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?

 

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.

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.

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!

DDD Errors and misinformation

Due to continued reliance on the reports from DDD and DSHS, I am now writing daily reports informing our senators of the flawed data and analysis in the information they are receiving.  If anyone would like sources of the original documents and data, let me know – I have them.

The Arc of Island & Skagit Counties

What is advocacy?

Maybe I’m being an idealist but what I see happening is not what I call advocacy.  I see people being used and paraded in front of our legislators.  These people, many who have a developmental disability are being given statements to read.  I really wonder how many of these statements are actually self-directed.

I have been asked  if RHCs are so great, why don’t we see people down in Olympia who say “We LOVE RHCs” –  asked by a prominent advocate from The Arc of Island and Skagit Counties who regularly accompanies self-advocates in testimonies.   Just the fact that she asks that question indicates to me that she is unaware of the significant complexities that many of the residents whose home is an RHC deal with.

I have thought of taking my son to Olympia too but I don’t want to use him as a puppet.  It would be an eye opener for many though to experience him first hand and to have a frame of reference as to the vast continuum there is when talking about people with developmental disabilities.

I have written to Joy Caldwell, Executive Director of The Arc of Island and Skagit Counties,  twice with the hope of having a discussion. She has not responded but she did post this on their Facebook page.

The Arc of Island & Skagit Counties

“So in the spirit of open dialogue, I would like to hear from anyone interested in posting their thoughts on the topic of Supported Employment, Community Access & Day programs in light of our WA House & Senate Budget proposals for people with Developmental Disabilities. What do you think…?”

Hi Joy,  (April 15, 2011)

I wrote to you a few days ago asking for open discussion.  I have not heard from you but did notice that on the Facebook page for The Arc of Island and Skagit County, you posted this ” So in the spirit of open dialogue, I would like to hear from anyone interested in posting their thoughts on the topic of Supported Employment, Community Access & Day programs in light of our WA House & Senate Budget proposals for people with Developmental Disabilities. What do you think…?”

I tried to comment but it appears that I’m blocked from commenting.  How can one have an open discussion when people would want to engage in one are blocked and censored?  This does not make sense.

Does she really want an open discussion?  If so, why are people not allowed to comment?

Thank you!

Thank you, all, for your support and help in making this issue more visible.  Many are unaware of the harm that some advocates are proposing.  You would think that disability advocacy groups would be all over this problem  but in fact, they are a huge part of it.

We have much work to do this week in Olympia and will do our best to make ourselves present and heard.  We’re up against very strong groups who have dominated and bamboozled many over the years.  We are beginning to chip away at that and informing people of the reality of caring for our most vulnerable citizens in the most cost-effective, safe and humane way possible.