Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –

Seattle Times Editorial – DD Waiting lists

I like to think that if the validity of a report is questioned, the responsible thing to do would be to check it out.  Not so with the Seattle Times with regards to a recent editorial “End waiting list for people with developmental disabilities“.

Yes, it is absolutely true that we need to end the waiting list for supports and services and for this I believe every advocate for people with developmental disabilities is thankful, but what the Seattle Times and other so-called advocates continue to talk about is the inequity of services and supports.  The “haves and have nots” as the recent DD Audit termed the problem.

I’m sorry that the Seattle Times editorial staff will not look at this issue and the concerns that have been raised regarding the validity of the DD Audit.  Our state should not base any legislation or policies on data which was reported in the recent state performance audit of the Developmental Disabilities Administration.

I submitted an essay to the Seattle Times regarding this issue but they have declined it.  I am publishing here in hopes that the citizens of our state read this and understand the problems and misleading and downright false information which has been reported.  We can not just accept without questioning – particularly when some major errors have been identified and pointed out.

In response to the recent editorial from February 9, 2014 entitled “End Waiting List for People with Disabilities”:

I fully support expanding community services for those with developmental disabilities and their families.  However, it is wrong to argue that the lack of services, supports, and funds for those in community settings is somehow due to the money spent on those living in the Residential Habilitation Centers (RHCs).  This “haves vs. have-nots” mentality has been propagated by supposed advocates for those with intellectual/developmental disabilities, and is based on misleading and biased research fostered by those with an agenda to close the RHCs, a move that would be disastrous for our most vulnerable citizens and entail not a savings but a much greater expenditure of funds.

Rather than seeking objective research, our State Auditor hired out-of-state “experts” who pride themselves on closing RHCs to manage the project team that provided the data for the Developmental Disabilities Administration (DDA) audit.  This has meant that the audit contains critical omissions, inaccurate data, and false assumptions, with dire implications for our system and those it serves.

What’s going on here is an extreme case of cost-shifting.  The RHCs are medical facilities providing full, comprehensive medical, nursing, pharmaceutical, psychiatric, therapeutic, vocational, recreational, and behavioral care in addition to daily staff helping with the activities of daily living for residents.  All of these services fall under the DDA budget.  Community support, on the other hand, entails individually utilizing programs and funds in an a-la-carte fashion from as many as seven programs under the Department of Social and Health Services (DSHS).

What is crucial to keep in mind is that a person with acute needs in a community setting draws on far more resources than what appears on the DDA budget.  They draw from DSHS Medical, Economic, and Mental Health programs, local and state budgets, emergency response teams, hospitals, clinics, therapeutic resources, and so forth.  All of these costs are ignored by the audit, which looks narrowly at the DDA budget alone.  Information on these costs is readily available through the Integrated Client Data Base, but the auditors chose not to look at it.  Had they looked, they would have seen that 35% of those on the DDA budget receive paid supports from at least three other DSHS programs.  Moreover, each residential agency is required to submit an annual certified cost report of its expenses, something again ignored by the DDA audit even though this data is crucial for understanding where the funds go and how they are utilized.  Finally, the DDA is even ignoring its own data.  Its cost of care figures show that the top thirty developmentally disabled clients in the community cost an average of $598 each per day, while the cost of the same level of care for those with similar needs is $248 per day in the RHCs.

Space does not permit me to note all the other flaws with this audit.  (For example, in assessing support needs, the auditors omitted four of the seven standard areas of assessment).  To sum up, the audit is little more than a hatchet job aimed at RHCs.  It ignores the information most pertinent to the actual costs of care inside and outside of RHCs, and manipulates what data it does use.  What we have here is a shell game, but its victims are not unwitting Seattle tourists on a Times Square vacation, but rather those who most direly need the services of the RHCs, and the citizens of our State who will be stuck with the bill for a “reform” that costs more but delivers less.

I do hope that The Seattle Times Editorial Staff will take time to read this information and re-think their support of such a false report.

Editorial board members are editorial page editor Kate Riley, , Ryan Blethen,  , , Jonathan Martin, Thanh Tan, William K. Blethen (emeritus) and Robert C. Blethen

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.

 

 

Autistic Man walks away from drunk caretaker

This story exemplifies some of my worst fears.

Answers sought after autistic man walks away from drunk caretaker.

I hate to take advantage of situations which have caused harm to others but in this case, I must point out that this is the very issue which I am trying to advocate against.  I have been trying to have the so-called DD Advocates (The Arc, Disability Rights Washington, the Washington State Developmental Disabilities Council, the Community Residential Service Associates and others) look at the facts more accurately.  They refuse.  Maybe more stories such as this will help open their eyes to what they are really advocating for with regards to our most vulnerable citizens with the highest support needs.  They are not advocating for safe, quality, cost effective care but for substandard and negligent care.  Rather than advocating for the vendors, it is time they really advocated for our citizens in need.

Here is my post to the KOMO News story:

As a healthcare provider, parent of a child with intense support needs and advocate for our most vulnerable citizens, this story more than sickens me. I am appalled at the care, lack of oversight and more that is reported in this story and am so thankful that this man was found and will hopefully now be cared for in a caring, safe, healthy and humane environment for him.

I’m so afraid that we will hear more and more about abuses such as this one. The Arc, Disability Rights Washington and even the Washington State Developmental Disabilities Council all oppose any type of congregate care for our most vulnerable citizens – stating that all citizens can be safely cared for in community settings for less cost. The only way to have it cost less than a congregate care community is to endorse negligent care such as this type of care.

With staffing turnover rates of up to 45% in these community settings, there is no stability or sustainability and I wonder about the level of training and lack of back up support for the staff and residents. To me, this situation is a time bomb ready to go off at any moment.

This is so unfortunate since the so-called DD advocates will not address the facts about support care levels and safe care. They support the vendors, such as Service Alternatives rather than our loved ones.

I support a continuum of care model – a model which is based on the assessed needs and choices of the person and their family/guardian. This model includes the Residential Habilitation Center (Fircrest, Yakima Valley School, Rainier School and Lakeland Village) through independent homes. It is the safest and most cost effective model to best serve ALL our citizens with intellectual disabilities.

Much of the factual information has been shared with these so-called DD advocates and legislators – but they do not want to address the facts. I do hope that publicizing these tragedies will serve some good in knocking some sense into those who make the policies. Much of the research regarding the facts of the issues can be found at www.becausewecare1.com.

It is our duty as a society to safely care for our most vulnerable. Yes, this is a hard job, I know, I’ve been there and I am SO thankful for the care that our son is finally able to have at Fircrest. He loves his home there, he loves his school (Shorecrest) and he is active in his community. Yes, it’s not perfect but it’s the best we can do and it is the safest and least restrictive environment for him and many others.

I do know there are some excellent community homes with excellent caregivers.  We need to support our caregivers – they are the backbone which provide stability and sustainability.

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.

Updates – DSHS and DDD need to Answer to the Citizens

 

I am writing to you as a plea to look at the data that I’m presenting and to realize that the information that The Department of Social and Health Services and The Division of Developmental Disabilities have presented has been very misleading in the information that they present.

 

This frustrates me to no end.

 

There are many advocates working extremely hard for our citizens with developmental disabilities and due to the inaccuracies of DDD, these advocates are basing much of their work on false information.  This has maybe not created the crisis but has certainly added to it and unless DDD begins to report the data more accurately and truthfully, this crisis will just continue.

 

DDD is inaccurately reporting the cost of care for high acuity residents when they move from the RHC into a supported living arrangement (see attachment for data).  There may be many issues related to this but whatever the issues are they are not benefitting anyone in our state but actually causing harm and it needs to be addressed.

 

  • We have already had one citizen who was transferred from Frances Haddon Morgan Center die.

 

  • Contrary to what Secretary Dreyfus may say, this was not an accident.  Yes, there are accidental deaths but when it is truly an accident are 2 staff people fired and 2 more forced into “resignation?”

 

  • We hear about how our state has successfully transferred people out of the RHCs in a smooth transition. 

 

  • I just learned yesterday that the remaining residents who had been at FHMC are only in temporary housing until the 3 houses that will be built for them are started and completed – when is that going to be?  I don’t consider moving people who do not transition well in the first place into temporary housing while their new home is being constructed a smooth, thought out transition.

 

  • I heard that Secretary Dreyfus toured Rainier School and “saw” many people who she didn’t think should be there. 

 

  • Looks can be very deceiving and basing this assessment of who belongs and who doesn’t by one quick walk through is far from being able to know which environment is best for that person.

 

  • Did Secretary Dreyfus do an assessment on these people and talk with their caregivers and learn their history before making her judgment about if they belonged there or not?  I really doubt it and for her to make a statement such as that indicates to me that she is in the wrong profession.

 

  • Another example is that Secretary Dreyfus told me personally when I questioned her about prohibiting youth under 21 from admission to an RHC and she “assured” me that parents will still have that choice – they can send their child “out of state.”  Is this the type of leadership we need in a program that is supposed to work to help our most vulnerable citizens and their families?

 

  • Please ask DDD where the results of all their Quality Assurance assessments are –
    • We hear about what is being done but there are no results.  Where are the crisis beds located and how do people access them?  We hear about the funds for these beds and the teams but we don’t hear about where they actually are or how they are functioning.  That’s because they don’t exist.

 

This is not a system that I consider “functioning well” – in fact, I see this system as a system that is hurting and harming the people who it is supposed to be helping.

 

Please join me in asking DDD these questions.  These are the questions that need to be asked and these are the questions that will help us to realize that what DDD has been doing has not been working and will be causing more crisis unless someone starts to ask them these questions and get truthful answers.

 

Please, I’m asking for not only our citizens with developmental disabilities but for our whole state.  The issue does not only affect those with DD but touches every single person in our state. 

 

I am angry and frustrated with the irresponsibility of our DSHS and DDD programs.  Many people’s lives are at stake and there are many, many people working tirelessly for these same people.  Without the support of the department which is supposedly there so assist them, these people are continually working against a very dysfunctional program.

 Resident Hours Per Day letter and Chart

 

Missing Costs on EMIS from DDD Reports  – look on this EMIS data from DDD and see what is missing from the reports that DDD publishes.

 

Please Ask About these Missing Costs

One response from a legislator

“The advocates for both RHCs and community residential care have challenged those studies for years.  I must rely on the objective analysis of my fiscal staff, and not get engaged in the debate between advocacy groups about whose numbers are right or what is wrong with the numbers presented by one group or another.

 

My main task at the moment is the impossible challenge of balancing our budget.  We have very capable fiscal staff who have culled through the volumes of studies and will provide us with recommendations.”

This response saddens me – for several reasons.  This is not an issue of one advocacy group against another – it’s a fact of the government agency misrepresenting data.  Maybe there is a fine fiscal staff but if they are not given the correct information, how can they analyze it?  Garbage In – Garbage Out.

I’m also upset because if one is really interested in balancing the budget, wouldn’t one assume that you would want to look at accurate financial data?  When it’s handed to you on a plate, all you have to do is look.  This legislator won’t even look.  I’m sorry but my opinion of her has plummeted.

I know there are some very responsible legislators who will look at this information and ask the important questions.  I hope that number is increasing.

 

 

Please Ask DSHS and DDD These Questions!

This letter was sent to all Washington State Legislators and many other advocates.  I do hope that these questions are asked and that answers are received.

 

december 1 letter to legislator and others

 

The Department of Social and Health Services and the Division of Developmental Disabilities NEED to answer these questions and more.  The data that they continually present to our legislators is flawed and incomplete and doesn’t tell the whole story as it needs to be told in order to make policy decisions.

 

This is who we need to ask questions of:

DSHS – Aging and Disability Services Administration Tree

Susan N. Dreyfus, Secretary

Department of Social &  Health Services

Susan.Dreyfus@dshs.wa.gov

 

Don Clintsman

Division of Developmental  Disabilities

Aging & Disability  Services Admin

donald.clintsman@dshs.wa.gov

 

 

Janet Adams

Office of Quality Assurance and Self Directed Services

adamsje@dshs.wa.gov