Prove Me Wrong

Being fairly new to advocacy work, I imagine that I started to ask questions that had not been asked by those who have been around for awhile.   There have been many assumptions that have been looked at as facts and from what I can tell NO ONE has questioned the Division of Developmental Disabilities  (DDD) and The Department of Social and Health Services (DSHS)  regarding the accuracy and completeness of the reports and data that they give for advocates and legislators to work with.

Given the data that has been available, (which as been incomplete and inaccurate when compared to original sources) many poor decisions have been made.  I really do not understand why an agency that is granted the responsiblity to protect our most vulnerable is utilizing inaccurate information which will be used for policies which would then cause harm to that very population.  Can someone explain this to me?

Also,  when I have contacted many of the advocacy groups about this I have only heard that they only take the information that is given to them and assume it is correct without checking into the actual data.  Why wouldn’t anyone question where the data came from?

Most recently I have applied to join the Community Advocacy Coalition,  (CAC) a coalition made up of organizations which advocate for our citizens with developmental disabilities.  Scott Livengood, chair of this coalition informed me the of the admission criteria:

1. Be a organization with a 501 c(3) status, a licensed business or a public organization, and

2.  Sign the Letter of Agreement and support the Core Values

The admission form and Core Value statement are all very good with the exception of the last paragraph.  I filled it all out and wrote to Mr. Livengood that I was an advocate for a continuum of care and that as a business owner and advocate I could not sign the agreement as it was but offered my edits to which I could fully agree.  He wrote that he would take it to the membership  to discuss and get back to me.

Today I heard that my membership was denied.  I’m not surprised because I am aware that the CAC really does not live up to it’s own core values and that a large percentage of the member “organizations” do not meet the criteria in #1 above.   In addition, from being able to attend one meeting and reading minutes from other meetings it is clear the motive of the CAC is to close congregate care facilities to promote profits to the vendors.

I had offered to make a presentation to CAC with information regarding the data which I have researched  would be fully prepared to defend the information.  They did not take me up on the offer.  From the denial of my admission and lack of interest in having a presentation regarding critical information which they are lacking, I have come to the conclusion that the purpose of the CAC is to consolidate and close congregate care, deny services to those who need the high support need services that would be available to them in a continuum of care model and to accept negligence and crisis as the standard of care for our citizens with intellectual disabilities.

This is totally unacceptable and particularly so when CAC states values such as:

“Nothing about us without us”

“Provides a platform for advocacy organizations to share information, educate one another on issues of mutual concern ”

“Our many voices join in unison for one common vision”

That is fine that they will not accept the letter of agreement with the edits which I provided but then to not even take me up on the offer to share information, educate the group on missing data and give them the chance to ask me questions and to hear the defense of the data is further denial of information to those who critically need it in order to make informed decisions.  These actions do not uphold their core values at all.

Again, I am not surprised by the denial of admission since it is the consistent with the censorship against the information which I try to share and the banning of comments and postings from me on any of the sites which are part of The Arc monopoly on DD advocacy.  It is due to this monopoly that more thorough and accurate data and information is not known since the monopoly will not allow it to be publicized and distributed.  This is a very sad state of affairs and one which only adds to the crisis that they supposedly state they are trying to correct.

Without accurate data the crisis will continue to escalate and those who support a continuum of care will continue to be the scapegoat for this while the vendors make profits = profits that could very well be used to provide more services and supports to those in critical need.

 

 

5 comments on “Prove Me Wrong

  1. Beth Moore says:

    I’m a GrandParent, raising a 16 year old but 18 month old mentally disabled GrandSon. Recently DDD cut over half of DJ’s personal care hours. We have a hearing schedule for the 23rd of Aug. I know there is nothing you can do about this bur wanted to let you know that I am so thankful there are people like you. You give me hope that someday their eyes will be opened. I am going to have to have to give custody of him to the state because of this decision if we loose the hearing. Even asking the union I was forced to join will give me no help. I just wanted to say Please keep on fighting because when I am donewwith this hearing and we loose I promise to join the fight with you and will be going to the media and anyone else who will listen Thank You again for being there ..

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  2. I am so very sorry to hear your story and I know that you are not the only ones who are fighting this crisis. We found that if appears that DDD wears families down to brittle bones, lies to them, denies allowed services and makes the family jump trough incredible hoops only to get minimal – if that – care for their family members with intellectual disabilities. How scary to think that they will take custody and be in charge of your grandson’s care. If I could be of any assistance to you or help advocate for you, let me know.

    I fight this fight for our son and other families such as ours. I want to make it so families are not destroyed in trying to get humane care for their disabled family members and we need to get the word out about the truth of the situation – not the same old lies that are told over and over again.

    If you would like advocates on your side, email me. I’ll see what I can do to help and try to pull others in to help you. We need to stand together.

    The monopoly does not want families such as ours to connect because the truth will come out. That is one reason why I am censored becuause if people heard what I and others who support a continuum of care are saying, their businesses would not make the profits they make because they would have to spend more to actually help those less fortunate and in need of services.

    Again, I am so very sorry. I worked with a family a few months ago who The Arc had abandoned because the mother started to complain about the negligent care her son was receiving in a SL Start home. It was a horrible mess with the mother being charged with abandonment and inability to care for her son and she was denied visitation. The boy had already been in an RHC and moved out on the roads to community living grant as the “model” child. At first the Arc catered to her but as soon as she started to see the ruse and asked for help, people from The Arc would not return her calls or help her. It was clearly obvious she was not able to safely care for her son – that’s why he was in residential care to begin with. When she had him ambulanced from the SL Start home to Seattle Children’s (because she could not safely transport him) she was attempting to get him into a safe place and cared for. SL Start called CPS and filed charges against HER and her son was taken into custody and returned to the exact same home in which she had alleged abuse had occurred.

    The above case was settled at much cost to our state and financial and emotional cost to this close knit family but the boy was moved to another residential care home with a different provider and the family is stable and has regained custody and visitation.

    I am currently working with another family who has realized that the residential homes DDD wants to move their 18 year old son to are all show houses. The vendors are not stable and move residents around in addition to having up to 45% staffing turnover. Again – negligent care. DDD wants to move this boy out of his community yet he has thrived in the RHC which is in his community. We are still in the process of working with this family but I can tell you that they too felt alone and isolated until they were able to connect with our group of grassroots advocates who actually advocate for the heeds of the person and their family.

    Please stay in touch and keep us updated. We care.

    We need to old these agencies and advocates accountable and expose the tricks they use. They are only hurting everyone by not looking at the information accurately and by not looking at the needs of the people. When the vendors are considered the priority – our loved lose out.

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    • Beth Moore says:

      Thank You for your letter. I know there are many people out there that are in a lot worse shape than we are in. That is why I so wanted to thank you personally for getting involved. I think we are beyond your help we had to have all of the paper work and witness’s in by the 9th which has came and gone. I sent them a boatload. lol But you are so right they do not want us to band together that is the only way we can fight back. I read the story about that Lady, in one of your earlier posts, it is unbeleivable. Did you know and you probably do that disabled people were getting kickbacks for choosing certain vendors for their needs. This is so far beyond reproach . The Vendors charge the state twice what a normal person would pay for the same services, but we need our wheelchairs and other needs so no one really wants the truth to come out. Just knowing there is a beginning wave to fight back helps me a lot. Please say a prayer for us. Let me know how I can help you in your cause.

      Thank You
      Beth Moore 425 355 6537

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  3. Bob says:

    Wow, this sums up my experience with The ARC, DSHS – DDD management when it came to my brother’s care. If I didn’t find someone who worked at an RHC who is one heck of a dedicated advocate my brother would not be alive today! I spent one controversial term on the DD Council before being railroaded off. Between the ARC, the Council and the private providers (oh and don’t forget DRW they are only there to sue and harass the RHCs and RHC staff) it is nearly impossible to get the kind of care someone needs. They will do all they can to block access to the RHCs. I worry about accountability whenever the state contracts out for goods or services, this is especially true when it comes to services for our families. To put it bluntly, how do you find who it is you have to SUE to get something done?

    Thank you to everyone who has protected choice and understands that a continum of care is inclusive of public and private initiatives.

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  4. saskiadavis says:

    Thanks, Cheryl, for your effort to educate CAC. If CAC were a private club, such a rejection would be understandable. However, if they happen to have a 501c3, perhaps they should be thinking about true inclusion. It may be that such rejection is not compatible with 501c3 status. That said, it also may be that even if successful,
    further efforts to force membership admission and presentation of information to such a closed-minded group would simply cause further entrenchment without any enlightenment.

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