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” http://www.king5.com/story/news/local/investigations/2015/11/03/washington-state-developmentally-disabled-residential-habilitation-center/75065984/
  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

References

“CMS – 64 Quarterly Expense Report.” 2012. <https://www.cms.gov/Research-Statistics-Data-and-Systems/Computer-Data-and-Systems/MedicaidBudgetExpendSystem/CMS-64-Quarterly-Expense-Report.html&gt;.

“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. <https://www.census.gov/popest/data/national/totals/2014/index.html&gt;.

We “institutionalized” our son at age 15

Before you condemn me for this decision and tell me that we could have done something else, I would like you to read my statement below.

Unless you have had a shared experience, you may not understand what families such as our face in trying to manage our kids safely at home with few, if any, adequate supports.  I believe this situation will get worse before it gets better since many will have to experience this to understand the mistakes they have made in advocating for closure of institutions which provide comprehensive and safe care to our most vulnerable citizens.

First, I will make one assumption and then state 2 facts.

Assumption:  we all agree that stability and sustainability are better than chaos and crisis.

Fact 1:  Community Intermediate Care Facilities for people with intellectual disabilities (ICF/ID or ICF/DD)  in Washington state do not have nursing or nurse delegation available for the residents.  This means that for a resident to live there they need to be able to self-administer all their medications.

Fact 2:  Insulin is one of 5 “high risk” medications in a hospital setting.  This means that Register Nurses in a hospital setting need to double check the dosage prior to administering insulin to any patient.  In community homes for people with intellectual disabilities, insulin injections are the only injectable medication that a non-licensed provider with nurse delegation is allowed to give.

I recently attended the 33rd Duncan Seminar at Seattle Children’s in Seattle, WA.  The topic was transitioning our special needs pediatric population into the adult world.  One pediatrician spoke, and though very engaging and informative, he stated “or you could just drop your kid off at Fircrest”.  Fircrest is one of our state’s 4 remaining Residential Habilitation Centers (RHC).

This is my letter to that pediatrician informing him of his error in judgment.

Dear Dr. ______

Thank you for your informative presentation at the Duncan Seminar.  As stated above, I greatly appreciated your information and sense of humor.  There was one comment you made though which I feel I need to address.  You stated “you could just take your kid and drop him off at Fircrest” or something very close to that.

My 18 year old son lives at Fircrest and we didn’t just go and “drop him off” there.  Our son has a genetic (most likely some sort of metabolic neurodegenerative disorder – geneticist and neurologist are still working on it – The Mayo Clinic and Emory Lab see  “something” in his genes but cannot yet pinpoint it) neurodegenerative disorder which causes not only Intellectual Disability but manic and psychotic episodes.  We are very involved in his care and he is very active in community events but Fircrest provides the stability and constant personal interaction which our son requires to maintain his orientation to this world.

We never imagined that we would place our son in any type of residential setting – in fact we even kept him home for birth-three since we didn’t want to “institutionalize” him and separate him from our family.  I believe to this day that it was the close interaction with me and our family in his early years which has helped him tremendously with his social and language skills.  We never thought he would walk or talk.  Actually, sometimes we wish he would now stop talking since it’s literally non-stop but if you ask him to be quiet he yells “I know how to talk!”

When the manic and psychotic episodes started and the crisis cycles started with multiple prolonged hospitalizations we and his care team knew that we needed to find a residential placement for him to keep him safe.  We found that there were no facilities in the area which were adequate – the IPU at Seattle Children’s, though able to work with his mania/psychosis were inadequate in working with his DD issues – even with 1:1 support they did not understand how to manage his personal needs (diapering a 14 year old for instance).  He was admitted to Swedish on the pediatric floor due to complications from dehydration/extreme weight loss from a manic/psychotic episode.  He was still manic with hallucinations and psychosis but also needed additional medical care. We were told to keep him in his room because he was scaring the other kids – this was literally impossible without scaring them more from hearing his screams from being confined.

After his 5th hospitalization in about 1 ½ years he had to be readmitted 3 days after discharge.  We sat in the ER for over 12 hours with the psychiatrist, social worker and nurses from the IPU in addition to the 1:1 security presence, trying to convince the RSN, who is the gatekeeper for hospital psychiatric admissions, to admit our son.  Finally, he was allowed to be readmitted but we were told the RSN would most likely not approve another admission because the treatment plan wasn’t changing and there was nothing else they could do for him.  That was absolutely true but it was the only safe place that we had for him and our family.  At the discharge meeting when I asked what we were supposed to do with the next crisis, the only solution was to call the police and take him to jail.

Our son was 14 at the time, was on a HCBS waiver and we and his treatment team had already requested placement at a group home or Fircrest.  DDD denied all these requests but told us to call the police.  This was a totally unacceptable solution to the issues at hand.  Luckily, we connected with a psychiatrist who understood us and our son.  She worked directly with us in trying to maintain our son at home.  This arrangement was supposed to be temporary while our son was on the “waiting list” for residential placement.  I inquired each month how the process was proceeding and was told “we’re working on it.”

Luckily, or unluckily, I sustained an injury which required surgery from caring for our son.  This then led to multiple life-threatening complications for me, my own cycle of hospitalizations and surgeries which then led to more crises for our son.  After 9 months of this, we found out that DDD had lost our son’s paperwork.  Due to my own health crisis and the deterioration of the rest of our family, we were able, with MUCH added stress and work, to have our son placed at Frances Haddon Morgan Center in Bremerton.

This was the best that DDD could do.  They had stated that our son (while in crisis) would have to go to Yakima first for “respite” then be transferred to FHMC.  We were able to talk them out of the Yakima stay and get him into FHMC.  This move saved his life and mine.  After a year and with many letters explaining the other health issues with me and my other children, we were able to have our son transferred to Fircrest – the RHC he should have gone to from the very beginning given that we live in the U. District and he has lived in North Seattle his whole life and knows Shoreline like the back of his hand.

Since moving to the RHC our son has been stable and has not needed to be hospitalized.  The RHC has the support staff that can provide stability and the constant personal interaction he needs in addition to managing his ADL’s and personal care.  Our son is very happy and loves his home and community.  I know many parents and family members of Fircrest residents who have similar stories and experiences.  The families today who need the services of the RHC are much different than years ago when people were left there and forgotten.  Yes, there are people there who do not have family or friends visit but the with the younger population, this is not the norm anymore.

I know that for our son a group home would not be safe for him.  The rapid staffing turnover and lack of back up for staff leads to safety problems which could be life threatening for our son and others that I know.  I believe that many developmental disability advocates have done a great disservice to our DD population by advocating for closure of institutions.  I wholeheartedly agree that this is not the first option nor is it the most appropriate option for most of the population but for the people who are there, it is the least restrictive and safest choice for them and their families.

Many people fail to understand the issues of dual diagnosis in our DD population.  For our family it was the onset of mania and psychosis from early onset dementia which led to us needing to think about placing our son outside our home.  Mental illness is difficult for those who do not have a developmental disability so just imagine how much more difficult it is to manage in the DD population.

We did not “just take our son to Fircrest and drop him off” because we didn’t want to care for him.  He is there for stability and his health and safety for the health and safety of his family. I think that we would all agree that stability and sustainability are much better than crisis and chaos.

Again, thank you for your presentation.  If you are interested in a tour of Fircrest to see what the institution is like today, I would gladly take you to visit.

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Hidden Costs, Access to Health Care, What are we to do?

I have attached two essays which help explain part of the problem of access to healthcare and hidden costs when people and agencies which masquerade as Disability Advocates push for the closure of the Intermediate Care Facility for People with Developmental Disabilities (ICF/DD).  These so-called advocates’ agenda is based on old school ideas and false information for today’s population.  The proposals they have will end up costing more, reducing services all around and hurting everyone.

 

Now is the time for some new thoughts and actions – please read the attached and post comments.

 

Thank you – Cheryl

Medical Home Essay

Hidden Costs of care

 

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute

DDD “No-Paid” Caseload, part 2

Many in our community are confused by terms that are used and what they actually mean.  According to DDD Administration, this is what I have learned regarding the DDD “No Paid Caseload.”  We need to keep the reality of what this term means in the forefront when looking at DDD and DSHS budgets and services which we provide to our community members.

To be eligible for DDD, one must meet the eligilitiy under  RCW 71A.10.020  Our state’s DDD agency reports the “Total DDD Caseload” in reference to the number of persons who have a current determination for DDD eligibility.

DDD eligibility does not mean that there are paid services.   DDD paid services are dependent on availibility of funding and/or eligibility for the specific services.  The Medicaid State Plan services and services to people enrolled in a Home and Community Based Waiver are not limited by availibility of funding but must meet the eligibility requirements for those programs for services.  Not all people with DDD eligibility meet those requirements.

For all other services, an individual must meet eligibility requirements as well as the division having funding available for the desired service.  DDD utilizes the CARE Assessment to determine whether the person meets eligibility requirements for a specific service.

Those who are currently receiving a funded service through DDD are referred to as the “Paid Services Caseload.”  Those who do not receive a funded service through our division, either due to lack of funding, not meeting eligibility requirements for a specific service, or not desiring paid services at the present time are referred to as the “No Paid Services Caseload.”  The Paid Services Caseload plus the No Paid Services Caseload comprise the Total DDD Caseload.

Also, the “No Paid Services Caseload” clients means that they are not receiving a paid service through DDD.  Many of the DDD clients do receive services from other programs within DSHS.  DDD does not keep track of nor have awareness of other services within DSHS that the DDD clients may be receiving.

Services Received by DD Clients in FY 2008

programs which DDD clients access

DRW Validates Concerns regarding Safe and Quality care in the community for RHC residents

 

Mark Stroh, Executive Director of Disability Rights Washington (DRW) has written a letter to Governor Gregoire protesting her veto of Sections 7 and 11 of SSB 5459.  Even though DRW supported SSB5459, I am pleased to see their concern regarding the Governor’s veto of these two critical sections which were put in to assure safe and quality care for our residents. 

 

Without these two sections, there are no commitments to ongoing services, continued safeguards, quality assurance and independent oversight for the health and safety of our residents. 

 

Thank you to Disability Rights Washington for validating the concerns that we, as grassroots advocates for a continuum of care for our citizens, have been highlighting in our statements to the public and our legislators. 

Please Listen to Us!

I am attaching some very interesting documents.  What I would love to know is if the Department of Social and Health Services and The Department of Developmental Disabilities are listening to the people they are serving.

To me, from looking at the Joint Legislative Audit and Review Committee (JLARC) DDD Assessment Report dated January 31, 2009, it clearly outlines the numbers of people and the programs and services requested.

JLARC Final Report 013109 DDD assessment

This is what I find very interesting and confusing:

Program Requests:

ICF/MR – 20

Roads to Community Living – 1

Service Requests:

RHC or ICF/DD services – 40

Roads to Community Living – 1

Looking at what was requested by the people, it is clear that the people are requesting the ICF/DD services much more than the Roads to Community Living Services.  Why then, is the Department downsizing the ICF/DD’s and putting thousands of dollars into the RCL program?  Why is the State of Washington spending over $250,000 on a “Family Mentoring Project” for the Roads to Community Living when it is clear that the people involved are not even asking for this? Is this being a responsible steward of our public funds? Is this being cost effective?

It is time to listen to those who really receive the services and programs – not those who masquarade as their advocates.  The people have clearly spoken and they are asking for the services in the ICF/DD’s.

Please Listen to Them!

Number of Programs which DDD Clients Access:

Number of progrmas which DDD clients access

Other DSHS Services Received by DDD Clients:

Services Received by DD Clients in FY 2008

Formation of Washington State Task Force to Look at DDD Services

Attached below is my letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities.  He had responded to a letter which I had written to MaryAnne Lindeblad, Assistant Secretary, Aging and Disabilities Service Administration, inquiring about the formation of the Task Force and the importance for a balanced perspective of the participants.

Dear Mr. Clintsman,

 

Thank you for responding to my letter to Ms. Lindebland.  It is hopeful to hear that the The Department of Social and Health Services and the Department of Developmental Disabilities finally understand the concept of and have adopted the term “continuum of care.”

 

We, as grassroots disability advocates have always stressed the importance of the continuum of care, realizing that each person needs to be looked at individually and their needs met according to their assessed support needs.  The only way to accomplish this goal and also accomplish it within a reasonable budget is to continue to offer the full continuum of care to all – regardless of their age group.

 

Once one realizes the critical importance of this continuum, I’m hoping that the budget figures and reports will more accurately be reported to reflect the true cost of care – especially for our most vulnerable citizens and those with high acuity levels in several areas. 

 

It has never been disputed that citizens with high acuity can be accommodated in neighborhood communities and it’s wonderful that this arrangement can work for many.  It is neither realistic nor safe to consider this the best option or even a viable option for many of our citizens who currently reside in the state operated residential communities or those who have requested admittance but have been denied access to these communities. 

 

Given the many constraints of resources – not only dollars – but people and housing, it only makes economic sense to utilize the concept of “scale of economies.”  This concept utilizes the fact that being able to serve more people with the same type of support needs and sharing some of those services within a community actually saves dollars.  Within these communities, the residents also receive their comprehensive health care – minimizing many transportation costs, emergency back up costs, and extra personnel costs used to transport residents to other appointments just to highlight a few examples of costs which are often forgotten.   The residents have much better preventative care and follow-up care, are not traumatized by being “taxied” around town for various appointments such as lab draws, xrays, dental exams, eyeglass fittings, etc. 

 

I will highlight one example of a woman in her mid 30’s.  She lives in a supported living arrangement, has cancer and many other health related problems.  She came through the department in which I work to have her port-a-cath changed due to mismanagement and infection.  This is very unusual to need a port-a-cath replaced, particularly if the first one has only been in a short while.   This woman presented in surgery, unaccompanied by a guardian, unable to comprehend all that was going on.  She had missed many of her scheduled doctor’s appointments related to not only her cancer treatment but preventative and follow-up care for other health issues.  It is stories such as this that I see as totally preventable when a person lives in a residential community with comprehensive care.  What budget does the cost of her care due to mismanagement of her health problems get attributed to?  This doesn’t even take into the account the effects of pain and suffering to this woman. 

 

I know from  looking at many sources which DDD and DSHS provide regarding costs of care, services requested and provided and even the cost of care for the 30 highest cost DDD residents  that you provided to me, the figures that have been used for cost comparison are extremely inaccurate with missing costs, cost shifting and data input errors.    Data that was used for these cost comparison reports was taken from reports with many inaccuracies – therefore, the data pulled is essentially useless if getting an accurate assessment of the cost was the goal.   

 

 

In addition to the issues of safety for our residents, we must also look at safety and training for the caregivers.  I will be looking into the L&I cost of “on the job injuries” to caregivers and charting from which type of facility the highest percentages originate from. 

 

Again, hearing that The Department has now adopted and supports a continuum of care, maybe we can really move forward with innovative systems which are cost effective to safely support our most vulnerable citizens. 

 

I will be following up this letter with data which supports the need for a continuum of care.  In addition to having accurate data, it is critical for some very prominent advocacy groups to realize that denying our citizens with the support needs which are available in the residential communities is not only denying these people their human and civil rights but will weaken the whole system by putting an undue financial burden on our state.  These actions which they advocate for will actually minimize the services to many who have less acute support needs.  The dollar can only be stretched so far without something giving.

 

 If one were to follow their example of “everyone needs to live in the community” I’m afraid that we will lose many of our beloved family members. 

 

Again, thank you for your follow-up letter and I will be communicating with the Task Force Members often once the committee has been decided.

Our Citizens are worth the fight to maintain civil rights

Let’s uphold the civil rights of all of our citizens, regardless if they are able to stand up for themselves or make their voices heard.

Over and over again, we hear about a fictitious number of DDD clients who do not receive services, we hear about  how keeping our RHCs open takes away services from those who may need services and our most vulnerable citizens with the most complex needs are continually accused of using more than their share of the pot which makes others go without. 

 This is the “Big Lie” that is told over and over again by agencies which masquerade as Disability Advocates.  They state that it is cheaper to care for these individuals in the community – yes, that’s true if you do not support their assessed needs.  That’s this issue – these individuals have needs that have been assessed and they are in the environment which best supports their needs in order for them to be as active and successful in their life and community as they can be. 

 Yes, there are individuals with just as complex needs living in the community – no one is denying that fact.  Also, no one is telling those individuals or their families that their care is too costly so they will be evicted.  These individuals are celebrated for the fact that they live in the community  – no matter what the cost.  But I ask, are they really “in the community?”

 I’ll tell a story of a man that has recently moved out of Frances Haddon Morgan Center.  This man has been celebrated as a success for the Roads to Community Living Grant.  I attended a parent gathering this past spring which was geared at informing parents/guardians of the benefits of moving their loved ones out of an institution.  Brock was the example they highlighted in showing how great this program could be.  There is a video on Youtube entitled “Brock 8” which refers to this gentleman.

 At this gathering, we were told that the transition for Brock was very intense involving many specialists and took about 2 years.   In those two years, there was much property destruction that needed to be fixed due to Brock’s behavior.  Brock and anyone who would be working with him needed to be trained in the Picture Exchange Communication System (PECS) which Brock would be using in his new job situation.  Everyone from the Residential agency, DDD and other programs which were involved with Brock’s transition spoke to the difficulties but that over time (2 years) Brock was able to live in a community home and have a job. 

 What was very interesting to me was that they then said, “He had that job for about 2 months but isn’t working now but we won’t go into that.”  I took that to mean that this expensive experiment wasn’t as successful as they wanted to picture it so they were going to end the success story at this point.   I later asked about this but due to HIPPA, I am not privy to the information but was told that yes, Brock was not working but was “volunteering.”  There had been a change in vendors and since it had taken several months to train the previous vendor, it would be anticipated that there would again need to be months of training for a new vendor. 

 I do know that there are two young men who have moved out of an institution into a community home.  For these two men, who cannot have others living with them due to safety issues, the staff and housing for each of these men is at least $500,000 a year.  (DSHS)

 I was provided with the list of the 30 most expensive clients for community residential clients by DDD.  The average annual rate for this group is $218.000 per year (range = $181,603- $353,973) – that is only the portion of care that DDD expends.  This does not include other services in the DSHS package such as medical, economic aid, transportation or food stamps.   There are other clients who receive 16 hours private duty nursing care in addition to other services to enable them to live in a community home.

{For reference, the average annual comprehensive cost for an RHC resident is $186,000 (DSHS)}

 These are the complex care clients who live in the community and these clients are expensive no matter where they live.  Moving more complex clients out into community homes against their wishes only for the sake of ideology of the masquerading advocates is a nightmare.  There is so much wrong with this scenario yet because of the untruths and rhetoric that are continually published without question, people believe what they are told. 

 

Our citizens deserve better. 

 When a person chooses the environment which works for them as guaranteed under Federal Decisions, no one should be able to evict them from their homes.  On top of this, the reasons given are under false pretenses:  less expensive, more involved in community, better care – none of these reasons can stand up when the facts are presented.  The problem is that the facts are not presented or presented but tossed aside because they do not support this ideology gone awry. 

 One huge part of this problem is due to the silo effect as explained in my previous post.  Sure, maybe moving a client out of the institution would make the DDD budget less but those costs are still there under another program within DSHS or put upon the community (as in increased emergency calls to the Fire and Police Departments.)  It’s time that our government, legislators, advocacy agencies and citizens were responsible and looked at the whole picture of care – not just the peephole that suits their cause. 

 It is clear from actually looking at the figures that in reality, the comprehensive care in the RHC is much more cost effective than care for an individual who chooses to live in the community.   I don’t understand why the residents who choose to live in the RHC, which is clearly a cost effective care center which supports their assessed needs, are harassed and threatened with eviction, due to their care being expensive when in reality, their care is less expensive than if they chose a community setting. 

 Yet, if they chose a community setting, the cost of their care would greatly increase, yet these same advocacy groups who complain about their current care being too expensive, would then celebrate in the fact that their care is now community based, yet much more expensive.   

THIS JUST DOES NOT MAKE SENSE if one really cared about the person.  So, obviously, this issue is not about the care of the person but about something else.  Who are these advocacy groups really advocating for? 

 

 

Works Cited

DSHS. “DSHS Client Services FY 2007-2008.” n.d. http://clientdata.rda.dshs.wa.gov/ReportServer/Pages/ReportViewer.aspx?/CSDBAnyYear/Landscape_StateClientSvcsByAge.


Washington State Senators who voted “Yes” on SSB 5459 are tagged in this message.  I don’t believe that these Senators were exposed to the real issues or that the facts were presented to them.  I believe that their decisions on this case may have been based on rhetoric and false assumptions that prevailed in the legislative session.  I would love to talk to any of them and try to educate them on the real issues with real people and real cases involved.