DDD Costs of Care and Decisions which cost lives

Some decisions have been made which have cost people their lives – I’m hoping that before anymore lives are lost or hurt, our legislators will be given accurate data upon which to base their decisions.

This has not happened in the past due to ideology gone awry.  The cost reports for the care for our citizens with developmental disabilities has been falsified and reported inaccurately.  As a start to this, I have prepared the attached letter – it has a few charts and examples of where this reporting has really missed capturing the costs of care for some of our citizens with the highest acuities who chose to live in small community homes.  Remember, this is not the choice for everyone.

The RHC is the most COST EFFECTIVE environment of care for our citizens with the highest acuity.  Why, in times of budget crisis would people allow these misleading cost reports to guide them is beyond me – not only are we ending up spending more for less care but fewer and fewer people will be able to receive care too.

Please read the letter –  Comprehensive Cost comparison

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

Respite Revamp

In light of the devastating cuts proposed by Governor Gregoire, I will be posting ideas with innovative programs which are aimed at improving services and cutting costs.

It needs to be made clear to everyone that the costs and services attributed to the Home and Community Based Services are only “allowed” services.  This does not mean that everyone on the waiver has services.  Everything must be approved and DDD tends to deny most requests for allowed services.  When the “averages” are reported by DDD, they are extremely misleading.

My next post after this one on respite will address the HCBS waivers, what they entail, how many people actually receive services and the cost range for a variety of services.

Regarding respite:

Respite is one of those “allowed” services – yet I know very few people who actually received respite.  Our family for instance was in crisis for 3 years yet our son NEVER received any respite.  He was hospitalized instead.  I make these recommendations based on our own experience and from conversations that I have had with others in the community.  I can only speak of programs that I am familiar with and build from there.

The Seattle Parks and Recreation Department has a Specialized Programs division.  This program has been the absolute best program for our son and family.  If more programs such as this were available and people could use this approach for respite, it would serve more people, be more reliable and cost less than the current programs.

Please see Respite Revamp for my ideas.

Deinstitutionalization – Risks now outweigh Benefits

More horrible budget news today and I really don’t know what to say – how much more can we take?  People are already dying due to this crisis and the plan that Governor Gregoire put out today guarantees that more of our precious loved ones will die.

I am also continually shocked by the misinformation that our Governor is basing some of these disastrous decisions on.  Most notably is the false information that closing our Residential Habilitation Centers (RHCs) will save money.  The reality is that this will cost more money and more lives.  We have already experienced this in the process of closing Frances Haddon Morgan Center this year.

There has been one documented death so far.  There have been several injuries to residents and many of the residents who have transferred from Frances Haddon Morgan Center to Fircrest are experiencing difficulties.  It’s not only the residents who have transferred but the residents who were already living there are experiencing increased anxiety and behavior issues.

I cannot imagine what many people who are living in community homes must be feeling – fearing for their lives with no safety net there for support.

I have attached a chart which documents true costs of care in a variety of settings.  This data is taken from the DSHS EMIS report for December  2009 –  Dec 2010.  The data for the Supported Living Programs is taken from the Certified Residential Care Cost Reports that each agency must submit every year to DDD.  These are the 2010 reports.

Some very interesting data is clear:

The RHCs are THE MOST COST EFFECTIVE and COMPREHENSIVE care for some of our most vulnerable citizens.  This chart does not even include the cost of food, healthcare and most habilitation services for our citizens with disabilities.

Take a look and see – let me know if you have any questions.  Cost of Care Measure

Opinion published in The Stand Risks of Deinstitutionalization now outweigh benefits

It is also interesting to note the profits that many of these agencies make.  It would be great to use some of that money for improved services to more people.

State Audits Show DSHS lost over 2 million dollars due to mismanagement

The Department of Social and Health Services is so mismanaged that they have lost over 2 million dollars in our public funds in just the past couple of years.

I want to know why the department is not scrutinzed and held accountable for thier lack of ability to manage payroll, contracts, benefit payments etc. yet say they do not have the budget for cost effective, crucial programs and services for our citizens with developmental disabilities.

Why is DSHS allowed to cut programs, why do some prominent agencies which masquarade as disability advocates, some of these even paid with our public funds themselves, advocate for closure of needed and desired programs while at the same time pushing for the undertaking of costly experiments with the lives of our most vulnerable citizens?

I am outraged by not only the lack of accountablity but the lack of integrity in the managment of DSHS and the integrity of some advocates (The Developmental Disabilities Council, The Arc Chapters, just to name two – there are more involved in this scandulous cover-up)

Our legislators and public are not told the truth about the costs nor are they told the truth about what is found in the data of many reports.  Not only is much of the data misrepresented but U.S. Supreme Court Decisions, such as Olmstead, are misrepresented by these agencies.

It is time that we, as grassroots advocates, make these issues known and upfront.  It’s a hard battle to fight but we need to do it for those who cannot do it themselves.

See this document for resources, facts, Washington State Auditor’s reports and other issues.  Many of these issues were defered and will be looked into this year, hopefully.

DSHS Audits and losses

DRW Validates Concerns regarding Safe and Quality care in the community for RHC residents

 

Mark Stroh, Executive Director of Disability Rights Washington (DRW) has written a letter to Governor Gregoire protesting her veto of Sections 7 and 11 of SSB 5459.  Even though DRW supported SSB5459, I am pleased to see their concern regarding the Governor’s veto of these two critical sections which were put in to assure safe and quality care for our residents. 

 

Without these two sections, there are no commitments to ongoing services, continued safeguards, quality assurance and independent oversight for the health and safety of our residents. 

 

Thank you to Disability Rights Washington for validating the concerns that we, as grassroots advocates for a continuum of care for our citizens, have been highlighting in our statements to the public and our legislators. 

Washington State, DSHS and DDD discriminate against our youth

With the passage of a new law which our Governor, DSHS Secretary and some prominent groups which masquerade as disability advocates celebrate as “historic,” they are certainly correct.  The reason that this law is “historic” is because it discriminates against our most vulnerable citizens and in particular our youth with complex needs. 

 

 I must admit that I am still stunned by the passage of SSB 5459.  The process with which this bill was passed, the rhetoric which was continually pushed and the total dismissal of facts derived from data from the Department of Social and Health Services and The Developmental Disabilities Division’s own reports all pointed to a pre-planned action to dismantle the service system which supports a continuum of care for our citizens with disabilities. 

 

There are so many issues relating to this bill which are questionable from a legal standpoint in addition to total violation of Federal Statutes as determined by The Olmstead Decision.  Yet, for some reason, Governor Gregoire and DSHS Secretary Susan Dreyfus are celebrating what many of us consider one of the darkest days in disability advocacy. 

 

SSB 5459 prohibits admission of children under age 16 to a Residential Habilitation Center (RHC) for people with developmental disabilities and limits RHC admissions of youth, age 16-21, to short-term respite or crisis care.  Both of these two age groups are greatly discriminated against in this bill.  The civil rights of these groups are being singled out and denied.  This is a travesty – not only for these children but for their families and our communities as a whole. 

 

What we need to focus on are the needed supports for our citizens.  Prohibiting one group, based solely on age, even though they may require the needed supports that are provided in the RHC is denying these citizens their legal and civil rights.  DSHS states that the children should be living with their families and in their communities.  Yes, that is ideal but what DSHS and DDD are failing to realize is that there is a continuum of needs and this continuum goes across all age ranges.  For some, living in a community home or family home is not safe due to the limited supports available.

 

Ms. Dreyfus and many others, speak about the residents in the RHCs as if most are elderly, have lived there most of their lives and that the families and guardians are fearful and unaware of the services in the community.  Ms. Dreyfus is very misguided in her understanding of this. 

 

In fact, there are many newer and younger residents who have been admitted to the RHCs in the past years.  These families have chosen the RHC community as the better option for their children mostly because the services and community supports were not adequate or safe for their children.  The RHC has saved the lives of many of these youth and strengthened their families by providing comprehensive, safe and healthy care to their loved ones. 

 

I recently asked Ms. Dreyfus what would happen to these children under 16 who could not be safely cared for in a community residential home or family home.  Her response to me was that the families will always have the choice of an RHC but they will have to go out of state.  I ask, is that really a CHOICE?  From my experience and others, the other choice that DDD would offer is to have the police take our loved one with a developmental disability to jail.  Why are Washington State, DSHS and DDD refusing to allow our eligible youth full access to the needed supports and services which they are legally, by Federal Statutes, entitled to?

 

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.

Letter to the Editor in The Seattle Times

 

 

Link to letter to the Editor regarding Governor Gregoire signing Substitute Senate Bill 5459 into law.  This is a sad commentary on the priorities of our state with regards to the care of our most vulnerable citizens and their quality of life, health and safety.

 

http://seattletimes.nwsource.com/html/northwestvoices/2015341101_govgregoirevetoespartsofmarijuanabill.html