King 5 News “Investigation” is misleading

Clarification on some of the information that Susannah Frame has reported in her “investigation” is needed.  My goal with providing clarification and resources is to encourage a discussion based on facts.

The nature of  an intellectual disability means people have cognitive impairments which may mean that other people will need to help them to make decisions, or make decision on their behalf.  Their quality of life will depend on the availability of skilled supports.  Some people will need more than others and this is why we need to have a full continuum of care to manage the wide variety of needs of this heterogeneous population. Personally, it does not matter to me what community a person chooses but it does matter that the person is given the truth about the options and that they have a choice.

Again, the story is not “community vs institution” but how do we best serve our most vulnerable people.  Continuing the either/or argument only hurts everyone.  Let’s look at the facts – not just wishful thinking – and work together to improve the quality of life for people all across the board.

  1.  Susanna Frame stated ” In all, 16 states have closed all of their large facilities for the developmentally disabled, including Oregon, Hawaii, Alaska, New Mexico and Oklahoma. These states are serving this entire population in community settings”
  2. In actuality, they may have closed their “state operated” intermediate care facilities (ICF)  but there are private ICFs in almost every state and if the state does not have a private ICF to use for a resident, the state will send that resident to another state for that care.
    1. Reviewing the reports to the Centers for Medicaid and Medicare  – form 64 (CMS -64 – the statement of expenditures for which states are entitled to Federal Reimbursement) there are only 2 states which did not receive reimbursement for ICF costs. (Oregon and Vermont did not have any costs, Arizona is excluded due to their non-reporting on this CMS report)
    2. If what Susannah Frames states is correct, why are these states receiving Federal funds for something they have closed?  That needs to be investigated.

The chart below has data retrieved from the CMS 64 Quarterly report for 2012.  As one can see, Washington is not “decades” behind when the data and resources are revealed.

ICF costs for 2012


“CMS – 64 Quarterly Expense Report.” 2012. <;.

“Community Living and Participation: Embracing the Complexity.” Intellectual and Developmental Disabilities 51.5 (2013): 423-427.

Larson, S.A., Hallas-Muchow, L., Aiken, F., Hewitt, A., Pettingell, S., Anderson, L.L., Moseley, C., Sowers. M., Fay, M.L., Smith, D., & Kardell, Y. In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and trends through 2012. Minneapolis: Univer: University of Minnesota, Research and Training Center on Community Living. Institute on Community Integration, 2014.

United States Census Bureau – Population Estimates – National Totals 2014. 2014. <;.

Doesn’t My Voice count? Let me decide what my community is!

My son Thomas lives in his chosen community. Living in his community enables him to engage in one of the few activities that he can do independently.    Using his savant memory for people’s names together with  his naturally exuberant personality and insatiable desire for talking with people, he greats every person he sees by name and calls out “hi (whoever he sees)” at the top of his lungs and jumps with joy whenever he sees someone coming or in the distance.  If he doesn’t know your name, you will be greeted with “what your name?” and “what country are you from?”  Don’t be fooled though – he will never forget!

Thomas lives at a Residential Habilitation Center (RHC) or Intermediate Care Facility for People with Intellectual Disabilities (ICF/ID or ICF/DD).  This is a campus community and one which suits him perfectly.

Below are some photos from his community:

Thomas’ Secret Garden – growing sunflowers and pumpkins here

Therapy Garden – Raised Beds – Thomas is growing herbs in his bed. He waters and tends to his plants here.

Open field next to the Healing Garden

FIrcrest Chapel nestled in the woods

Community members playing in the open field

Fircrest Healing Garden with wind chimes

Thomas running to the concert – excited about seeing Cowboy Buck and Elizabeth!

Below are some photos of some group homes in Seattle.  Group homes are wonderful for those whom the environment is appropriate but just because it is a group home does not mean that it is the least restrictive environment or a community.

Nice, well-kept group home but certainly not “community” or “least restrictive”

Another well-kept group home but is this “community?”

Community Home on busy arterial without fencing. Is this a safe community setting for a person who elopes?

 Please see this link for other issues with high traffic and group homes:  

Community Homes in High Traffic areas

I fully support a continuum of care and small, community group homes when that is the appropriate setting and truly the least restrictive environment for the individual.  What I am trying to illustrate here is the fact that just because a group home is situated in  a “neighborhood” does not mean that it is less restrictive, more community oriented or more appropriate for the person.  One needs to look at the individual and as both the US DD Act and the 1999 US Supreme Court Decision Olmstead state, the individual together with their family/guardian should be able to make the CHOICE.

Washington State Developmental Disabilities Council is out of compliance with Federal Regulations

According to the US DD Act , the state Developmental Disabilities Council membership must include at least ONE immediate relative or guardian of an individual with a developmental  disability who resides or previously resided in an institution or shall be an individual with a developmental disability who resides or previously resided in in an institution.   This is quite clear.

Washington State does not have a representative and I cannot find out when our state’s Developmental Disability Council had such a representative.  I have tried communication with Ed Holen, Executive Director of the DDC regarding this for over one year.  He cannot tell me who this person is.  Last year he told me it was a person who had already retired from the council and she was only a temporary and was not an immediate relative.  Since that time Mr. Holen has not answered emails or has evaded the question.  How hard would it be for him to give me the name of the person who holds this position?  All the names of the council members are public and are appointed by the Governor.

Now Mr, Holen wants to waste our taxpayers money and waste time by driving from Olympia to Seattle to meet with me to discuss this.  He will not communicate via email for such a simple request.

I am particularly disturbed by this lack of adherence to Federal Law due to the extreme bias against the population which needs the services and supports of the institutions.  Without representation at the table which is making policy decisions, how are these people’s voices going to be heard.

These actions (and lack of actions) on the part of the Developmental Disabilities Council is discrimination against our most vulnerable.  When will this end?

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.

Mud-Slinging Olympics

Mudslinging Olympics

My latest research regarding issues in the Shoreline School District and funding of high-needs special education students has uncovered so many inconsistencies that it will take some time to unravel the truth.

Aside from the school district’s budget woes, for which some of our most vulnerable children are becoming the scapegoat for, I have discovered some gems in going through archives.  Now with our state budget balanced and our Developmental Disabilities community coming out of the process better than expected from the beginning of the legislative session, I am very thankful to all who advocated for the needs of our most vulnerable.

In order to keep this momentum going, we must unite and stop the mud-slinging from one faction to another.  We can only improve by uniting and realizing that we need a continuum or care model.  In my research, I have come across so many issues that show fault with both (community and institution) systems and also many that show the benefits of both systems.  Neither systems is better or worse for the whole population – we need both for safe, quality and cost-effective care.  We need both systems to provide for the our community members based on their assessed level of supports and also to adhere to the U.S. Supreme Court Decision Olmstead and the US DD Act.

Below is part of an Editorial from “The Enterprise” from Friday April 28, 2006.  The Enterprise was the local Shoreline/ Lake Forest Park newspaper operated by The Herald, which printed it’s last edition on October 28, 2009.

April 28, 2006 – Editorial

“A half-century ago, the one-size service was institutionalization, coming in the form of facilities such as Fircrest School in Shoreline.  More recently, the pendulum has swung toward community-based residential care, houses in neighborhoods.  Proponents of both approaches make similar arguments that their plan offers more efficient and better care.  Each side also points to the abuses and lapses of care under the other system as evidence of the correctness of their crusade.

The reality is that no single approach can possibly be appropriate for every individual.  Abuse and lapses in care are evidence that any system is at the mercy of the frailties of humankind, frailties that must be braced bur are unlikely to be eradicated.

Recently, supporters of several former Fircrest residents filed a lawsuit, claiming a move to another intuition did harm to their charges.  On the other hand, the state is in the midst of investigating several group homes over concerns of inadequate care.

One need only to look at these examples – and many others – to see past the rhetoric and see that one size does not fit all and that a full spectrum of care choices must be available.”

My hope is that advocates for people with developmental and intellectual disabilities across the spectrum read this and understand that what we need is a spectrum to best serve this population.  The spectrum is the way to provide stability and sustainability.

Please, for the best interest of those who we are all trying to advocate for, realize that a spectrum is needed to best serve ALL people with developmental and intellectual disabilities and that CHOICE is mandated by Supreme Court Decisions and Federal Law.

About the picture:

Mudflad Olympic Games – maybe we should do something like this as a fundraiser and stress reliever for advocates?

Brunsbüttel, Germany, August 30, 2009–A competitor throws a ball in the annual Mudflat Olympic Games, a charity sports event played exclusively in mud.

One of the games is the eel relay race, during which runners carry a fake-eel “baton” made of a bicycle tire’s inner tube filled with rotting fish guts, rice, and a vibrator, according to the German publication The Local.

— Photograph by Krafft Angerer/Bongarts/Getty Images