The Arc of King County – King County Family Coalition

Change is hopeful.  The Arc of King County/King County Family Coalition has posted a job opening announcement for the Advocacy and Outreach Coordinator.  (KCFC Coordinator Job Description)  My hope is that whoever is hired for this position can truly see there is a need for a continuum of care and that we all need to work together for the betterment of the whole.

I hope the new coordinator will be willing to have open and frank discussions with all families without ostracizing those with the highest support needs;

I hope the new coordinator will be willing to tackle reviewing the newest data and research regarding family quality of life;

I hope the new coordinator will be willing to talk about health and safety issues;

I hope the new coordinator will be willing to acknowledge that some people choose to live in supportive communities and this choice needs to be honored and respected;

I hope that the new coordinator will see that those with intellectual disabilities are not a homogeneous group that can be lumped into one category;

Most of all, though, I hope the new coordinator will honor and respect the choices of those with intellectual disabilities, their families and guardians, in making the choice that is right for them.

All this can be done within the framework of the Arc’s mission and I am hopeful that the new coordinator will be able to make this happen.

 

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

DD Service System Task Farce

So far I have learned that the task farce is not interested in facts – they refuse to look at real data or question the same recycled and inaccurate data which has been used over and over again for years – the very same data which has escalated the care crisis for our citizens with developmental disabilities.  Below are some of my observations:

  • There is no concern for escalating costs for programs which are new and untested which will serve less than 6 clients a year.
  • There is no awareness that the cost for high support needs clients in the community is much higher than the cost for a similar person in the Residential Habilitation Center (RHC).  Yes, we all know that there are many which very high support needs who live successfully in the community – but their costs are also high.  Lance Morehouse, Outreach and Advocacy Coordinator for King County Parent Coalition stated during one Task Farce meeting that his son lived at home for 17 years with the help of 19 hours a day of licensed nursing care without blinking an eye with regards to stating how he cares about all those without any services.   Am I missing something here?  How can one proudly state that they used that many service dollars (certainly much more than the daily cost for a client in the RHC) and then complain that the clients in the RHC (who gladly share services) are taking more than their fair share – doesn’t make sense to me.
  • There is no awareness that sharing services saves money
  • There is no awareness that people have a choice as to what the least restrictive environment for them is
  • There is no adherence to Olmstead with regards to choice, least restrictive environment or cost to the state.
  • It is not a concern that there is a huge lack of oversight in community residential settings
  • Even though our state has space and capability to provide services on the RHC campuses for those in community settings, the fact that it may take some” work to figure out an accounting system” seems daunting – yet on the other hand DDD has worked on building a program from the ground up with many unseen problems with a seemingly  limitless budget to service just a handful of clients.  This program will be experimental.  Is this a less costly and less labor intensive project than figuring out an accounting system?
  • Senator Adam Kline pushed his bill through the legislature based on inaccurate data and prematurely closed off services to our youth – yet he states he cares?   How can that be?

 

I realize that those in the driving seat will do whatever they want with little regard for facts or human lives at stake.  I find these actions negligent and inhumane.  Do they even care about the harm they are doing?

In order to change the name from DD Task Farce to DD Task Force, this group will have to look at accurate data.  I wonder if that will happen?

As many of you know we are in the midst of our DD Service System Task Force (or should I say Farce?)

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?  

 

 

If you choose premium, you also choose to pay more for premium

I really hate to get into this topic because it will could be detrimental to many in the community and I really do not want to force anyone out of their home – but given that, I believe it is important for you all to know what the actual costs of care for people with high support needs is.

Yes, it is true that there are many in the community with high support needs.  I would ask you all to ask Don Clintsman or Mark Eliason to gather the daily costs for these clients and what those costs cover.  This will most likely be direct care only since that is the majority of the costs that DDD pays for.

The folks in DDD and DSHS can easily acquire this information.  They know who is the most expensive and what their costs are.  Rather than looking at the “average” for all on the waiver, look at the costs for those with the highest support needs.  I believe when you receive this information you will have a much clearer understanding of what the costs are in the community for those with high support needs.

Listen again to what Lance Morehouse said on September 25.  He stated that with the help of 19 hours a day of licensed nursing care his son was able to be at home in the community.  Now try to imagine what the cost of care for him was.  Surely it was much higher than the average cost of care for COMPREHENSIVE care in the RHC.  Just because a person with high support needs can live in the community does not mean that it is equitable and fair and if you want to talk about rationing costs and services, look at these folks too.

If families chose to use community care which is more expensive for those with high support needs, should they not be expected to pay a little more too?  Why would this be any different than how insurance companies pay a percentage?  Or when you want premium gas you have to pay a little more.  I believe if you are choosing “premium” then you are also choosing to pitch in a little more rather than taking more of your share because you can.

This is what I talk about when I say that community care for those with high support needs is more expensive in the community.  If the issues are about cost, then this issue really needs to be looked at accurately.   I would love to see a graph of the numbers of people in the community settings by their average daily cost connected to their support needs.

I do not like to talk about this issue this way because I believe it may be hurtful to many and I would never wish to force someone out of their environment due to the cost.  A human life is priceless. We do need to think about finite resources and how to share those resources better.  We hear so often that those in the RHC are taking more than their fair share but what about those in the community with high support needs?  No one talks about the piece of the pie that they are taking.

In WAC 388-845-0110 regarding limitations of the Home and Community Based Service Waivers it states:

(4) The cost of your waiver services cannot exceed the average daily cost of care in an ICF/MR.

Taking this information into consideration, I would be interested to know how many of those on the waivers have a higher daily cost than the average cost of care in the RHC. When thinking of this it would also be good to keep in mind that this would only be the DDD costs which would be mostly direct care costs.  Therefore, those in the community could have a higher cost for direct care because the average cost of care for the RHC is all-inclusive.

So, when looking at this, I wonder about what is really being spent on individuals in the community.  Is there a way to divvy up the resources that are already there to better share those equitably?  Maybe use a cap of the average daily RHC rate as the WAC states rather than let the costs for individuals get out of hand.

I fully support community care and I also have to think about sharing services so that more people can have services.  That means that some will have to go without some of the services they have had and they may need to look elsewhere for some help but it also means that there will be more to share with those who are not receiving anything.  Isn’t this the fair and equitable way?

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