Do You Need Respite?

The instructions below are for those in Washington State – I would assume there would be a similar process in other states.


 Remember “Allowed” services DOES NOT mean “Approved” services.  History has proven that DDD does not typically approve allowed services on the first round.

Parents and guardians must fight for approval of services.  One more issue that adds to the crisis of the family.


1.  Contact your case manager to inform them of your needs – all must start here!  Links below are to policies and worksheets

Respite Care Pre-Screening

Respite Assessment Worksheet

Respite Application – Staffed Residential

Planned and Emergency Short Term Stays

Community Residential Services Referral and Acceptance


2. If denied, ask for a fair hearing.  This will give you a change to plead your case before an administrative law judge.  This process takes awhile.

3.  If still denied, take your case to your legislator and ask for their intervention.  At DDD only the director can admit someone to an RHC.  Your legislator needs to contact the director for information and make a request for placement.

4.If you don’t have time to wait for a fair hearing, go straight to your legislators


DDD Policy Manual


Need Help?  You may contact this author or ActionDD at



No Paid Caseload

The Washington State Developmental Disabilities Council  (DDC)  undertook the task of sending a survey out to those in our state who do not  receive any paid services through the Division of Developmental Disabilities.   Click Here to View Report “A Troubling Tale”
This is indeed a very troubling tale.  I fully understand the  issues from a first-hand experience and know crises that many of these families  are feeling.  I hope that people read this report and understand the  implications. 
With other reports coming out regarding the need for respite  care ( and families telling their stories, we can collectively manage some solutions to the problems.  The problem is not only among the “no paid caseload”  but is widespread throughout our communities.
Below is an excerpt of a letter that I have sent to Ed Holen,  Executive Director of DDC and Sue Elliot, Executive Director of The Arc of  Washington.  My hope is that the lack of services to those on the “no paid  caseload” is not used inappropriately by dividing the community into the “haves”  and “have nots”.  We need to unite to support a continuum of care which is  based on assessed support needs of each individual to enable them to function  optimally.

“The report on “No Paid Services” is extremely important and shows  such a critical need. This is very concerning for several reasons.

I fear  that this report will be used inappropriately by stating that those who reside  in the ICF/ID take more than “their share” of the funds and that is part of the  reason that there are so many on the “no paid services.” If this tactic is  taken, it only adds fuel a terrible fire which is not based on the  facts.

People may also take this to mean that those who do receive a  waiver receive all their needed services – this is again not true. There is a  huge difference between what an “allowed” service is and what is “approved.” In  our case having prescriptions from our son’s MD, referrals from his OT/PT,  hospital discharge recommendations were not enough for DDD to approve an  “allowed” service or piece of equipment or environmental adaptation. We were  told that DDD only paid for “needs” not “wants” yet why is DDD the one deciding  equipment or services MD, OT/PT and Psychologist prescribed were not needed?  This just mystifies me.

Another question that I have is that of medical coupons (I believe  they are called something else now – Provider One?) When our son was first  placed on paid services he had a CAP waiver (?) and with this he did receive  medical coupons which was not determined by our income. Where does this service  come in now? Do people on HCBS waivers automatically receive Provider One  Medical Coverage? Do those on the “no paid service” receive this?

As a family that has luckily survived – but only through the  finally allowed and approved services of the ICF/ID – I can tell you that the  two services that we had and were “approved” to use were Family Support funds to  pay for MCP and medical coupons which paid for diapers and the co-pay of very  expensive prescriptions, hospitalizations and medical costs. The services that  our son was “allowed” on his waiver were never “approved” and therefore he was  not able to access those services.

A study that I think would also be helpful is one of people on  waivers and if they are receiving the allowed services.

Again, thank you for undertaking this survey regarding the “no  paid service caseload” – I only ask that it be used without the biases attached  to differences in ideology. We all need to support a continuum of care which is  based on the assessed support needs of each individual to allow each person to  function optimally. “

Any  Comments or ideas?

Support HB 2150

Please support HB 2150

This bill is geared at raising revenue which will be put into a fund to provide for  vendor rates and oversight of community residential service businesses.

Our community residential services for people with an intellectual disability are crumbling.  The devastating cuts have already reduced the low wages of the direct support professionals  (DSP)who provide the daily care to some of our most vulnerable citizens.  We rely on these DSPs to safely care for our loved ones and we need to support them in their jobs.

There is currently at least a 40% turnover rate among DSP – most likely due to the low wages and incredibly challenging work. About one third of these employees work a second job (as reported on TVW January 11, 2012 Public Hearing at House Ways and Means Committee) or work overtime due to staffing needs.   This staffing turnover leads to greater instability in the workforce.  Without a properly trained and rested staff, our family members suffer.  This then leads to injuries – both to staff and residents.

King County DSPs make about 61 cents more an hour than DSPs in neighboring counties.  This disparity causes a problem in the neighboring counties since staff will travel to King County to work and if needed to work overtime will generally opt to take the overtime in King County and call in “sick” to work in neighboring counties.  This causes undue stress to residents and also a higher turnover rate in counties which neighbor King County.

Cost of care as reported by each agency and DSHS payments to each agency based upon support needs of residents

Please encourage your legislators to vote for HB2150 – this will help our state in living up to our Washington State Constitution – Article 13 as shown below.

Washington State Constitution

Article 13




SECTION 1 EDUCATIONAL, REFORMATORY, AND PENAL INSTITUTIONS. Educational, reformatory, and penal institutions; those for the benefit of youth who are blind or deaf or otherwise disabled; for persons who are mentally ill or developmentally disabled; and such other institutions as the public good may require, shall be fostered and supported by the state, subject to such regulations as may be provided by law. The regents, trustees, or commissioners of all such institutions existing at the time of the adoption of this Constitution, and of such as shall thereafter be established by law, shall be appointed by the governor, by and with the advice and consent of the senate; and upon all nominations made by the governor, the question shall be taken by ayes and noes, and entered upon the journal. [AMENDMENT 83, 1988 House Joint Resolution No. 4231, p 1553. Approved November 8, 1988.]

Original text — Art. 13 Section 1 EDUCATIONAL, REFORMATORY AND PENAL INSTITUTIONS — Educational, reformatory and penal institutions; those for the benefit of blind, deaf, dumb, or otherwise defective youth; for the insane or idiotic; and such other institutions as the public good may require, shall be fostered and supported by the state, subject to such regulations as may be provided by law. The regents, trustees, or commissioners of all such institutions existing at the time of the adoption of this Constitution, and of such as shall thereafter be established by law, shall be appointed by the governor, by and with the advice and consent of the senate; and upon all nominations made by the governor, the question shall be taken by ayes and noes, and entered upon the journal. (Washington State Constitution)


Yes, in answer to those who accuse me of many horrible things  – I am biased – biased towards safe, quatlity and cost effective care for our citizens with Intellectual Disabilties.  What I find funny in an ironic way is that some of these people accuse me of the exact opposite of what I am doing.  I often wonder where they are getting their information or where they learned their math and logic because they just don’t make sense.

I do not think that people or systems are prepared to care for people with the highest support needs.

I feel like a broken record in trying to communicate and break down walls of those who have been led down the wrong path by brainwashing.  If people would stop, listen and think, I believe that we could come up with a system that really does support a continuum of care – a system which best serves each individual with their assessed support needs in a safe, quality and cost effective manner.  I’m afraid to say though that until the propaganda is questioned enough and people begin to hear other opinions and issues, it may be long haul for us.

I only hope that no more innocent people will lose their lives while we are trying to figure it out.

Cost of Care by Support Needs, nursing and some medical care included

DD EMIS Data for Home and Community Based Service Waivers




Thomas is in VOR National News

Thomas has made national news reporting –

 He was featured in the VOR weekly update.

The Face of VOR

4. Thomas’ Story ——————————————- By Cheryl Felak, RN, BSN * Seattle, Washington * Dec. 31, 2011

Related Audio: From Crisis to Stabilization – Thomas’ Story  

   Thomas is my son. He’ll be 18 years old in February 2012. He has an extremely rare genetic disorder which is neurodegenerative and has early onset dementia. Throughout his youth, he has had many prolonged hospitalizations in the inpatient psychiatric unit at a children’s hospital.  Due to his developmental disabilities, they really didn’t know what to do with him.  They didn’t know about personal care. When he was 14 years old, he came home from one hospitalization with such extreme skin breakdown that it took about 5 months to clear up.  Even with a 1:1 aide in the hospital setting, they were not able to provide for his personal care adequately.  I would often arrive to see him with food on his face, food down the front of his shirt, teeth not brushed or a diaper that needed to be changed.  In the hospitals the staff are not trained to care for DD patients and particularly on the psychiatric floors where children who are dually diagnosed (mental illness/developmental disability) tend to be hospitalized.

    Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home.  It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police. 

   Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home.  We have also had to file for bankruptcy.  Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.

   When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You’ll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping.  I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.

   The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, “If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?”

   This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.

  Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others.  I founded “Because We Care – Beyond Inclusion” as one way to help.

Children’s Mental Health and Developmental Disabilties

After watching the House Health and Human Services Appropriations and Oversight Committee Work Session from December 1, 2011, I really saw that the mental health folks are much more aware of the cross systems issues and the problem with “silos” that the DD folks seem to be unaware of.  DDD really needs to look again at the services that their clients receive and share accurate data.  The data they share is so full of inaccuracies that those who use DDD and DSHS data as their facts (The Arc Chapters) are only hurting the very people who they are advocating for.


This is clear by the crisis that we have dug ourselves into.  There was NO cost savings from closing Frances Haddon Morgan Center as many were led to believe.  Now instead of using that “savings” for more in the community setting, those who are in the “community” settings are going to lose even more – This treatment is inhumane and is done by the very agency that is set up to protect our most vulnerable.


I wish that members of the The Arc chapters would look at some of the data that I have been able to gather and realize that what DDD is giving them is misinformation.  Rather than censoring me or accusing me of abuse because I have questioned the DDD and DSHS reports, it would benefit all of us if someone would actually look at this data and realize that what I have is critical information.


The fact that my questions to the authors of some of these reports and the administrators in DSHS and DDD are not answered  should be a big clue that there is information there that they do not want to acknowledge – I would assume because it would show that they are not being truthful in their approaches to policy.  If they were , I believe they would gladly answer my questions or at least tell me that I’m wrong.  I’ve not heard that I’m wrong either.


If anyone would like that data, I’m more than willing to share.  The more who are aware of this and who understand it, the better for ALL people, with and without developmental disabilities.


I will be posting another letter with some very specific questions that DDD and DSHS need to answer.

Resident hours per day charts


Thank you,

Children’s Mental Health and DDD – House Health and Human Services Committee

Please read the attached letter regarding issues raised during the December 2, 2011 work session for the House Health and Human Services Appropriations and Oversight Committee.

There were some interesting issues raised and I learned that the people in the Mental Health/Behavioral Health services are much more aware of the impact of the silos and how these silos make it impossible to treat a person across systems.  The Division of Developmental Disabilities needs to start to realize this and come to the understanding that most of the clients in DDD DO receive services from other DSHS programs.

December 2 Letter

Please Ask DSHS and DDD These Questions!

This letter was sent to all Washington State Legislators and many other advocates.  I do hope that these questions are asked and that answers are received.


december 1 letter to legislator and others


The Department of Social and Health Services and the Division of Developmental Disabilities NEED to answer these questions and more.  The data that they continually present to our legislators is flawed and incomplete and doesn’t tell the whole story as it needs to be told in order to make policy decisions.


This is who we need to ask questions of:

DSHS – Aging and Disability Services Administration Tree

Susan N. Dreyfus, Secretary

Department of Social &  Health Services


Don Clintsman

Division of Developmental  Disabilities

Aging & Disability  Services Admin



Janet Adams

Office of Quality Assurance and Self Directed Services



DDD Costs of Care and Decisions which cost lives

Some decisions have been made which have cost people their lives – I’m hoping that before anymore lives are lost or hurt, our legislators will be given accurate data upon which to base their decisions.

This has not happened in the past due to ideology gone awry.  The cost reports for the care for our citizens with developmental disabilities has been falsified and reported inaccurately.  As a start to this, I have prepared the attached letter – it has a few charts and examples of where this reporting has really missed capturing the costs of care for some of our citizens with the highest acuities who chose to live in small community homes.  Remember, this is not the choice for everyone.

The RHC is the most COST EFFECTIVE environment of care for our citizens with the highest acuity.  Why, in times of budget crisis would people allow these misleading cost reports to guide them is beyond me – not only are we ending up spending more for less care but fewer and fewer people will be able to receive care too.

Please read the letter –  Comprehensive Cost comparison

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.