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.

 

 

“Throwaway People”

What happened to The Arc?

Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council (DDC) wrote about the issues very well in the years 1999, 2002 and 2005.  Please read about the advocacy for our “most vulnerable and politically powerless” and voiceless members of our communities. (Ed Holen and Sue Elliott Articles to Seattle Times)  The “Special to The Times” of 1999 highlights issues that have not changed in the 13 years since it was written.

The Arc used to advocate for people with developmental disabilities to have the same basic rights as everyone else – “the right to feel safe in our own home, the right to regular meals, the right to feel like a contributing member of society.”

When did this advocacy change to removing people from their safe homes in supported communities to become isolated?  When did it change to increasing the incidence of crisis oriented care by closing supportive community homes?  When did it change to not listening to the families and guardians of those who cannot speak?  When did it change to discriminate against our most vulnerable – the “Throwaway People?”

I want to know when the identified problems of ” inadequate staff training and compensation, no means of gauging the appropriateness of care, little oversight of such facilities, and no way to bar or punish those who abuse or take advantage of people with developmental disabilities” were corrected.

When were the suggested changes which The Arc and DDC sent to the Governor, the legislature and the Attorney General in 1999 implemented?

  • Allow family or relatives of individuals with developmental disabilities to take civil action in cases of wrongful death
  • Make hearsay evidence admissible involving cases of abuse and neglect of people with developmental disabilities
  • improve client to case-manager ratios (200 clients to one case-manager in 1999 – “the worst in the entire country”)
  • Require annual certification of all providers who receive contracts from DDD and DSHS
  • establish ongoing education requirements for direct-care providers
  • increase provider wages to reduce rampant and constant turnover

“The only way to ensure the basic right is to provide caregivers training and adequate compensation;  state regulators the authority to ensure quality supports and services;  and to call to account people who abuse the system and people within it.”

If you read the advocacy material printed and distributed from The Arc today what you will see at the top of almost any list is to close the supportive communities (Residential Habilitation Centers – RHCs).  This is in total contradiction of what they have written.  This means advocating to move people OUT of their safe homes and communities into isolated homes with little or no oversight, rapid turnover of poorly trained or inexperienced caregivers and adding to the crisis load of our community.

How did this happen?

Washington State Developmental Disabilities Council is out of compliance with Federal Regulations

According to the US DD Act , the state Developmental Disabilities Council membership must include at least ONE immediate relative or guardian of an individual with a developmental  disability who resides or previously resided in an institution or shall be an individual with a developmental disability who resides or previously resided in in an institution.   This is quite clear.

Washington State does not have a representative and I cannot find out when our state’s Developmental Disability Council had such a representative.  I have tried communication with Ed Holen, Executive Director of the DDC regarding this for over one year.  He cannot tell me who this person is.  Last year he told me it was a person who had already retired from the council and she was only a temporary and was not an immediate relative.  Since that time Mr. Holen has not answered emails or has evaded the question.  How hard would it be for him to give me the name of the person who holds this position?  All the names of the council members are public and are appointed by the Governor.

Now Mr, Holen wants to waste our taxpayers money and waste time by driving from Olympia to Seattle to meet with me to discuss this.  He will not communicate via email for such a simple request.

I am particularly disturbed by this lack of adherence to Federal Law due to the extreme bias against the population which needs the services and supports of the institutions.  Without representation at the table which is making policy decisions, how are these people’s voices going to be heard.

These actions (and lack of actions) on the part of the Developmental Disabilities Council is discrimination against our most vulnerable.  When will this end?

Washington State Developmental Disabilties Council

I am dismayed by the lack of unity and foresight that our state’s Developmental Disabilities Council is exhibiting.  I had thought that as a Federal-State Agency, they would be a the forefront of being an advocate for our citizens with developmental disabilities – in fact, it’s quit the opposite.

I had been warned by many of the council’s prejudice against anyone who advocated for a continuum of care.  Being optimistic, though, I thought that I would be able to talk to people and get them to see the truth of what was really happening.  I’m still optimistic but I have had a dose of their reality – meaning that the group is close minded and outright discriminates against our most vulnerable citizens who cannot speak for themselves.

I find this deplorable and irresponsible and I would urge this group to have a huge house-cleaning so that some new blood can help bring quality care and accessible, sustainable care to our citizens.  This group will not be able to reach that goal if they do not change their way of thinking.

They state that they have been recruiting new members – maybe they recruit but they do not ask people to join  – particularly people who may think differently.  I have applied, was not interviewed but did receive a letter from Governor Gregoire thanking me for my application but I was not selected.  My application must have been reviewed by the council though because this year, the vice chair (who I have never met or spoken with) wrote to me “Thank God you were not chosen to be on the council” along with some other choice comments and derogatory remarks.  Remarks that I also find irresponsible of the vice-chair of the state council.

While in a DDC meeting, there was an announcement that Frances Haddon Morgan Center would be closed by the end of the year.  One woman council member raised her arms and cheered – cheered at the demise of our loved ones – what type of advocacy is that?

Please, if you believe in advocacy which supports our citizens and looks to quality, sustainable and accessible care, consider writing to Ed Holen, Executive Director  or other staff members of the Developmental Disabilities Council with your concerns.  They need a dose of reality.

DDC Letter November 18

Thank you,

Cheryl

Please write to:

Developmental Disabilities Council

PO Box 48314
Olympia, WA 98504-8314

Ed Holen, Executive Director Ed.Holen@ddc.wa.gov

Jennifer Blazian, Contracts Manager Jennifer.Blazian@ddc.wa.gov

Sieng Bonham, Budget & Fiscal Director : Sieng.Bonham@ddc.wa.gov

Brian Dahl, Support Coordinator : Brian.Dahl@ddc.wa.gov

David Maltman, Policy and Community Partnerships Manager David.Maltman@ddc.wa.gov

Donna Patrick, Public Policy DirectorDonna.Patrick@ddc.wa.gov

Phillip Rasmussen, Receptionist Phillip.Rasmussen@ddc.wa.gov
Eva Rooks, Planning and Communications Manager Eva.Rooks@ddc.wa.gov

Linda West, Membership Services Coordinator  : Linda.West@ddc.wa.gov

Our Citizens are worth the fight to maintain civil rights

Let’s uphold the civil rights of all of our citizens, regardless if they are able to stand up for themselves or make their voices heard.

Over and over again, we hear about a fictitious number of DDD clients who do not receive services, we hear about  how keeping our RHCs open takes away services from those who may need services and our most vulnerable citizens with the most complex needs are continually accused of using more than their share of the pot which makes others go without. 

 This is the “Big Lie” that is told over and over again by agencies which masquerade as Disability Advocates.  They state that it is cheaper to care for these individuals in the community – yes, that’s true if you do not support their assessed needs.  That’s this issue – these individuals have needs that have been assessed and they are in the environment which best supports their needs in order for them to be as active and successful in their life and community as they can be. 

 Yes, there are individuals with just as complex needs living in the community – no one is denying that fact.  Also, no one is telling those individuals or their families that their care is too costly so they will be evicted.  These individuals are celebrated for the fact that they live in the community  – no matter what the cost.  But I ask, are they really “in the community?”

 I’ll tell a story of a man that has recently moved out of Frances Haddon Morgan Center.  This man has been celebrated as a success for the Roads to Community Living Grant.  I attended a parent gathering this past spring which was geared at informing parents/guardians of the benefits of moving their loved ones out of an institution.  Brock was the example they highlighted in showing how great this program could be.  There is a video on Youtube entitled “Brock 8” which refers to this gentleman.

 At this gathering, we were told that the transition for Brock was very intense involving many specialists and took about 2 years.   In those two years, there was much property destruction that needed to be fixed due to Brock’s behavior.  Brock and anyone who would be working with him needed to be trained in the Picture Exchange Communication System (PECS) which Brock would be using in his new job situation.  Everyone from the Residential agency, DDD and other programs which were involved with Brock’s transition spoke to the difficulties but that over time (2 years) Brock was able to live in a community home and have a job. 

 What was very interesting to me was that they then said, “He had that job for about 2 months but isn’t working now but we won’t go into that.”  I took that to mean that this expensive experiment wasn’t as successful as they wanted to picture it so they were going to end the success story at this point.   I later asked about this but due to HIPPA, I am not privy to the information but was told that yes, Brock was not working but was “volunteering.”  There had been a change in vendors and since it had taken several months to train the previous vendor, it would be anticipated that there would again need to be months of training for a new vendor. 

 I do know that there are two young men who have moved out of an institution into a community home.  For these two men, who cannot have others living with them due to safety issues, the staff and housing for each of these men is at least $500,000 a year.  (DSHS)

 I was provided with the list of the 30 most expensive clients for community residential clients by DDD.  The average annual rate for this group is $218.000 per year (range = $181,603- $353,973) – that is only the portion of care that DDD expends.  This does not include other services in the DSHS package such as medical, economic aid, transportation or food stamps.   There are other clients who receive 16 hours private duty nursing care in addition to other services to enable them to live in a community home.

{For reference, the average annual comprehensive cost for an RHC resident is $186,000 (DSHS)}

 These are the complex care clients who live in the community and these clients are expensive no matter where they live.  Moving more complex clients out into community homes against their wishes only for the sake of ideology of the masquerading advocates is a nightmare.  There is so much wrong with this scenario yet because of the untruths and rhetoric that are continually published without question, people believe what they are told. 

 

Our citizens deserve better. 

 When a person chooses the environment which works for them as guaranteed under Federal Decisions, no one should be able to evict them from their homes.  On top of this, the reasons given are under false pretenses:  less expensive, more involved in community, better care – none of these reasons can stand up when the facts are presented.  The problem is that the facts are not presented or presented but tossed aside because they do not support this ideology gone awry. 

 One huge part of this problem is due to the silo effect as explained in my previous post.  Sure, maybe moving a client out of the institution would make the DDD budget less but those costs are still there under another program within DSHS or put upon the community (as in increased emergency calls to the Fire and Police Departments.)  It’s time that our government, legislators, advocacy agencies and citizens were responsible and looked at the whole picture of care – not just the peephole that suits their cause. 

 It is clear from actually looking at the figures that in reality, the comprehensive care in the RHC is much more cost effective than care for an individual who chooses to live in the community.   I don’t understand why the residents who choose to live in the RHC, which is clearly a cost effective care center which supports their assessed needs, are harassed and threatened with eviction, due to their care being expensive when in reality, their care is less expensive than if they chose a community setting. 

 Yet, if they chose a community setting, the cost of their care would greatly increase, yet these same advocacy groups who complain about their current care being too expensive, would then celebrate in the fact that their care is now community based, yet much more expensive.   

THIS JUST DOES NOT MAKE SENSE if one really cared about the person.  So, obviously, this issue is not about the care of the person but about something else.  Who are these advocacy groups really advocating for? 

 

 

Works Cited

DSHS. “DSHS Client Services FY 2007-2008.” n.d. http://clientdata.rda.dshs.wa.gov/ReportServer/Pages/ReportViewer.aspx?/CSDBAnyYear/Landscape_StateClientSvcsByAge.


Washington State Senators who voted “Yes” on SSB 5459 are tagged in this message.  I don’t believe that these Senators were exposed to the real issues or that the facts were presented to them.  I believe that their decisions on this case may have been based on rhetoric and false assumptions that prevailed in the legislative session.  I would love to talk to any of them and try to educate them on the real issues with real people and real cases involved.

Mama Bear is Showing Up!

Happy Mother’s Day –

Every one knows how ferocious a mama bear can be protecting her cubs and knows to get out of the way.  I’m feeling like that mama bear right now and getting madder and madder.  Someone is attempting to hurt my child – not just my child but the children of many of us and it’s time to step back or it won’t be pretty.

I’m tired of being nice and playing the game.  I’m tired of DDD case managers denying services to children and adults who are needing services and who are approved for those services yet DDD continues to deny them.  I’m tired of the  DDC acting as if they know what’s best for our most vulnerable citizens yet shunning and censoring information from the experts – parents and caregivers.  I’m tired of so-called “disability advocates” from The Arc chapters behaving as if they care about our most vulnerable citizens and I’m mostly tired of all people from those agencies deliberately causing harm to our citizens.

I can tell you that a DDD case manager wondered why I didn’t restrict fluids from my son so that he would not wet his bed.  This was not just a little wet, this was a monster wetting which necessitated laundering every bit of bedding every day due to being soaked.  This was not a case of simple bedwetting but a case of neurogenic bladder that only relaxed at night so that was the only time he could really empty his bladder – while he was asleep – the only time his body ever relaxed (that is if he did sleep.)

This is the same DDD Children’s manager who I overheard tell my son’s case worker “do not offer them anything.”  That was after a meeting I had with them while he was hospitalized his for the 5th time in Seattle Children’s Inpatient Psychiatric Unit, psychotic and manic.  We had looked at Fircrest for him, we and his healthcare team knew it would be the best place for him – particularly since we had been told that another hospitalization would not be approved.  Our son was 14 and the DDD Children’s manager said “DON’T OFFER THEM ANYTHING?”

What is wrong with this picture?  Whatever it is – it needs to change and I’m doing my best to make changes.  Just as Ed Holen and Sue Elliott from the DDC and The Arc say on their Olympia Insider videos on Youtube “Change is made by those who show up.”

I’m going to be showing up!