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.



Is The Arc crossing the line? Where does the Antitrust law come into play?

The time has come for people to be aware of the monopolistic power which The Arc organization wields regarding control over information dissemination, public policy, social media and advocacy with regards to issues concerning our citizens with intellectual disabilities.

1.  The Arc frequently misinterprets the U.S. Supreme Court Decision Olmstead:   (From Legal Information Institute – Cornell University Law School )

”  This case concerns the proper construction of the anti-discrimination provision contained in the public services portion (Title II) of the Americans with Disabilities Act of 1990, 104 Stat. 337, 42 U.S.C. § 12132. Specifically, we confront the question whether the proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions. The answer, we hold, is a qualified yes. Such action is in order when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. In so ruling, we affirm the decision of the Eleventh Circuit in substantial part. We remand the case, however, for further consideration of the appropriate relief, given the range of facilities the State maintains for the care and treatment of persons with diverse mental disabilities, and its obligation to administer services with an even hand.”

And more:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings”.

” Consistent with these provisions, the State generally may rely on the reasonable assessments of its own professionals in determining whether an individual “meets the essential eligibility requirements” for habilitation in a community-based program. Absent such qualification, it would be inappropriate to remove a patient from the more restrictive setting.”

“Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

“There may be times [when] a patient can be treated in the community, and others whe[n] an institutional placement is necessary For other individuals, no placement outside the institution may ever be appropriate. See Brief for American Psychiatric Association et al. as Amici Curiae 22—23 (“Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times–perhaps in the short run, perhaps in the long run–for the risks and exposure of the less protective environment of community settings”; for these persons, “institutional settings are needed and must remain available.”); Brief for Voice of the Retarded et al. as Amici Curiae 11 (“Each disabled person is entitled to treatment in the most integrated setting possible for that person–recognizing that, on a case-by-case basis, that setting may be in an institution.”); Youngberg v. Romeo, 457 U.S. 307, 327 (1982) (Blackmun, J., concurring) (“For many mentally retarded people, the difference between the capacity to do things for themselves within an institution and total dependence on the institution for all of their needs is as much liberty as they ever will know.”

2.  By misinterpreting “Olmstead The Arc incorrectly informs the public that “Olmstead” does not support Intermediate Care Facilities for People with Intellectual Disabilities (ICF/ID) or congregate care.

3.  Many chapters of The Arc censor and block postings which point out the inaccuracies of this misinterpretation.

These behaviors from The Arc Chapters are bordering on violating the U.S. Antitrust Laws by possessing a monopoly of power in a relevant arena and willfully acquiring and maintaining that power by censorship of information to the very population they state they are advocating for.  If The Arc did not run a monopoly I believe they would welcome the sharing of information to better inform people of their choices with regards to person centered planning.

The Arc does not support a continuum of care system and by this decision is practicing discrimination against some of the very people they state they advocate for.  How can this be?

The Community Advocacy Coalition requires members to sign a contract which states they oppose congregate care.  How many of these organizations understand by signing this contract they are violating the rights of many who they say they advocate for?  By requiring members to sign this contract, The Arc of Washington State is denying membership to many who advocate for a continuum of care, a system which upholds the Olmstead Decision and person centered care based on the individual’s support and care needs.

This decision of The Arc to perpetuate misinformation and block others from discussions is unfortunate.  There is much good that The Arc has to share but by this practice of censorship they are doing a great disservice to our communities.  I urge The Arc chapters to take a look at their policies regarding this information.

One may wonder why there is not alot of information regarding this topic on other sites.  The reason is that if one attempts to post something that does not align with what The Arc states, the post will most likely be removed and the author will be blocked.

Here is one letter that I received from the policy director of The Arc of Washington after several requests of mine to be unblocked:


Cheryl – Sue Elliott and I discussed allowing you to post on The Arc’s social media sites again with the understanding you will abide by the rules of not posting derogatory comments about The Arc and other community advocacy organizations. In order for this to happen, I need you to unblock me from seeing your Facebook posts. Please notify me when you have done so. Thank you  (Written November 3, 2011)

1.  I have never blocked any of the members of The Arc

2.  The term “derogatory” means “not in agreement with” to them

3.  I am still blocked from their sites even though I responded to the above note.