam Kline

Developmental Disabilities Council

Please ask these people to:

1.  Read the US DD Act

2.  Read the 1999 US Supreme Court Decision Olmstead

3.  Review the data regarding cost of care for people with high care support needs. (https://becausewecare1.com/2012/06/11/will-negligence-become-the-new-standard-of-care/)

4.  Defend the research in the Report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” – also, if you know anyone who does any research, have them take a look at this and see if they can defend the author’s findings.  Let me know what you find out.

5. Ask them if they understand the significance of the Support Intensity Scale and the DD Assessment which looks at activities of daily living. (https://becausewecare1.com/2012/06/09/to-the-arc-and-other-community-advocates-for-people-with-intellectual-disabilities/)

6.  Have them review the non profits and financial statements which work with ID clients in our state

7.  Have them look at the issues of, lack of stability and sustainability of our caregivers, which directly affects the health and safety of our loved ones. (https://becausewecare1.com/2012/06/14/how-can-we-have-stability-and-sustainability-with-up-to-45-staffing-turnover/)

I’m not interested in hearing the same rhetoric from The Arc Advocates and their constituents – that information is inaccurate and misleading.  I’m interested in speaking with those who actually would like to know what the data means, where it came from and what it represents.  Those in The Arc do not know this information.  DRW does not know this information. Community Residential Service Association does not know this information.

 It has been shared with all of these organizations but they will not acknowledge the information because it does not support their agenda.

I can say that I have appreciated conversations which I have had with Sue Elliott, Executive Director of The Arc of Washington.  She has been candid and has indicated that yes, I am correct in stating that for those with high support needs the cost of care would be more expensive in community settings.  The Arc, though, believes that no one should live in any congregate care and that is what they advocate for.  It is fine to advocate for no congregate care but in so doing one also has to use accurate data and say that they do not agree with congregate care but it will cost more.  They are not doing that – they are giving false information to support their advocacy.  This is very detrimental to ALL with ID.

Please, I welcome questions and concerns.  I would appreciate feedback and will get back to you.  I have researched much of this data and have the public records and citations of all resources.

Please share with those who may need to know or understand this information or have them contact me.  I would be very happy help anyone understand the complexities of caring for a person with ID who has very high support needs.