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;.

Is Washington State “decades” behind the times?

This has been an interesting week for TV Investigations into issues of care for our citizens with Intellectual Disabilities.

One deserves to be heard and is a real investigation into real and current issues of abuse and death of an innocent man who happened to live with an intellectual disability.  Well, the other report, is not really an investigation – at least not yet – but looking into what happened in the institutions over 40 years ago with video of the horrible conditions in bygone years.

Kudos to Tracy Vedder from KOMO News for her investigation into the death of Jessy  Hamilton and the total mistreatment of him while under the care of the court system.  Jessy’s death is a tragedy and could have been prevented if the judge, lawyer, Cetralia Police Department and the Developmental Disabilities Administration were capable of doing their jobs.

lhttp://www.komonews.com/news/investigations/AutismDeath.html

On another station, Susannah Frame of King 5 News has started her investigation series titled “The Last of the Institutions” with this video.

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

Unfortunately, the information that Ms. Frame has shared is decades behind and not factual.  She has gathered her information from biased reports and has chosen to use video which does not depict our state’s therapeutic communities as they are today.  She has chosen to show one campus from a back gate separating the campus from a neighboring park – the only fence she could find on the campus.  When questioned about this blatant misrepresentation of what the campus looked like she wrote “it was the only public space they could find”.  Ms. Frame ought to know better – the campus itself is public property – no gates or fences – she could very well have chosen a setting to show what the campus actually looked like.

Washington STate DSHS did make a clarification of this shot on a comment on the King 5 Website:

DSHS Clarification of Fircrest Video by Susannah Frame

Ms. Frame states that there will be more coming in which she will delve into the various issues more thoroughly.  My hope is that she has facts – not just wishful thinking.

I will be following the “investigation” closely and adding comments here and on King 5 Facebook and website.  I will provide facts and resources.

The issue is not “community” vs “institution” but about how are state can provide quality care to those who need it bases on their support needs and their choice.

We are way ahead of other states but we do need to have better quality of care, better oversight in the community, better pay for caregivers and better training and support.  Continuing to keep the “community” vs “institution” issue as a focus will only detract from what we really need to look at and investigate.  This is irresponsible reporting.

“Real Life”

In a recent thread in the LinkedIn group “Intellectual Disabilities Support Professionals” there has been a heated “discussion” regarding inclusion.  There is one very outspoken and prolific writer who regards anything but independent living supported by his agency as being “groomed for a systems lifestyle” to be “segregated, isolated and warehoused in institutions”  He calls himself an advocate but has disdain for anyone one who needs extra supports which may not be available in his type of community.  He refers to people who have higher support needs as not having “real lives” because they may live in a supportive community, an intermediate care facility, or group home.  He refuses to listen to others and abrasively dismisses any viewpoint other than his own and that of his agency.  Needless to say, his writings are tiresome, repetitive, derogatory, one-sided and void of understanding of the complexity of the “real” situation.

It’s really a shame because this person is passionate about his advocacy but is unable to see or appreciate alternatives and the fact that the population of people with intellectual disabilities is very heterogeneous.  The researchers are now beginning to realize that “one size does not fit all” and most of the research has focused on those who have a fairly good command of language complexities and those who only have a developmental disability not people with  intellectual disabilities.

“Operational definitions of self-determination have moved beyond simplistic versions that focused almost solely on choice making to take into account cultural differences and the fact that different people desire to have differing amounts of personal control over specific areas of life that they view as important.” ( Wehmeyer and Abery, 2013)  These authors also point out that future research needs to better account for the fact that self-determination “is exercised within the context of relationships (with people, organizations, systems, etc.) and that as a result, relationship factors need to be taken in to account.”

My son Thomas is 20 years old and lives in a supportive community which many would call an “institution”.  He calls it home.

Thomas is very self-determined making many choices which are important to him.  He lives in the community in which he grew up and enjoys events all around the region.  He is extremely good at planning what he wants to do and filling us all in on the local events around town.  He is a wealth of information.

 It’s absurd to think that Thomas doesn’t live a “real life”

The LinkedIn writer I spoke about says that people in institutions are groomed for systemic segregation, are warehoused and isolated never to be seen again – he certainly has no idea about “real life”

Below are photos from just a few of the choices that Thomas has made this summer

Thomas attends mass weekly at Blessed Sacrament Church in Seattle, Washington.  He was baptized in this church and has gone here his whole life.

Thomas at mass

Thomas at Blessed Sacrament

Thomas attended a Mariner’s game and had to get his photo take with the Dave Niehaus statue

Thomas at the Mariner's game with Dave Niehaus statue

Thomas met with two of his most favorite people – his friends Gretchen and Kelly

Thomas with Gretchen and Kelly

Thomas loves to go out to eat – he has chosen Kidd Valley, The Northgate Food Court,  Piroshky Piroshky, Taco del Mar and Panda Express as his most frequent places this summer

Thomas at Kidd Valley Eating at Northgate Mall - Piroshky Piroshky

He attended the “Sounds of Summer” concerts at University Village – something he does every summer.  He is well recognized there as he is the first one up to dance and chats with the band members.

Thomas at Eldridge Gravy and the Court SurpremeThomas at Hit Explosion

Thomas at University Village

Here are some video clips of parts of the concerts

He attended day camp at Woodland Park through the Seattle Parks – another annual favorite!

Daycamp 2014

iphone august 2 022

and he organized an “All Star” Pizza Party  at our house

Thomas clapping for All Stars Thomas at All Star Party

Sno-Cones at 3:30!

Wow – summer finally started in the Seattle area today.

I was at my son’s supportive community and they decided to pull out the sno-cone maker machine – talk about bees swarming to honey! This treat was much appreciated by all and the campus was buzzing with activity.

This is what true community is about – being able to participate and have fun with your neighbors!

Even with the lure of sno-cones, the residents who garden with me were excited to pick the first of our snap peas – they are like candy to some of us.  The tomatoes and corn were planted, too.  The gardens will be in full swing very soon!

Our blueberry bushes are amazingly abundant with berries – can’t wait until it’s time to pick them.  Look at this photo that was taken last week after a rainfall.  The bush can barely hold itself up due to the weight of the berries!

Blueberries

 

Entitlement?

We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.

 

“unskilled minding”

Progress comes with problems which then need to be addressed.  This is the situation we are currently facing regarding issues of deinstitutionalization.  As with almost everything – there are few things that are ALL GOOD and few that are ALL BAD and this is the case here.  Unfortunately, many advocates have broken this issue into GOOD and BAD without looking at the “in-between”.

People need to realize that by the very nature of the disability “intellectual disability many need other people to help them make decisions on their behalf and their quality of life may depend crucially on the help of others.  Just because one is given choices does not mean that one is capable of making those choices, particularly when one does not have the skill or knowledge to understand the consequences or even a need to make a choice. Choice involves both opportunity and decision-making – freedom to choose, initiative to choose and the skills to choose.  (R.J. Stancliffe, 2011) Those who live in supported living homes are more likely to be vandalized or be exploited by those in the community – yet they have more choice.  Choice, without skills and knowledge is dangerous.  It is important to note that it should not be presumed that independent choice is always the most desirable outcome. (R.J. Stancliffe, 2011)

I believe we need to slow down on this process – not halt it, but take a step back and re-assess what we are doing here. What I have witnessed is an emphasis on quantity rather than quality just to get people out of the institutions, Simply moving people into dispersed homes and thinking progress is being made with deinstitutionalization is a sham.

What comes up again and again is staff support.  Trained, stable staff is the key to good outcomes.  Care providers need training and leadership yet this is not a priority. The lack of capacity leads to priority given to quantity of placements and not quality of placements.  When the funds are spent on the physical placements and not directed to staff training and support we end up with “unskilled minding.” (Mansell, 2006) We need funds to be directed to training in active support and other types of direct help which enable people – especially those with the most severe disabilities – to grow and develop as individuals and to engage in meaningful activities and relationships in their community (Mansell, 2006).”  Unfortunately, this is rare.

It is clear that those people with the highest support needs experience poorer outcomes than those who are more independent.  These people are also the generally the last to move to dispersed housing and they experience more difficulties living in the community at large and are the most at risk. Many of these people have challenging behaviors and need trained staff in safe ratios to care for them.  What happens is these people become isolated and imprisoned due to the lack of support.

What I do not understand is why, when we are facing a crisis situation in our dispersed housing communities, would advocates propose adding to that population without adding adequate supports?  You cannot simply put these people into dispersed homes without the support they need to maintain their quality of life.  This support also needs to be sustainable – not a one year grant.  When a person is totally dependent on another person to even go outside the house the quality of life is dependent on the quality of care and the staff ratios.

It’s also not just socialization but medical health which is affected by this movement.  Regardless of deinstitutionalization stage, important deficits in variables related to medical health were found in family homes and independent living arrangements (Anna P. Nieboer, 2011)

There is reluctance on the part of health care professionals and parent’s to move people to dispersed homes.  Even though there are studies which indicate community living can improve the lives of many people there continue to be many problems associated with negative outcomes. (R. Martenez-Leal, 2011) There are serious deficits and under-performance of outcomes in community-based services which need to be corrected.  Staff training, support and stability is a major issue. These issues need to be addressed and supported in order for families to health care professionals to proceed.

Looking at the care provided has disappeared as a priority in the deinstitutionalization movement.  Without our priorities changing, I’m afraid that more and more people will be isolated and abused for the sake of this movement.

We need to change the focus from looking at intentions and wishful thinking to looking at outcomes and results.

 

 

Bibliography

Anna P. Nieboer, V. P. (2011). Implementing Community Care for Poeple with Intellectual Disability: The role of Organization Characteristics and the Innovation’s Attributes. Journal of Applied Research in Intellectual Disabilities, 24, 370*380.

Mansell, J. (2006, June). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual & Developmental Disability, 65-76.

R. Martenez-Leal, L. S.-C.-d.-C. (2011, September). The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research, 55, 852-872.

R.J. Stancliffe, K. L. (2011). Choice of Living arrangements. Journal of Intellectual Disability Research, 55, 746-762.

 

 

 

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