Do you know what you advocate for?

As a parent who has survived a revolving door of crisis after crisis and of a child who was given a second chance at life by being allowed his right to admission into a Residential Habilitation Center, I write this letter with hopes and dreams but also with sadness.  If one person’s life is saved by this, it’s worth it and I do know that I become a broken record – but it is necessary to be heard.

When our child lived at home we had no other life but trying to keep him safe and healthy.  I was not able to attend any meetings or participate in  advocacy beyond trying to work with DDD to approve the “allowed” services and support on the waiver he was on.  After several years of fighting just to get him prescribed supplies (DDD denied them as ‘unnecessary”) I turned to The Arc.  The Arc was no support at all – I was told to call my legislator.  Well, as a parent in crisis, that recommendation seemed ridiculous (now I know different) but I think that someone from The Arc could have helped me – they had no interest in helping me or our son.

Up until then, I had assumed that The Arc and the other DD advocates really did have the best interest of those with Intellectual Disabilities (ID) in mind.  I now know differently.  I see the false advocacy and hidden agendas and mud slinging that is done in addition to the personal assaults and censorship that allowed.  This letter will name specific people  – a practice that I have realized that I need to do in order for them to have some accountability to our community.

Why aren’t these advocates held accountable to being responsible stewards of our public resources?  They are failing us.  It’s time that these folks answered questions and responded to inquiries, rather then writing personal attacks to and about the person who asks the questions.  I would gladly discuss the issues with them or answer their questions about the research I have done or the data I have collected – they are not interested in even looking at though.

Mark Stroh – Executive Director of Disability Right Washington 

Sylvia Fuerstenburg – Executive Director, The Arc of King County

Senator Adam Kline

Developmental Disabilities Council

Please ask these people to:

1.  Read the US DD Act

2.  Read the 1999 US Supreme Court Decision Olmstead

3.  Review the data regarding cost of care for people with high care support needs. (

4.  Defend the research in the Report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” – also, if you know anyone who does any research, have them take a look at this and see if they can defend the author’s findings.  Let me know what you find out.

5. Ask them if they understand the significance of the Support Intensity Scale and the DD Assessment which looks at activities of daily living. (

6.  Have them review the non profits and financial statements which work with ID clients in our state

7.  Have them look at the issues of, lack of stability and sustainability of our caregivers, which directly affects the health and safety of our loved ones. (

I’m not interested in hearing the same rhetoric from The Arc Advocates and their constituents – that information is inaccurate and misleading.  I’m interested in speaking with those who actually would like to know what the data means, where it came from and what it represents.  Those in The Arc do not know this information.  DRW does not know this information. Community Residential Service Association does not know this information.

 It has been shared with all of these organizations but they will not acknowledge the information because it does not support their agenda.

I can say that I have appreciated conversations which I have had with Sue Elliott, Executive Director of The Arc of Washington.  She has been candid and has indicated that yes, I am correct in stating that for those with high support needs the cost of care would be more expensive in community settings.  The Arc, though, believes that no one should live in any congregate care and that is what they advocate for.  It is fine to advocate for no congregate care but in so doing one also has to use accurate data and say that they do not agree with congregate care but it will cost more.  They are not doing that – they are giving false information to support their advocacy.  This is very detrimental to ALL with ID.

Please, I welcome questions and concerns.  I would appreciate feedback and will get back to you.  I have researched much of this data and have the public records and citations of all resources.

Please share with those who may need to know or understand this information or have them contact me.  I would be very happy help anyone understand the complexities of caring for a person with ID who has very high support needs.

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.


The role of Protection and Advocacy

I have had the opportunity to have exchanges with Mark Stroh, the executive Director of Disability Rights Washington, regarding several different issues.  There will continue to be discussions with him and others at DRW regarding the role of the Protection and Advocacy Agency (P&A Agency).

With regards to my most current interactions, I have found concern regarding choices of individuals and/or their guardians non-existent and the answering of my questions “nonproductive”.  Maybe he finds answering the questions unproductive because he is not answering them?

I am again sending Mr. Stroh a letter (DRW August 26 2011 letter)  indicating my concern about DRW’s lack of adherence to the DD Act in opposing H.R. 2032 and also in the lack of respect and concern voiced by the individuals and/or guardians whose lives are going to be affected by some of the policies and actions of DRW.