Sylvia’s comments and thoughts shared

Sylvia Fuerstenburg, Executive Director of The Arc of King County, has again written an essay regarding the advocacy of The Arc for people against the right to live in supportive communities.   I just cannot wrap my brain around how an advocacy group, which receives thousands of dollars of public funds each year, is allowed to openly discriminate against a segment of the population which they are PAID to advocate for.  They clearly do not understand the situations of those who have homes in supportive communities and do not seem to realize that moving many of these people from their chosen communities and homes will only increase the crisis to the community as a whole.

Below is my letter to Ms. Fuerstenburg and Mr. Lance Morehouse, the Outreach and Advocacy Coordinator for King County Parent Coalition:  Please send your comments also.  I do not think that my comment will be published given past history of The Arc blocking critical information for families regarding supportive communities. but I keep trying to get through.

Dear Sylvia and Lance,

I would appreciate the opportunity to make a comment regarding your letter in the December Newsletter.  I do hope that my comments will be available for all to read and discuss.

I wholly support the mission of The Arc to advocate for people to live in the community of their choosing.  “The Arc believes that all people, regardless of the severity of their disability, can live successfully in the community with individualized and appropriate supports.”  I think that all advocates believe this – the problem is finding funding and maintaining a stable, qualified support staff as caregivers for those who need supports.

Do you listen to the people in the community talk about the difficulty they have in finding even someone to provide a couple of hours of respite?  Do you read about the very high staffing turnover of caregivers in community homes (up to 45% in some areas).  Do you listen to families of people living in family homes about how many caregivers they interview and hire each year to help with caregiving in the home?   Do you hear the parents who cannot work or who have lost their job because they have used too much “sick” time because they cannot get another caregiver?  Do you hear the families who are bankrupt or struggling financially because they cannot get help caring for their child?  Do you hear the families who use the ER or have to have their child admitted to the hospital for crisis care – the only “respite” those families receive?

It does not appear that The Arc hears these voices – if you did, it would be negligent to increase capacity of this residential population, particularly of those who need high supports, which would then over-tax an already under-funded and under-staffed community residential service system.

I have never heard that one is “too disabled to live in the community” from a person who advocates for a continuum of care, including living in a supportive community.  You’re right, no one is “too disabled” but there are people who do require a team of support people to keep them safe and healthy.  Sure, with unlimited funds, everyone could live in a residential neighborhood – but that is not the reality.  Our funds are limited.

As Lance said in the October 23, 2012 DD Task Force meeting, his son was able to live at home for 17 years with the help of 19 hours a day of licensed nursing care.   I’m very happy that their family had this opportunity but this is not a cost effective system to manage a large number of people who may need this level of nursing and caretaking support.  If all those in the supportive communities chose to live in a neighborhood residential home and required this high level of support to survive, would our state be able to financially handle that?  I know it wouldn’t.  So why then, does The Arc advocate for this type of residential service (which is clearly more expensive than a supportive community) and then say that those in the supportive community are taking more than their share?

It should really be the opposite – our state should be thanking those who choose to share services, and thanking those who choose to live in a supportive community home for many reasons.  These communities have a track record of having a more stable workforce and the fact that many services can be shared among residents is much more cost effective system for those with high support needs.

These supportive communities are far from segregated – in fact, most of the residents who have homes in these communities are out shopping, going to school, participating in parks events, go to church, attend neighborhood and city functions and more.  You just may not be aware of them because they have the support that they need to be out and about – unlike people locked away in their “community residential” home because a caregiver did not show up for work or the staff is untrained in behavior management and therefore unable to take the resident out of the house, or some other reason.

Living in a supportive community allows one more freedom.  Many of our citizens of all ages and types voluntarily choose to live in some sort of supportive community for various reasons.  Why are our citizens with ID/D being denied this right to choose which community is best for them?  Isn’t this discrimination against them due to their disability?  Isn’t the Arc against that type of discrimination?  Apparently not since The Arc advocates, and uses public funds, to do just that – discriminate against our most vulnerable.

It’s time for a change – let people have the choice – true choice – give them the information, allow them to decide what is best for them.

Thank you,

Cheryl Felak, RN, BSN

Photo and link from

December 2012 Newsletter

 http://hosted.verticalresponse.com/437417/c96b185e8e/1461566135/cdb5bffe12/

The Arc o f King County receives publlic funds from King County and Washington State to share information and advocate for individuals with DD

The Arc o f King County receives public funds from King County and Washington State to share information and advocate for individuals with DD

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. (https://becausewecare1.com/2012/06/11/will-negligence-become-the-new-standard-of-care/)

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. (https://becausewecare1.com/2012/06/09/to-the-arc-and-other-community-advocates-for-people-with-intellectual-disabilities/)

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. (https://becausewecare1.com/2012/06/14/how-can-we-have-stability-and-sustainability-with-up-to-45-staffing-turnover/)

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.