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.