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

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