Category Archives: Reports and Publications

Pilot Program Promising

Comprehensive, coordinated and cost-effective care – this is not impossible!

Children’s Comprehensive Care Clinic is a pilot program in Texas which is showing promise.  In Washington, we could expand on this by utilizing the campus communities at the Residential Habilitation Centers to become “Comprehensive Care Clinics” for our citizens with developmental disabilities.  The report, Medical Care Task Force Jan 2002,  outlines a process to establish comprehensive, coordinated and cost-effective care.

When looking at cost of care for residents in the supportive communities or dispersed communities, some of the major costs that are not included in the dispersed community costs are medical, psychological, and therapeutic costs.  Removing these costs from the cost analysis does not mean they are free – it means they are not available or accessible or not provided.  Of the many, many studies that have been done this issue of not including medical costs is a problem.  What is interesting though is that the studies that have been conducted in the UK are more accurate – different funding and different agendas.  The UK studies have consistently found that dispersed community services are more expensive than institutional services.

Another interesting issue is “quality of care” and “quality of life”.  The Arc and other DD Advocates do not look at issues that are outside the personal outcome measures, such as choice and community involvement.  They are missing a huge part of “quality of care” issues by their narrow focus and do not realize that “quality of care” influences “quality of life”.

Quality of care (health and safety outcomes) can be measured objectively where as “quality of life” is more subjective.  We meed to include measurements of quality of care into our assessments and cost analysis.  Below are some examples of areas needing evaluation.

a..  access to comprehensive health care services (primary, psychiatric and dental care as well as ancillary services, including care coordination)
b.  rates and status of abuse/neglect reports and investigations (including victimization in the community)
c.  mortality review
d.  access and utilization of behavioral services and
e.  similar direct measures.

When people who require complex care from a variety of professional services receive all their care in a “medical home” model, such as the ICF/ID, dispersing these people  will make access to healthcare, therapies, nursing, recreation and more unavailable. It is well documented that people with ID have higher rates of chronic medical and psychiatric illness than the general population.   It is also well documented that people with ID have an increased incidence of medical illnesses and have need for comprehensive, coordinated medical services. (Kaye McGivney, 2008)  For the best care it is critical to maintain the same providers over time and to avoid disruption of services. (Kaye McGivney, 2008) No longer will services be accessible or able to be shared.    This means that either the cost of care will greatly increase or that the person will not receive care.

Research also shows that those with DD, when admitted to the hospital, stay longer than those without a developmental disability.  People with DD are also less likely to be discharged to their pre-hospitalization living arrangement due to the fact that the needed supports were not accessible.  This fact highlights the importance of having specialized residential centers (ICF/IDs) to help alleviate the cost of care, crisis care and hospitalizations.  Having such centers increases stability is cost effective and provides stability to the citizens.  (Haier Saied, 2003)

Developmental Disabilities are not only experienced by the person but by the family.  We need to look at not only individual quality of life but the families’ experience and quality of life too. (Colvin, 2006) It is critical to the health and safety of our most vulnerable citizens and  a responsibility of our communities and government to realize that we need supportive communities such as the ICF/ID to best care for some of our citizens in the most cost effective, stable, reliable and safe method.

To do otherwise, is negligent.

Works Cited

Colvin, A. D. (2006). Variables Influencing Family Members’ Decisions Regarding Continued Placement of Family Members with Mental Disabilties in One State Operated Institution.

Haider Saeed, H. O.-J. (2003). Length of Stay for Psychiatric Inpatient Services: A Comparison of Admissions of People with and without Developmental Disabilities. The Journal of Behavioral Health Services & Research, 30(4), 406-417.

Kaye McGinty, R. W. (2008). Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatric Quarterly, 193-203.

 

National Council on Disability – Toolkit for Disaster

The message below was forwarded by an advocate for a continuum of care.  These are the contacts for those in Washington State –  People from every state should write their representatives to ensure that our most vulnerable are treated fairly and with human dignity – not negligence.

PLEASE ACT NOW!  Please use this email to send a letter to the National Council on Disability   PublicComment@ncd.gov

National Council on Disability (NCD) is a federally funded organization advising the Administration on Disability Issues.  NCD has   launched an all – out attack on facility care (institutions).  They propose the closure of all facilities over 3 beds.  They have even created a Toolkit for community advocates to follow in order to affect closures. They refer to deinstitutionalization as “unfinished business”. To the best of my knowledge, we have never had a representative of this organization visit any of our RHCs.  These are the people advising President Obama and Congress regarding the supports & services needed for the most vulnerable. If this group cannot represent both sides of the care question (institutions and community) they should not receive federal funding.

With the above in mind, please write, fax, telephone or e-mail the NCD regarding their position on congregate care.  Tell them our loved ones, living at the RHCs, are unable to receive the supports & services they need other than in our facilities.  The quality assurance within the community must be brought up to the same standards required by Centers for Medicare & Medicaid.  All of this takes planning, time and money.  All are in short supply at this time.

NCD, the President and Congress must be told not all individuals can successfully live in the community.  Many have tried and failed OR the community has failed them. VOR has contacted NCD and the White House with its concerns and objections.  Now it is our turn.

The contact information for the NCD is: National Council for Disability, 1331 F Street NW, Suite 850, Washington, DC 20004; Telephone: 202-272-2022; Fax: 202-272-2004; E-mail: website – http://www.ncd.gov.  At ncd.gov website you can click on their e-mail contact on the lower left hand side.

The President & Congress are best contacted through e-mail, fax or telephone. The White House contacts are: www.whitehouse.gov or 202-456-1111.  The mailing address for the White House is 1600 Pennsylvania Avenue NW, Washington, DC 20500.  Our Congressional Delegation can be reached as follows:

Sen Patty Murray                                 202-224-2621/F-202-224-0238

Sen Maria Cantwell                              202-224-3441/F-202-228-0514

Rep Suzan DelBene -1st                      202-225-6311/F-202-226-1606

Rep Rick Larsen-2nd                           202-225-2605/F-202-225-4420

Rep Jaime Herrera Buetler-3rd         202-225-3536/F-202-225-3478

Rep Cathy McMorris Rodgers-4th    202-225-2006/F-202-225-3392

Rep Doc Hastings -5th                         202-225-5816/F-202-225-3251

Rep Derek Kilmer-6th                         202-225-3251

Rep Jim McDermott-7th                     202-225-3106/F-202-225-6197

Rep Dave Reichert-8th                       202-225-7761/F-202-225-4282

Rep Adam Smith-9th                           202-225-8901/F-202-225-5893

Rep Denny Heck-10th                         202-225-9740/F-202-225-0129

Website addresses are also a link for contact.  Senators (last name.senate.gov); Representatives (lastname.house.gov)

Please send them your thoughts about the need for facility care as part of the continuum of care – the Safety Net – for our most vulnerable.

SAVE THIS PAGE FOR REFERENCE

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

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.

 

 

Deinstitutionalization – a National Disgrace

Did you know that if a person has a developmental or intellectual disability they can have all the other diseases, illnesses and conditions that everyone else has?  I know this seems like common sense but at times I do not think that the Division of Developmental Disabilities  (DDD) understands this.  When it comes to the dual diagnosis of Intellectual Disability/Developmental Disability (ID/DD), as a cost saving measure for the DD Silo, DDD is booting out clients with DD who happen to have a mental illness.  DDD states that the problems are caused by the mental illness and not DD!

There are problems with service delivery within the DD system but from what I read and see these problems are not nearly as bad as in the mental health system.  So, rather than caring for these extremely vulnerable citizens in at least one system, they are being sent to a system which is much worse, where they will surely die.  Where is the humanity in this?

Right now there is a gentleman who is fighting for services.  He is 30 years old and has a history of developmental disability, he has been served all his life through DD and had a HCBS waiver to move into a supported living arrangement.  We all know that transitions are difficult and this transition caused a crisis.  This man is currently in the state mental hospital in the wing for people with DD.

Can you believe that our state made him ineligible for DD services stating he has a mental illness?  This man had an assessment done in March 2012.  One week the family received a notice, based on this assessment, that he was eligible for the CORE Waiver and listed all the services he would be getting.  The next week DDD sent them a notice (based on the very same assessment which qualified him!) terminating all services.  Is this how our state treats those in crisis?  They take away the services?

This is just one example.  I am contacting many families and we will be putting together our own report on our experiences.  It will be shocking.

Guns and Mental Illness written by New York Times Op-Ed Columnist Joe Nocera, spells out some critical information.

“”Ultimately, the article I wrote was about how the “deinstitutionalization movement” of the 1960s and early 1970s — a movement prompted by the same liberal impulses that gave us civil rights and women’s rights — had become a national disgrace.”

and

“The state and federal rules around mental illness are built upon a delusion: that the sickest among us should always be in control of their own treatment, and that deinstitutionalization is the more humane route. That is not always the case.”

The risks of deinstitutionalization (in both the DD and the Mental Health systems) greatly outweigh the benefits – it’s time the program planners and policymakers realized this truth.

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.

 

State Ignoring Abuse in Group Homes

Article today in The Seattle Times highlights some of the issues which we are concerned about:

http://community.seattletimes.nwsource.com/reader_feedback/public/display.php?source_id=2019925424&source_name=mbase

I have written several times on just this issue.  Please see Throwaway People and previous posts regarding similar problems and concerns.

Unfortunately, it is not just our state which is lacking oversight of homes for people with intellectual and developmental disabilities (I/DD) – this is a problem which has gone unchecked for too long.  Too many people have been hurt, abused, killed because of this lack of oversight.  The overzealous efforts to “deinstitutionalize” have created another problem and it is time to look at this problem rather than continue to exacerbate it.  Let’s put the brakes on this disastrous experiment before more vulnerable people are hurt.

 

U.S. Department of Health and Human Services (HHS), Office of Inspector General (OIG) * June 27, 2012 
• Full HHS OIG Report
• Listen to Podcast / Summary of Report

• Read transcript of Podcast
Excerpts from Podcast:
“These [Home and Community-Based Services Waiver[ programs primarily serve the elderly and the disabled – people who are among Medicaid’s most vulnerable populations. And the very nature of the programs puts them at risk of receiving inadequate care. Most programs allow beneficiaries to be cared for by nonprofessionals without medical training.
“And, what’s more, beneficiaries receiving care in their homes are often alone and isolated from observers who might detect abuse or mistreatment. This is very different from the situation in nursing homes, where there are a lot of people who can detect and report potential abuse .
“Well, we went through the data that CMS collected, and we saw that CMS was aware of a lot of significant problems. CMS’s data showed that 7 of the 25 States we reviewed did not have adequate systems in place to ensure the quality of care.”

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?)