Why the confusion, King 5?

We often hear varying opinions about what the cost of care for people with intellectual disabilities really is.  This  should not be so difficult to figure out given that there are resources upon resources to use.  For some reason though, several of the resources which could give us the best information are not used.  This makes no sense to me unless the goal is to keep the public and legislators confused and to keep pretending that there is no real way to make a comparison of cost for community and institutional care.

In the most recent airing of “Last of the Institutions” by investigative reporter Susannah Frame of King 5 News, she did refer to the cost of care for one young man with high support needs.  He lives in a home supported by Alpha Supported Living.  Ms. Frame also interviewed Scott Livengood, CEO of Alpha Supported Living and referenced the “average” cost of care for those in dispersed community housing.  This young man’s daily care cost is $370.00 – far higher than the “average” cost reported to legislators and the public.

Using this “average” cost is a tactic that is used to hide the truth of the issue.  Those in DDA and the agencies know full well what the cost of care of each individual in a community setting is.  Each agency has negotiated with DDA the exact number of hours and supports that each of their clients will need.  It is no mystery.  Pretending that those with high support needs can be cared for at the “average” cost is nothing but a lie.

For instance, a couple of years ago I was given the daily rates for the cost of care of the 30 residents with the highest support needs and cost.  The daily range was $497 to $969 with an average direct care cost of $598.  If there was an “average” to use for the cost of care for residents in the shared community if they were to move to dispersed housing, this would be the average to use.  See this link for the chart with the costs and the support needs assessments of these clients. Highest 30 Residential Clients by Cost and acuity

I spoke with Russ Walker, Executive Producer for King 5 Investigators.  I brought up the issue of the dispersed community costs not including medical, dental, nursing care, prescription medications, and food – just to highlight a few cost centers.  Mr. Walker assured me that the costs did include these and they knew since Mr. Livengood had showed them the accounting for Alpha Supported Living. It’s interesting to note that the Certified Cost Report for Alpha Supported Living does not include these costs.  Certified Cost Report for Alpha Supported Living 2014

When looking at the actual data,  the calculations and cost accounts are very different than what is provided to our legislators and public.  When I have presented these differences to some legislators, Disability Rights Washington, the Developmental Disabilities Council and The Arc Chapters – the common response is refusal to communicate.    They have not been able to prove me wrong even when given the opportunity to do so.  I believe this means they are not able to prove me wrong.

Take a look for yourself and decide – what costs are missing from the community support side of the equation?  Do the costs add up as equal in your judgement and calculations?   Click the link for a table of the daily cost per resident.

Shared Community RHC and Alpha Supported Living Cost Comparison

I am using Alpha Supported Living as the example since this is the agency that Susannah Frame used in her investigation.  Alpha Supported Living is one of the better agencies yet the reimbursement from the state barely covers the cost.  Alpha has major fundraising campaigns to raise money to provide quality services to their residents.

Alpha Supported Living 990 2014

DDA Account Descriptions

It’s not Scientific Research – part 2

The Policy Report that Susanna Frame refers to as “scientific research” is not scientific research but a literature review looking at one aspect of life. The Policy Brief she shares is not a scientific research and the authors note that for those with severe intellectual disabilities with complex support needs there has been a huge gap in the research.

Promoting choice and person centered supports comes with an added responsibility to ensure that individuals and families are given the opportunity to have accurate information about the many complexities involved with their care.

While the deinstitutionalization movement started with great intentions – this movement has gotten out of hand without a grip on the reality of the situation.

Wolf Wolfensberger (1934-2011) was instrumental in the formulation of the concept of personal value and meaningful integration and inclusion of people with intellectual disabilities.

“Wolfensberger (2003) has indicated that the advent of the ideologies of radical individualism coupled with radical self-determination and the derivative constructs of ‘choice’, self-advocacy and empowerment has resulted in many people with ID being turned loose without any, or without sufficient, supports, guidance, tutelage or outright controls.  Wolfensberger singles out for particular criticism the kind of assertiveness training promoted by People First and other collective advocacy groups. “(Jackson, 2011)

There are several groups that are supported by public funds that partake in this radical advocacy movement.  They refuse to collaborate with others who are more holistic, take a strident tone and alienate those who may question their tactics or ideology.   The Arc, SAW (Self-Advocates Washington), SAIL (Self Advocates in Leadership), Parent to Parent, Washington State Parent Coalitions for Developmental Disabilities are several of these organizations which have become wedded to this radical agenda of black/white choices.

These groups are working with for-profit vendors to polarize advocates to “community” or “institutionalization” to the complete exclusion of true choice and alternatives.  The politicization of the research agenda which is dictated by external bodies is doing our citizens a great disservice.

This so-called “investigation” by Susannah Frame from King 5 plays right into this agenda.  It has been clear from the start of the biases and lack of research and facts.  The complexities of the issues have not been addressed nor has there been any information given as to why advocates may not agree with the “choice” that they are told is the “right” choice.   Many question the credibility and ethics of the authors of the reports and the so-called “scientific” research.

While it seems that community cost is less by the limited data that is provided, it is not really about cost – nor is it really about choice – it is about something else – it’s about an ideology that is going to lead to disaster if no one is allowed to question it.

Paradoxically, instead of being genuinely enabling, empowering and liberalizing, ideology is being deployed to support policies which benefit the for-profit vendors.  This is big business and many community vendors are making a large profit from the care of vulnerable people.

Scott Livengood, CEO of Alpha Supported Living, would be able to tell you that his company cannot accommodate many residents with the high support needs of Yusuf – the young man portrayed in the recent segment.

Alpha Supported Living does a great job of supporting Yusef and others but some of these agencies are not so well staffed or managed well.   Records indicate that Yusef’s daily personal care comes to about $370.00 a day – yes that is less expensive than the daily care rate at the RHC but what is missing from this information is the cost of all the other aspects of care – food, shelter, health care, transportation – just to highlight a few costs that can add up rather quickly.

Any Supported Living Provider will say that they cannot afford to care for people with this level of care with the low rate of reimbursement that they receive from our state.  The funding for this care comes from the Home and Community Based Service Waiver (HCBS) and each state has a different program for funding.

While it has been stated that Washington is decades behind – the facts show otherwise.  There are 12 states that do not have any large State-Operated ICFs but that does not mean that they do no not have private ICFs or nursing homes or utilize those services from an ICF in another state.  In order to move people from the ICF to a dispersed community setting, it would be critical to know what the resources are in the community and if there is funding available to provide the specialized services and to sustain them.

The chart below has data taken from The State of the States (the same resource that Susannah Frame used for her information).  One can see that every state has some residents in an ICF/ID or nursing home.  It is also important to note the HCBS per capita spending for those who live in dispersed community settings.  The states with fewer people in larger facilities spend much more per capita on the HCBS waivers.

Washington, with a HCBS cost of $87.00 is below the national average of $129.00.  Those states with no large state-operated facilities spend an average of $175.00 per capita on HCBS waivers.  This care also comes with a cost. It needs to be noted that the HCBS costs do not include cost of living expenses such as rent, food, medical care which are all included in the ICF/ID costs.

If this was all about cost we would not be having these discussions.

Data taken from “The State of the States in Developmental Disabilities” Fiscal Year 2013 and Centers for Medicaid and Medicare Home and Community Based Spending FY 2013

Graph sorted by percent of ID residents in /ID and Nursing Facilities

HCBS spending per capita and ID residents 2013

 

Graph sorted by State spending on HCBS waivers FY 2013

HCBS spending with ID Residents

 

King 5 “Last of the Institutions” Part 4

 

Resources used:

 

Ailey, Sarah H., et al. “Factors related to complications among adult patients with intellectual disabilities hospitalized at an academic medical center.” Intellectual And Developmental Disabilities 53, no. 2 (April 2015): 114-119.

Arnold, Samuel R. C., Vivienne C. Riches, and Roger J. Stancliffe. 2014. “I-CAN: The Classification and Prediction of Support Needs.” Journal Of Applied Research In Intellectual Disabilities 27, no. 2: 97.

Bershadsky, Julie, Sarah Taub, Joshua Engler, Charles R. Moseley, K. Charlie Lakin, Roger J. Stancliffe, Sheryl Larson, Renata Ticha, Caitlin Bailey, and Valerie Bradley. 2012. “Place of Residence and Preventive Health Care for Intellectual and Developmental Disabilities Services Recipients in 20 States.” Public Health Reports 127, no. 5: 475-485

Bigby, Christine. “Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community.” Journal Of Intellectual & Developmental Disability 33, no. 2 (June 2008): 148-157.

Centers for Medicaid and Medicare, 2015. Medicaid Expenditures for Long-Term Services and Supports (LTSS) in FY 2013: Home and Community-Based Services were a Majority of LTSS Spending June 30, 2015, s.l.: Centers for Medicaid and Medicare.

Cooper, Sally-Ann, et al. “Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis.” BMC Family Practice 16, no. 1 (August 2015): 1.

Erickson S, LeRoy B. Health literacy and medication administration performance by caregivers of adults with developmental disabilities. Journal Of The American Pharmacists Association: Japha [serial online]. March 2015;55(2):169

Felce, David. “Costs, Quality And Staffing In Services For People With Severe Learning Disabilities.” Journal Of Mental Health 3.4 (1994): 495-506.

Friedman, Carli, Amie Lulinski, and Mary C. Rizzolo. “Mental/behavioral health services: Medicaid home and community-based services 1915(c) waiver allocation for people with intellectual and developmental disabilities.” Intellectual And Developmental Disabilities 53, no. 4 (August 2015): 257-270.

Hamden, AnnNewton, RichardMcCauley-Elsom, KayCross, Wendy. “Is Deinstitutionalization Working In Our Community?.” International Journal Of Mental Health Nursing 20.4 (2011): 274-283.

Hamelin, Jeffery P., et al. “Meta-Analysis Of Deinstitutionalisation Adaptive Behaviour Outcomes: Research And Clinical Implications.” Journal Of Intellectual And Developmental Disability 36.1 (2011): 61-72.

Hewitt, Amy. “Presidential Address, 2014—Embracing complexity: Community inclusion, participation, and citizenship.” Intellectual And Developmental Disabilities 52, no. 6 (December 2014): 475-495.

Jackson, R. “Invited review: Challenges of residential and community care: ‘the times they are a‐changin’.” Journal Of Intellectual Disability Research 55, no. 9 (September 2011): 933-944.

Kelly, Susan, and Yani Su. “Psychotropic and anticonvulsant medication: Individuals with intellectual and developmental disabilities who transitioned to the community from an institution.” Intellectual And Developmental Disabilities 53, no. 4 (August 2015): 289-300.

Lakin K, Prouty R, Polister B, Coucouvanis K. Data Briefs: Change in Residential Placements for Persons with Intellectual and Developmental Disabilities in the USA in the Last Two Decades. Journal Of Intellectual And Developmental Disability [serial online]. June 1, 2003;28(2):205-10.

Larson S, Lakin C, Hill S. Behavioral Outcomes of Moving From Institutional to Community Living for People With Intellectual and Developmental Disabilities: U.S. Studies From 1977 to 2010. Research & Practice For Persons With Severe Disabilities [serial online]. Winter2012 2012;37(4):235-246.

Luckasson, Ruth, and Robert L. Schalock. “Standards to guide the use of clinical judgment in the field of intellectual disability.” Intellectual And Developmental Disabilities 53, no. 3 (June 2015): 240-251.PsycINFO, EBSCOhost (accessed November 28, 2015).

Mansell, Jim, and Julie Beadle-Brown. “Deinstitutionalisation and community living: Position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities.” Journal Of Intellectual Disability Research 54, no. 2 (February 2010): 104-112

Martinez-Leal, R., et al. “The Impact Of Living Arrangements And Deinstitutionalisation In The Health Status Of Persons With Intellectual Disability In Europe.” Journal Of Intellectual Disability Research 55.9 (2011): 858-872

Nøttestad, Jim Aa., and O. M. Linaker. “Psychotropic Drug Use Among People With Intellectual Disability Before And After Deinstitutionalization.” Journal Of Intellectual Disability Research 47.6 (2003): 464-471.  2015.

Snell, Martha E., et al. “Characteristics and needs of people with intellectual disability who have higher IQs.” Intellectual And Developmental Disabilities 47, no. 3 (June 2009): 220-233.

Stancliffe, Roger J, Eric Emerson, and K Charlie Lakin. “Community living and people with intellectual disability: Introduction to Part I.” Journal Of Intellectual & Developmental Disability 25, no. 4 (December 2000): 1-4.

Stancliffe, Roger J, and Sian Keane. “Outcomes And Costs Of Community Living: A Matched Comparison Of Group Homes And Semi-Independent Living.” Journal Of Intellectual & Developmental Disability25.4 (2000): 281-305.

Swenson S, Lakin C. A wicked problem: Can governments be fair to families living with disabilities?. Family Relations: An Interdisciplinary Journal Of Applied Family Studies [serial online]. February 2014;63(1):185-191

Ticha R, Hewitt A, Nord D, Larson S. System and Individual Outcomes and Their Predictors in Services and Support for People With IDD. Intellectual And Developmental Disabilities [serial on the Internet]. (2013), [cited November 27, 2015]; 51(5): 298-315.

It’s not science!

This post will provide some additional information to help clarify some of the mis-information that is being reported by Susannah Frame in her “Last of the Institutions” series on King 5 in Seattle, WA

  • The reports referenced by Susannah Frame are not “scientific research” but social research with many variables that cannot be generalized. The Policy Brief she shares is not a scientific research and the authors note that for those with severe ID with complex support needs, there has been a huge gap in the research.

From Charlie Lakin Research Article: (Susannah refers him as one of the countries foremost researchers)
“The higher level of support needed by people with more severe disabilities provides a greater challenge in assisting them to live in personal housing. The per-person cost of providing paid supports is one important such challenge.”


“They concluded that no economies of scale could be established in the existing research, except in very small residential settings, in which the decreased number of people in the home necessitated an increased staffing ratio. The critical point is reached at which there is a need for one staff member at all times, so that if the number of people in the home further decreased, the ratio of staff to residents necessarily increases. Unless nonpaid or differently paid supports are introduced, the per-person cost of support increases. ‘‘Such diseconomies of very small scale apply only in residential services when the service model or the residents’ support needs require continuous paid staff presence’’ [Lakin and Stancliffe, 2005, p. 324]. This is most often the case for persons with severe disabilities.


Lakin, K., & Roger, S. (2007). Residential Supports for Persons with Intellectual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research News, 151-159.

  • Susanna Frame reports that Washington is decades behind other states yet the most recent data (which she has also looked at and referenced) shows a different story:This is what Susannah Frame says” Washington state has a larger population of developmentally disabled adults living in state-run institutions than nearly every other state in the union.” Look at the data – I don’t see how Susannah Frame came to her conclusion – someone must have just told her that and she believed it.

    Data taken from “The State of the States in Developmental Disabilities” Fiscal Year 2013
    http://www.stateofthestates.org/…/intell…/state-profiles

Percent of IDD in state ICF ID and Nursing facilitiesPercent of IDD in private ICF ID and other facilities

Scott Livengood, CEO of the supported living agency Alpha Supported Living, weighs in with his comments about the cost of care.  Mr. Livengood knows full well what the cost of care for people with complex, high support needs are.  His agency needs to negotiate with DDA for hours to ensure that the residents have the support needs.  He also knows that those with higher support needs require more personal care and their care is more expensive.

I do not understand the extreme reaction that Mr. Livengood had with regards to maintaining safe building structures for those at the RHC.  One of the reasons that the costs are so high now is that the state has allowed the buildings to dilapidate and go into dis-repair.  Is it wrong to provide safe living conditions?  It is time that some efforts were put forth to maintain the residences.

And just like union workers at the RHC who have jobs and make a meager living, Mr. Livengood’s job is also tied to caring for this population.  One major difference is he has a hefty salary with annual bonuses and has had raises of 12 and 10 percent in the years 2012 and 2013.  His 2013 reported base salary (IRS Form 990) was $248,950 with bonuses and benefits bringing his full earnings to over $290,000.

This post refers to the King 5 Series “Last of the Institutions

 

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

Prove Me Wrong

Being fairly new to advocacy work, I imagine that I started to ask questions that had not been asked by those who have been around for awhile.   There have been many assumptions that have been looked at as facts and from what I can tell NO ONE has questioned the Division of Developmental Disabilities  (DDD) and The Department of Social and Health Services (DSHS)  regarding the accuracy and completeness of the reports and data that they give for advocates and legislators to work with.

Given the data that has been available, (which as been incomplete and inaccurate when compared to original sources) many poor decisions have been made.  I really do not understand why an agency that is granted the responsiblity to protect our most vulnerable is utilizing inaccurate information which will be used for policies which would then cause harm to that very population.  Can someone explain this to me?

Also,  when I have contacted many of the advocacy groups about this I have only heard that they only take the information that is given to them and assume it is correct without checking into the actual data.  Why wouldn’t anyone question where the data came from?

Most recently I have applied to join the Community Advocacy Coalition,  (CAC) a coalition made up of organizations which advocate for our citizens with developmental disabilities.  Scott Livengood, chair of this coalition informed me the of the admission criteria:

1. Be a organization with a 501 c(3) status, a licensed business or a public organization, and

2.  Sign the Letter of Agreement and support the Core Values

The admission form and Core Value statement are all very good with the exception of the last paragraph.  I filled it all out and wrote to Mr. Livengood that I was an advocate for a continuum of care and that as a business owner and advocate I could not sign the agreement as it was but offered my edits to which I could fully agree.  He wrote that he would take it to the membership  to discuss and get back to me.

Today I heard that my membership was denied.  I’m not surprised because I am aware that the CAC really does not live up to it’s own core values and that a large percentage of the member “organizations” do not meet the criteria in #1 above.   In addition, from being able to attend one meeting and reading minutes from other meetings it is clear the motive of the CAC is to close congregate care facilities to promote profits to the vendors.

I had offered to make a presentation to CAC with information regarding the data which I have researched  would be fully prepared to defend the information.  They did not take me up on the offer.  From the denial of my admission and lack of interest in having a presentation regarding critical information which they are lacking, I have come to the conclusion that the purpose of the CAC is to consolidate and close congregate care, deny services to those who need the high support need services that would be available to them in a continuum of care model and to accept negligence and crisis as the standard of care for our citizens with intellectual disabilities.

This is totally unacceptable and particularly so when CAC states values such as:

“Nothing about us without us”

“Provides a platform for advocacy organizations to share information, educate one another on issues of mutual concern ”

“Our many voices join in unison for one common vision”

That is fine that they will not accept the letter of agreement with the edits which I provided but then to not even take me up on the offer to share information, educate the group on missing data and give them the chance to ask me questions and to hear the defense of the data is further denial of information to those who critically need it in order to make informed decisions.  These actions do not uphold their core values at all.

Again, I am not surprised by the denial of admission since it is the consistent with the censorship against the information which I try to share and the banning of comments and postings from me on any of the sites which are part of The Arc monopoly on DD advocacy.  It is due to this monopoly that more thorough and accurate data and information is not known since the monopoly will not allow it to be publicized and distributed.  This is a very sad state of affairs and one which only adds to the crisis that they supposedly state they are trying to correct.

Without accurate data the crisis will continue to escalate and those who support a continuum of care will continue to be the scapegoat for this while the vendors make profits = profits that could very well be used to provide more services and supports to those in critical need.

 

 

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.

Will Negligence become the new standard of care?

 

This chart illustrates the comparison of the cost of care for similar clients who have high support care needs of 24 hours/day.  By continuing to be misled by many who claim that they can better serve these residents in the community and at a lower cost, they have no data to support that claim.  The reason is because it is impossible.

To move these clients (who do not want to be moved anyhow) to a different environment assuming that thier care cost would go down is a form of abuse and neglect.  Is this a choice which you would choose for your loved one?  I would hope not.  It’s certainly not a choice that I will choose.

What is happening though is that we are not given the choice – this “choice” is being made for us and our loved ones by those who do not have a clue about how demanding it is to care for some of these residents.  They base their information on caring for those with much lower support care needs.

When taking a look at the chart below, you can see the average support care needs which each agency reports.  Why are the advocates who care for residents with much lower support care needs able to manipulate our legislators and citizens into believing that they also know what is best for and how best to care for our residents with the higher support care needs?  This is ludicrous.

 

 

It is time that the advocates who say they are advocating for those with developmental and intellectual disabilities not only listen to people who care for those with high support needs but also re-read the US DD Act and the 1999 US Supreme Court Decision of Olmstead to understand that by continuing on the path of advocacy which they are on does not only cause more crisis and loss of services, it does not uphold the decision of Olmstead or the US DD Act.

It’s time that the family members, community members and caregivers of those with the highest support needs are allowed to be included in Stakeholder discussions and decisions.  What happened to “nothing about us without us” – does it not apply to these folks?

 

2011 cost of care charts  Please read this report for data, citations and more information