Tag Archives: The Arc of King County

Public funds used to discriminate – The Arc of King County

There has been a long-standing issue with regards to advocacy by The Arc of King County.  The Arc of King County has a contract with King County Department of Community and Human Services, Developmental Disabilities Division, which provides thousands of public dollars, both county and Washington State funds, to The Arc of King County to fulfill advocacy, outreach and support to people with developmental disabilities and their families.

The Arc of King County discriminates against people and their families who may need the full continuum of care support needs provided in our state operated residential habilitation centers.  These supportive communities provide an intense level of support in the most cost effective and safe way to some of our states most vulnerable citizens.  The Arc of King County does not support any form of congregate care and therefore uses their personal and corporate biases in violating the contract they hold with King County.  In essence, they are using our public funds to mislead and misinform people.

It is perfectly fine for The Arc of King County to not support congregate care but they need to be upfront and honest with that bias and allow others to share information and education regarding these supports.  Censorship is regularly used by The Arc of King County to prevent families from sharing information regarding the needs of people who may desire the community supports at the residential habilitation center.

The Arc of King County denies access to Facebook pages, Websites and public blogs to people who may support a full continuum of care.  This is violates the contract they hold with King County.

Please write to your King County Councilmember informing them of these violations and inappropriate use of our county funds.

The Arc of King County Contract with King County 2012

The Arc and King County Contract with highlighted boxes

The Arc of King County and Social Media

king county funds to The Arc of King County

 

 

 

Self Advocacy and The Arc of King County

“You do not have my permission to use my picture or any image from our publications, website, blogs or Facebook.

Sylvia Fuerstenburg (Executive Director, The Arc of King County)

given the above restrictions put on me by the Executive Director of The Arc of King County, I cannot put a link to her blog on my site.  The name of the blog is Sylvia’s Blog and there is an entry on March 4, 2013 regarding self-advocacy to which I have attempted to post a comment.  My comment is below but may not be posted to Sylvia’s Blog as it may stay under “awaiting moderation” so that it will not be visible to others who may read the blog.

Cheryl Felak on March 5, 2013 at 7:48 pm said:  This post was not approved and was removed from the website.  I have therefore attempted to post again  - see note below:

Your comment is awaiting moderation.

I fully support the work of self-advocates but I also have some serious questions regarding self advocacy for those who are not able to be their own advocate. I believe The Arc assumes that everyone can be their own self advocate if they have the training to do so – as evidenced by the quote ” Becoming a self-advocate simply means protecting one’s own self-interests — demanding re­spect, reaching out for the services and supports needed to fully participate, and simply making others aware of what it means to be a person with I/DD. When you empower yourself in this way, you can then empower others to join in the cause with you.’

My reality and the reality of many who I know and work with, being their own advocate is something that they cannot even comprehend. This is why they need others to advocate for them and why they need guardians to help protect them. Are you saying then that the people who advocate for those who are unable to be their own advocates are not needed? How does The Arc value the concerns and work of these advocates who advocate on behalf of our most vulnerable who are unable to be their own advocates?

When a person has no concept of personal safety, how to stay safe, what they may need to manage their own personal care, is unable to figure out out to get things they may need for food, shelter, personal safety, and without someone there to help them every day to maintain their health and safety, how does The Arc envision teaching these people to be their own advocate? What if these people cannot voice their concerns? What if these people do not know what they need?

I do not see these issues addressed in connection with self-advocacy and I would really appreciate knowing how The Arc and self-advocacy groups address these issues and how they view the advocates who work on these people’s behalf.

 

I fully support the work of self-advocates but I also have some serious questions regarding self advocacy for those who are not able to be their own advocate. I believe The Arc assumes that everyone can be their own self advocate if they have the training to do so – as evidenced by the quote ” Becoming a self-advocate simply means protecting one’s own self-interests — demanding re¬spect, reaching out for the services and supports needed to fully participate, and simply making others aware of what it means to be a person with I/DD. When you empower yourself in this way, you can then empower others to join in the cause with you.’
My reality and the reality of many whom I know and work with, being their own advocate is something that they cannot even comprehend. This is why they need others to advocate for them and why they need guardians to help protect them. Are you saying then that the people who advocate for those who are unable to be their own advocates are not needed? How does The Arc value the concerns and work of these advocates who advocate on behalf of our most vulnerable who are unable to be their own advocates?
When a person has no concept of personal safety, how to stay safe, what they may need to manage their own personal care, is unable to figure out how to get things they may need for food, shelter, personal safety, and without someone there to help them every day to maintain their health and safety, how does The Arc envision teaching these people to be their own advocate? What if these people cannot voice their concerns? What if these people do not know what they need?
I do not see these issues addressed in connection with self-advocacy and I would really appreciate knowing how The Arc and self-advocacy groups address these issues and how they view the advocates who work on these people’s behalf.
I’m also very curious how The Arc addresses the issues of the incompetent person as defined in Washington State Law and guardianship. By definition of one’s disability and functional abilities some people are not able to make safe choices and by court order are unable to make those choices. How does The Arc address these people with regards to being a self-advocate?
The court realizes that some people are unable to make safe decisions and the court has taken steps to ensure there is a person who will make those decisions on behalf of those who are, by definition of their very disability, legally incompetent. This makes them dependent on their parents/guardians to represent them. Why does The Arc seemingly discriminate against court appointed legal guardians to advocate on behalf of their ward?

 

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

The “unserved” – King County Legislative Forum

The Arc of King County and King County Developmental Disabilities Council hosted the recent Developmental Disabilities Legislative Forum.  The theme of the evening was “The Unserved.”    Yes, this is a huge issue but an even larger issue was the blatant discrimination against our most vulnerable citizens by The Arc of King County and Lance Morehouse, Outreach Coordinator and Advocacy Coordinator King County Parent Coalition, The Arc of King County.

Morehouse refused to allow two groups to speak at the forum stating there were time limits and a change of focus of the forum.  Make no mistake about this – these groups do serve the” unserved” and that is part of their focus but they were denied a chance to speak due to their advocacy for a continuum of care.  The Arc is opposed to any congregate care and therefore discriminates against those for whom this care is the LEAST RESTRICTIVE,  safest and cost effective care for those who chose this type of care.

The Arc of King County receives thousands of county and state public dollars every year for outreach and advocacy, parent training, parent to parent, and many other services.  The Arc uses some of these public funds to discriminate against our most vulnerable, censor information from advocates for a full continuum of care and block information which may be life-saving to some people with DD or their families.

It is time to question these practices which are paid for with public funds.

Below is a link to the letter which I wrote to members of the King County Council and legislators from King County.  I do hope that this issue will be taken seriously and these decision makers become aware of the publicly funded discrimination against our most vulnerable and their advocates.

Letter regarding King County and State dollars to The Arc of King County

Letter from Friends of Fircrest to Legislators regarding their exclusion from the DD King County Forum

Letter from Shoreline Community Lifelong Learning PTSA President regarding denial to inform legislators of this new community group

King County Developmental Disabilities and public funds to The Arc of King County

19 hours a day

Lance Morehouse, Outreach and Advocacy Coordinator from The Arc of King County Parent Coalition for Developmental Disabilities, stated the following on September 25, 2012  as a member of the Developmental Disabilities Service System Task Force in Washington State. 

 

Lance (From The Arc of King County):”The comment about people who are more complicated or more profound being served by the RHC, I’d just like to ask Don really quick,  I think the data that I’ve seen has shown that the majority of the people ,Lance, Jr. had 19 hours a day of nursing care in our home and he lived in, it wasn’t an RHC but a children s  home in Spokane for the first year and a  half after he passed away and my experience was he almost passed away before we were able to bring him home but he lived another 17 years in our home with the nursing care, but isn’t there data that shows some of the people with the most intensive health care needs are living at home with their families?

Don (From DSHS):  ”That is accurate.”

 

My questions and comments are:

1.  No one has said that those with significant disabilities and high support needs cannot live in a community residential setting.  

2.  Did anyone hear what Lance said?  His son had 19 hours of licensed nursing care in their home for 17 years.  Has anyone wondered what our state paid for that care?  

3.  Lance is quick to point out that the care in the RHC is expensive and that there are many in the community with no services.  

4.  How can one talk about the personalized care in an individual’s home and stating that we need to have more people utilize this expensive care (when those same people are content to share services in the RHC at a lesser cost to our state) and then go on to talk about all those with no services and that the people in the RHC are taking more than “their fair share”  

5.  Are not these issues logically opposite?  

6.  What happened to the concept of sharing services for the better good of all?  This is exactly what those who choose to live in congregate care are doing.  They are saving money and resources by sharing with others.  Why is this so wrong?  

 

 

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 

Scott Livengood – CEO of Alpha Supported Living and Legislative Committee Co-Chair of Community Residential Service Association

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. (http://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. (http://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. (http://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.

 

 

To The Arc of King County – HELP!

A letter from another mom – families such as ours are shunned and dismissed by The Arc.  It’s such a shame – people are not aware that the Arc does not advocate for those who have the highest support needs or for those who need the support needs of a Residential Habilitation Center.   My dream is to have a united advocacy for ALL people with intellectual disabilities – an advocacy group which understands the continuum of care services model.

Here is what the ARC is banning (written my another mother of a child with autism who is 21 and aging out of the school system – no program available for him next year)

Dear ARC,

I recently returned from Hawaii with my husband Denny and while we were there we stopped in at the Hilo ARC to see what type of services that they offer. I was really so pleased to find that they have an Adult Day Health Program, Personal Assistants Program and Commercial Services  .We were greeted by their wonderful executive director who explained how they run their adult programs on a very limited budget yet have quality programs.  I believe we could replicate something similar for adult day programs here. If the ARC of King County really wanted to help families who desperately need adult services this a good place to start.

This is how the Hawaiian Hilo ARC does it.

Referrals for the Hilo day program come from a DSHS caseworker. When a family calls and needs a day program for their adult child the caseworker calls the ARC to register the adult child. If a family needs one on one for their adult child at the day program the ARC will provide it. Their adult day programs are from 7:00 to 2:00 Monday thru Friday. Talk about great respite! The best part is that the adult day programs are free!

ARC of King County we need to actually do something for our community and stop the ongoing slam about Fircrest. We must move forward to also set up programs like the ones in Hilo Hawaii.  As we all know families whose 21 year olds are now about to graduate from High School really have no future and this must change. ARC you have a large talented staff that could easily put together programs like the ones in Hilo.  ARC I bet you can start day programs for adults by this summer.

ARC of King County please let us parents know if you are willing to help us moms, Dads, and loved ones with opening up adult day programs.  ARC if the answer is no
Please explain to us why. I will not take, that you do no have funds for supporting your members. I just don’t believe it.

Let’s stop the talk and start The ARC of King County an Adult Day Health Program, Personal Assistance program, and commercial services program. Just like the ones at the Hilo Hawaii ARC.

http://www.hiloarc.org/ourwork.html

King County Parent Coalition for Developmental Disabilities – Please Respond

Dear King County Parent Coalition Members,

Please read the attached letter and respond.  I have some questions regarding what you are advocating for regarding the closure of Rainier School.

November 28 letter to KC Parent Coalition

I would like to point out that this is not about RHC versus not RHC - it’s about people with DD.  When advocates are going to talk about closing a facility and state there are savings (which there are not) and also say these supposed savings will help with other DD programs, we end up with more of a the same crisis that we are currently in – where the folks who are out in the community lose their services.

The Arc (and others – including the DDC and some DDD administrators)  needs to come to grips with the fact that closing and/or consolidation of the RHCs (whether or not they agree with them or support them ideologically) is NOT a cost-savings measure.  To use this as an argument to encourage others to agree with in hopes of preserving services is a great disservice to ALL people.

So, whether one might ever use the RHC services or not, the RHC issue affects all of us.  This is a critical issue that is falsely represented in order to push an ideology that can not be sustained safely or financially.

Thank you,

Cheryl Felak

Questions for Sylvia from The Arc of King County

I’m posting this in hopes that Sylvia Fuerstenberg will see this and respond.  She does not respond to my email inquires.   I sent her this email today.  I have questions regarding the Certified Residential Support Program Cost Report (2010) that The Arc of King County Submitted.

 

 

Deinstitutionalization – Risks now outweigh Benefits

More horrible budget news today and I really don’t know what to say – how much more can we take?  People are already dying due to this crisis and the plan that Governor Gregoire put out today guarantees that more of our precious loved ones will die.

I am also continually shocked by the misinformation that our Governor is basing some of these disastrous decisions on.  Most notably is the false information that closing our Residential Habilitation Centers (RHCs) will save money.  The reality is that this will cost more money and more lives.  We have already experienced this in the process of closing Frances Haddon Morgan Center this year.

There has been one documented death so far.  There have been several injuries to residents and many of the residents who have transferred from Frances Haddon Morgan Center to Fircrest are experiencing difficulties.  It’s not only the residents who have transferred but the residents who were already living there are experiencing increased anxiety and behavior issues.

I cannot imagine what many people who are living in community homes must be feeling – fearing for their lives with no safety net there for support.

I have attached a chart which documents true costs of care in a variety of settings.  This data is taken from the DSHS EMIS report for December  2009 –  Dec 2010.  The data for the Supported Living Programs is taken from the Certified Residential Care Cost Reports that each agency must submit every year to DDD.  These are the 2010 reports.

Some very interesting data is clear:

The RHCs are THE MOST COST EFFECTIVE and COMPREHENSIVE care for some of our most vulnerable citizens.  This chart does not even include the cost of food, healthcare and most habilitation services for our citizens with disabilities.

Take a look and see – let me know if you have any questions.  Cost of Care Measure

Opinion published in The Stand Risks of Deinstitutionalization now outweigh benefits

It is also interesting to note the profits that many of these agencies make.  It would be great to use some of that money for improved services to more people.