Category Archives: Disability Rights Washington (DRW)

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

 

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

Incapacitated person

courtsb

My son has been found to be an incapacitated person according to law in the Superior court of the State of Washington.  This was recommended by a court appointed guardian ad litem.

By definition of his disability and his functional abilities, my son is not able to make safe choices and by court order is unable to make those choices.  He is unable to vote.

Why, when the court recognizes that my son, and many with similar issues, is incapacitated  are there “advocates” saying that he has the right to choose?  In my opinion they are telling me that my son is worthless and not important.  The are advocating for negligence.   They have no clue what his functional level is and their total disregard for his quality of life, his worth as a person are ignored.  My son and others deserve human dignity and respect just like everyone else.  He deserves safe, quality care.  He deserves the right to be free from harm.  The Superior Court has recognized this fact and the fact that he is unable to make these choices himself and to keep himself safe.   These are the choices that I make for him because he is unable to make those choices himself.  Certainly, those who have no idea what his experience is can make these decisions better than I can or better than those who know him can.

The court realized that my son and others are unable to make safe decisions and the court has taken steps to ensure there is a person who will make those decisions on behalf of those who are, by definition of their very disability, have a less developed capacity for abstract thinking and less developed level of verbal and linguistic capabilities.  This makes them dependent on their parents/guardians to represent them.(Anna Barelds, 2009)

To assume he is suddenly able to make choices which may affect his safety is negligence.

My goal is to keep my son safe and healthy.  My son has no clue about how to keep healthy and if he did he doses not have the functional ability to manage his basic safety.  Why are there people telling me and policy makers that people like my son are now miraculously able to make their own choices and to live independently?  My son and many others live in supportive communities – communities which are safe and offer stable, quality and sustainable care.

“It is the intent of the legislature to protect the liberty and autonomy of all people of this state and to enable them to exercise their rights under the law to the maximum extent, consistent with the capacity of each person. The legislature recognizes that people with incapacities have unique abilities and needs, and that some people with incapacities cannot exercise their rights or provide for their basic needs without the help of a guardian. However, their liberty and autonomy should be restricted through the guardianship process only to the minimum extent necessary to adequately provide for their own health or safety, or to adequately manage their financial affairs.” RCW 11.88.005. (Washington State Superior Court Guardianship Forms)

NOTICE OF LOSS OF VOTING RIGHTS
(Proposed SCOMIS Code: NTLVR)

“On _____________________, this matter came before the court. Pursuant to Laws of
Washington RCW 11.88.010, it has been determined that the individual named in this
notice lacks the capacity to understand the nature and effect of voting such that she or
he cannot make an individual choice and should not retain the right to vote.
Accordingly, the court has appointed a guardian and has revoked the right to vote.”

(Washington State Superior Court Guardianship Forms)

Anna Barelds, I. v. (2009). Quality of care and service trajectories for people with intellecftual disabilities: defining the aspects of quality from the client’s perspective. Scandinavian Journal of Caring Sciences, 24, 164-174.

Rhetoric and Hearsay are not Facts

One often hears the same “facts” over and over and then wonder why things do not improve or change.  The reason is because they are not the facts – only hearsay, wishful thinking and rhetoric.

People do not want the facts – as Senator Adam Kline states “when one is uncomfortable with the facts, one ignores them.”  This is often the case with Senator Kline when facts are provided to him.  Senator Kline is not the only one who ignores facts – there are other advocates who state they see no benefit in looking at the facts – the facts that do not agree with their wishful thinking.

Maybe the only way to get the facts to the public and the legislature is to encourage our Senators and Representatives to request Washington State Institute of Public Policy (WSIPP)  to research the issues.  The Institute’s mission is to carry out practical, non-partisan research—at legislative direction—on issues of importance to Washington State.

I have contacted WSIPP regarding the report

CHILDREN AND ADULTS WITH DEVELOPMENTAL DISABILITIES:
SERVICES IN WASHINGTON, RESEARCH EVIDENCE

with new information and issues concerning our citizens with developmental disabilities.  The lead author of that report wrote “

“You raise some very interesting points, particularly regarding cost-shifting and other impacts of services for individuals with developmental disabilities on the individuals’ families and communities. If we were to receive another research assignment in this area, we would use your suggestions to shape our work plan.”

The first thing I would ask is that WSIPP look at the report

Assessment Findings for Persons with Developmental Disabilities Served
in Residential Habilitation Centers
and Community Settings

which is regularly referred to regarding issues of support needs and acuity of people with DD.

That data clearly indicated that those in the RHC had significantly higher support needs overall than those who lived in the other two community settings.  Yet, the data did not support the hypothesis which DDD desired and therefore, the author chose to combine the two populations which were to be compared into one population.  The final conclusions and key findings only referred to two types of residences: 1. ) RHC and community residential settings and 2.) other community-based settings.  This manipulation of results greatly affected the interpretation of some excellent data and has been used inappropriately.

This chart has the actual data and the 3 populations depicted.  It is clear from this graph and also the report “An extremely large percentage of clients living in RHCs have high acuity levels (and therefore elevated or urgent need) for protective supervision (95.3 percent) and interpersonal support (86.3 percent), and almost three fourths have high acuity levels for activities of daily living (73.6 percent).” These are the areas which are the highest predictors of out-of-home placement needs.

interpersonal and protective supervisoin chart

“Clients in RHCs and community residential programs were more likely than those in other community-based settings to be categorized as “high acuity” based on their DDD acuity scale scores in terms of activities of daily living, interpersonal support and protective supervision needs. RHC clients were also more likely to have high acuity scores on medical, mobility and behavioral measures than those supported in the community”

real data for RDA

“Support needs are higher in most general life tasks, such as daily and community living activities, for DDD clients served in RHCs and community residential settings than for those supported in other community-based settings.” (italics by this author which indicate the combination of two populations which were to be compared)

manipulated data

One last graph to indicate the inaccurate information on costs – looking at this it makes sense why we have continued crisis and lack of care and services.

cost discrepancy

It’s time to take the big step and face those “uncomfortable” facts.  These are the facts that will help change things around and improve services.  It’s time for people to be informed!

For bibliography and references see the Legislative page of this blog

Alarming? Really?

 

 

Prevent abuse of people with developmental disabilities was the Op-Ed piece in The Seattle Times yesterday written by Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council.  The issues brought forth are not new and I’m wondering why these agencies have not been continually advocating for safe and appropriate care, oversight and investigations all along?  It was clearly evident from the Op-Ed piece Supporting our most vulnerable citizens published in 1999 by these same two authors that these issues were of great concern.  What happened in the past 13 years between these two essays to improve the situation?  Apparently nothing – so what are these agencies advocating for and what is their purpose?

My belief is that these agencies have been led down a misguided path – rather than looking at the person who they are supposedly advocating for they have been advocating for those who gain financially from social experimentations of rapid deinstitutionalization without evidence based studies that this is the best option for some of our most vulnerable citizens.  There seems to be a rule that the data which DSHS and DDD share with these agencies is golden even though it may not make sense.  But because the data supports the agenda of these agencies which are backed by their supporters who will gain financially from this misguided advocacy,   it is used as fact and this is what our policy makers are given to use for legislative purposes.

In my attempts to ask these advocates and other decision makers in our state about the questionable conclusions I have been told may several of the executive directors of Arc chapters in our state that they do not question the information which DDD gives them, they do not ask questions about the sources, they assume the data is correct.

Recently, when I asked to meet with the statewide coordinator of the parent coalitions run by The Arc of King County,  he wrote he had seen my questions and data but did not want to address them.

All I can think is that these people just put their head in the sand and do not want to face reality.  They need to look at the questions asked and answer them, look at the glaring discrepancies and address them – they need to be accountable for their actions and inaction in their advocacy and not blame the legislature.  They are the ones giving the legislature the information and if they give the legislature garbage they will get garbage.

My concern is that many vulnerable people are being hurt by these who claim they care.

 

 

Cultivating Dreams

The Power of a Mom’s Love  is an Op-Ed piece in The New York Times about a mom who has been tireless in her efforts to provide for her son.  She has started a program called “Cultivating Dreams” which will offer people with special needs a community of their own.  This will be much like an “assisted living” community for the elderly.  The community residents will live freely but also work in the community – in a bakery, in the garden  or other jobs which suit the residents.

I love this idea but I’m concerned about it too.  Concerned because we already have many  supportive communities (state operated) which are being shut down, one by one, across this nation, with the Department of Justice and “so-called” advocates such as The Arc and all it’s subsidiaries  saying these supportive communities are isolating, segregated and expensive.  None of these adjectives describe the supportive community which my son lives in but the “so-called” advocates do not listen to the families of the people who call these communities their homes.

Historically, it has been the changing philosophies of professionals and state agencies which have influenced  decisions on how best to serve individuals with disabilities.  Despite reports by professionals, program planners and “advocate” groups which embrace the  increasingly accepted goal of deinstitutionalization, the families and caregivers of the individuals involved have different opinions.  Yet despite the move towards self-advocacy, the parents and caregivers of this population are not heard.

The person who can not speak up for themselves as a self advocate needs people who know them well to help advocate for them.  These family members and caregivers are ignored though – which means the population which can not speak or advocate for themselves is ignored.  Who listens to the people who know this population best, who care for them, who know  best how to support them?  Apparently no one does and this population is left at the mercy of professionals, program planners and “so-called advocates” – to make decisions.  This is WRONG!

One can see an example of this in a recent assessment (2010) done by the Division of Developmental Disabilities of all residents in the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) in Washington State.  This assessment was the same assessment which was done for all DDD clients on the Home and Community Based Service waivers.  The findings were utilized in determining the closure of one of the communities  surveyed.  Evidently, the choices of the families involved did not matter.

 

Resident's choice

In addition to the assessment above, every year the family/guardian needs to sign a consent and is asked specifically about desires to move.  It is clearly indicated that residence is strictly voluntary and the guardian could chose at any time to remove the resident from the ICF/ID which would not jeopardize the resident for eligibility with services from DDD.

From this, it is very clear that these families are choosing this supportive community – maybe it would be wise to listen to them and find out why they prefer it.  Maybe the professionals, program planners, and advocates would learn something.

So, getting back to “Cultivating Dreams” – I’m very glad to see this concept heralded as a good choice for our children.  I hope the dream is realized.

 

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)

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?)

Doesn’t My Voice count? Let me decide what my community is!

My son Thomas lives in his chosen community. Living in his community enables him to engage in one of the few activities that he can do independently.    Using his savant memory for people’s names together with  his naturally exuberant personality and insatiable desire for talking with people, he greats every person he sees by name and calls out “hi (whoever he sees)” at the top of his lungs and jumps with joy whenever he sees someone coming or in the distance.  If he doesn’t know your name, you will be greeted with “what your name?” and “what country are you from?”  Don’t be fooled though – he will never forget!

Thomas lives at a Residential Habilitation Center (RHC) or Intermediate Care Facility for People with Intellectual Disabilities (ICF/ID or ICF/DD).  This is a campus community and one which suits him perfectly.

Below are some photos from his community:

Thomas’ Secret Garden – growing sunflowers and pumpkins here

Therapy Garden – Raised Beds – Thomas is growing herbs in his bed. He waters and tends to his plants here.

Open field next to the Healing Garden

FIrcrest Chapel nestled in the woods

Community members playing in the open field

Fircrest Healing Garden with wind chimes

Thomas running to the concert – excited about seeing Cowboy Buck and Elizabeth!

Below are some photos of some group homes in Seattle.  Group homes are wonderful for those whom the environment is appropriate but just because it is a group home does not mean that it is the least restrictive environment or a community.

Nice, well-kept group home but certainly not “community” or “least restrictive”

Another well-kept group home but is this “community?”

Community Home on busy arterial without fencing. Is this a safe community setting for a person who elopes?

 Please see this link for other issues with high traffic and group homes:  

Community Homes in High Traffic areas

I fully support a continuum of care and small, community group homes when that is the appropriate setting and truly the least restrictive environment for the individual.  What I am trying to illustrate here is the fact that just because a group home is situated in  a “neighborhood” does not mean that it is less restrictive, more community oriented or more appropriate for the person.  One needs to look at the individual and as both the US DD Act and the 1999 US Supreme Court Decision Olmstead state, the individual together with their family/guardian should be able to make the CHOICE.