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.

Somebody from The Arc, please explain this to me!

I’m very curious as to why a Disability Advocacy Group would oppose this legislation.  Could someone from The Arc please explain the position as to why the agency opposes this?

 

From what I read, this legislation upholds the civil rights and choices of the individual – isn’t that what we want?

 

I’m extremely confused by the opposition to H.R. 2032

 

 

(This notice is from The Arc – I do not endorse this nor do many who fight for the civil rights of our citizens with disabilities)

 

Civil Rights

Bill Name

Number of Sponsors

Position

H.R. 2032 – To protect the interests of each resident of intermediate care facilities for the mentally retarded in class action lawsuits by federally-funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident’s facility. 31 (15 R, 16 D) We OPPOSE this legislation

 

 

http://www.capwiz.com/thearc/issues/bills/

Medicaid Block Funding

As the Federal Government is trying to find ways to decrease costs, the issue of Medicaid Block Funding has been raised.

This is a very scary idea when it comes to funding programs and services especially to our citizens with disabilties.

I did find a very interesting comment from The Arc which is very contradictory to the arguements that they have been using in the past.  They have been saying that communtiy care is less expensive and more cost effective than congregate care.  This is actually not true and there is so much data that indicates the cost-effectiveness of congregate care for those with very complex care needs and high support needs that it is staggering.

Now, though, if Medicaid Block Funding is going to be looked at, The Arc will change thier tune.  They will say that congregate care is less expensive and block funding will force people into institutions because they are less expensive.

“States may decide to move people into institutions.  Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past.  With fewer requirements, it may be cheaper for states to care for people with I/DD in large facilities.”

http://www.thearc.org/page.aspx?pid=3085

So, which is it?  I know which is less expensive and have known but The Arc only decides that based on their agenda.

I do not think that Block Funding is the way to either but I find it interesting how The Arc is now saying that institutional care is cheaper.

DD Coalition

Check out this new group:

DD Coalition  

dd-coalition@googlegroups.com

Developmental Disabilities Advocacy Coalition for Washington State. This group advocates for a
continuum of care for our citizens with DD.

This includes person-centered care
which focuses on quality of life issues, health, safety and community for our
loved ones.

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

 

 

Court Rejects Claims of Abuse

Finally, the courts are listening to the real experts in the care of our citizens with developmental disabilities  –  the families and guardians.

We need to maintain a continuum of care for the health and safety of ALL people with developmental disabilities.  This is a victory for those who need the very critical part of that continuum that many with skewed ideologies have been trying to eliminate.

http://www.disabilityscoop.com/2011/06/09/court-rejects-claims-institution/13294/

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper

When I read this article and see no mention of SSB 5459 in this – I realize that the bill that was so critical in my mind was of little significance to the state as a whole.  I have a hard time coming to grips with this and then wonder, if this bill was of such little significance, why didn’t legislators listen to the sensible and responsible facts that were brought to their attention and vote NO on SSB 5459?  There must be another reason that overrode responsibility, basic human and civil rights, personal choice on residence as guaranteed under the Federal Olmstead decision and the Centers for Medicaid and Medicare Services guidelines.

If anyone could enlighten me as to what deals were made which caused this bill to pass I would love to know.  Maybe if I understood what was exchanged in order for a responsible, humane and sensible person to vote yes on this bill,  I could understand why innocent people were made scapegoats for such an “insignificant” bill.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper.

What’s the Better Deal?

Stop thisTrainwreck waiting to happen!

Please stop SSB 5459 – There is so much wrong with this bill that it will be hard to sum up in a concise and effective letter.  The critical issue is to stop this now and think about what the ramifications of such drastic changes will be if this bill is passed.

  1.  This bill is based on regurgitated false information from years past.  Senator Adam Kline continues to talk about “the 1970’s” with regards to our facilities today.  He is correct about the changes that needed to take place in 1970 but he’s far removed from the realities of the situation today and the recommendations from the experts of TODAY
  2. There are many in the community who are eligible and have requested admission to an RHC.  DDD has continually denied admission.  This is the only reason for a declining census in our RHCS.  There needs to be a survey sent out to all in the community who are eligible to inquire about their choice.  I believe you will find many who have chosen the RHC but their choice has been denied.  It is time that DDD actually supported and adhered to the Olmstead decision and respected people’s civil right to have a choice in where they want to live.  This is the very first thing that should be done before any or our RHCS are consolidated or closed.
  3. The reports that are generated by DDD are based on false information.  These need to be scrutinized.  I have researched the data and have found so many errors and flaws in the analysis of that data.  It is incredible that these reports are continued to be passed around as “fact” without anyone in the department questioning the concerns that I have raised.
  4. Rather than answering my letters regarding the fact that the “key points” are not supported by the data, DDD ignores the questions; Executives from The Arc accuse me of being “abusive” for questioning these reports.  As any person who has done research would know, it is expected to have people question your work.  When they question you, it is an opportunity to prove your point – not to call the questioner ABUSIVE.
  5. DDD reports that they have a Quality Assurance program which is up to date.  I will be sending  a synopsis of the issues I have had in researching the QA reports that should have been done, that DDD says they do, and the lack of knowledge about where they are, if they were even done and the multitude of players involved who do not communicate or know who has what report.  It’s a huge issue of “passing the buck” and nothing is getting done.  This NEEDS to be addressed before anything else can move on.  How can DDD say they have quality assurance when they don’t even have reports done, completed or available or even know who does them? DDD has not even complied with the requirements of The Roads to Community Living grant by completing the necessary surveys of the people who have participated.  The whole grant could be in danger without DDD following through with the requirements.
  6. People contacted regarding QA – still no data available – these people just keep sending emails around saying the next person has the data.  No one has it.  Players involved in this game:  (12 names which I won’t post here but sent to our House Ways and Means Committee members)  You would think that one of these people would be able to give a straight answer.  It’s time that DDD and the DDC are held accountable for their actions and lack thereof.
  7. DSHS is focusing their efforts on closing the RHCs.  The RHCS are about the only safe place for our citizens with DD.  The community homes which DDD so proudly talks about are a shambles – no safety or QA oversight, poorly trained staff with a high turnover, inadequate staffing levels and this is just the beginning.
  8. We hear about how wonderful the homes are in the community.  Just this past month I have been told by family members who have a grown brother and a 17 year old son in an Alpha Supported Living home and a SL Start home respectfully that they are not allowed to bring a visitor to the house.  What type of home is it in which as a sister or mother (or other family member) cannot even drop in to see their loved one or to bring a visitor to meet with them?  Why would they have these policies?  This is certainly not a home in which I would place my loved one. At the RHC, I can visit whenever I want, I don’t have to pre-arrange a visit, I can bring whoever I want to visit with my son.  There are no restrictions on my visitation with my own son.
  9. Rather than embarking on projects that are experimental and also on successful programs with people who are happy with those programs, it is time for DSHS and DDD to fix and bring up to standard the issues in the community.  This is where the energy and money needs to go.  These advocates talk about how they support those in the community yet their actions are contrary to that.  The problems with abuse, lack of oversight, lack of trained caregivers, and lack of services in the community will only be compounded by passing SSB 5459.

Please for the sake of not only our most vulnerable citizens who are safe and healthy in their current homes but also for all those in the community who will be hurt even more by the changes  that this bill support, DO NOT PASS SSB 5459.