Five years ago we moved from Alaska to Washington due to our child’s medical issues. Prior to doing so, our child, whose primary diagnosis is Autism, had spent time in a Children’s Psychiatric Hospital for 5 weeks. At the end of this time, we were told he had to have ABA therapy (Applied Behavioral Analysis). If we did not get access to this therapy he was at risk of being placed in a long-term treatment center. ABA at that time was not available to us in Alaska through our insurance. Alaska also didn’t have any long-term facilities. This meant sending our then 9-year-old out of state. It would be for an undetermined amount of time, alone. Medicaid would pay for us to visit him 4 times a year.
This led us to Washington. We are extremely blessed that my husband has a job and insurance that enables us to transfer to any state in the U.S.
Initially, things went well.
We didn’t have access yet to ABA due to waiting lists. The new school and environment didn’t seem to be a problem though.
After six months his sleeping disorder started to rear its ugly head again. He has tested negative for all the usual sleep disorders. We are still searching for an answer to this issue that started when he was five. The disorder can cause him to be up for 40 hours at a time or sleep for 20 hours a day. There is no correlation between the two. We don’t know what medical issues are causing this. Going to school became difficult as he would fall asleep in class on the cold tile floor despite all the noise and commotion. His teachers often couldn’t wake him. We made it through his 5th-grade year and he graduated from elementary school. I breathed a distinct sigh of relief that the school year was over.
I chose to place him in a K-8 school for his next year.
I didn’t feel he was quite ready for a traditional middle school. This afforded him the opportunity for fewer transitions in a smaller environment. Previously he has always handled being in a general education class with pull-outs for special education. That year, his first in middle school, this ability became lost. At the beginning of the year, he would just read a book or draw rather than participate. Or if computers came out he would go directly to YouTube. Behaviors started showing up. He would get into trouble with the other kids, and physically hurt them. He also started moaning loud and so frequently that it became hard for teachers to be able to conduct classes. Several times he was suspended and asked to be picked up early and I was fuming as it was all related to his medical issues.
He is also chronically late. It takes everything I have to get him there physically. Then he started refusing outright to even go to school. Honestly, he should have repeated the 6th, 7th, and 8th grades.
Meanwhile, things had been escalating at home.
When my husband wasn’t home, my daughter and I were routinely having to lock ourselves in our bedrooms to stay safe. Most of the doors in our house need to be replaced due to the aggression he has taken out on them trying to get to us.
He was admitted from Seattle Children’s ER to their Pediatric Behavioral Health Unit (PBMU) for a week. They doubled and tripled the medication he was on.
His discharge directions read that we should contact his DDA caseworker for Wrap Around services for his medical issues and to call the King County Crisis line if we had any more issues. It took me two weeks to contact his DDA case manager after calling, leaving messages and emails. When I did reach her she said she didn’t know anything about wrap-around services. All she could do was increase our hours for in-home care. As we couldn’t find people to fill the hours we already had, that wasn’t any help.
In the meantime, our son’s behavior continued to escalate. Three weeks later my daughter and I had again locked ourselves in our rooms. My son decided to use a large dowl as a battering ram on our doors. My husband was out of town so I called a friend who came and helped me transport him to the nearest ED. He wasn’t safe to transport to Seattle Children’s. We barely made it the 10 mins to our local ER where he had to be dragged and carried into the hospital.
If I had called the King County Crisis line, I am told their response time is at least 2 hours. By that time he would have been through our door. If I had called 911, their regulations state that they must take the patient to the nearest ER. This is important because of what happened next.
He was admitted to St Francis ER in Federal Way.
We spent the first 24 hours there in the hallway with all the other psychiatric patients (adults) with their medical issues, which exposed my son to things that were totally inappropriate for him at his age.
After the first 24 hours, they got us into a room. We remained at this hospital for five days in the Emergency Department. They could not admit him because they didn’t have a Pediatric Psychiatrist on staff. They tried offering hospital privileges to pediatric psychiatrists so he could at least be seen and treated. All of them turned them down.
Seattle Children’s kept saying maybe we’ll have a bed on this date, or maybe the next date. When that day came they would always say they didn’t have space even if they had given us hope the night before. St. Francis tried repeatedly to get Seattle Children’s to at least transfer him to their ER as St. Francis’ ER was inappropriate for an 11-year-old to be living in. Seattle Children’s declined.
After multiple experiences with false hope, I was fed up. I called the PBMU myself and talked to someone in charge of admissions. I asked him how long it would be before we could be transferred there. He sidestepped the question and replied there were many other families across the state who were in our situation.
I said that was not an answer.
Could it be weeks?
He replied that it very well could be. (I later learned that for some families it was months.) One of the issues here is that my son is only 11. Although at this time we realized he needed residential care, first he had to be evaluated for all of his medical issues and stabilized and due to his age. Seattle Children’s was the only place in the state that could do that. My son and I couldn’t continue living in the ER forever. My husband and I discharged him and drove him after five days in the ER, to Seattle Children’s ourselves. He was admitted back to the PBMU.
At this point, we realized that something had to change. We could not keep exposing his younger sister to this unsafe environment and the trauma this was causing for her. He has a long history of trying medications for his medical issues that end up not working for him. We don’t have many left to try. We felt it was time for intensive behavior treatment at an inpatient facility.
When I started this journey with my special needs child, I was told that Medicaid is the backup and payor for long-term residential care.
You cannot buy long-term care for children in the United States. Our private insurance will pay for 1-2 months of residential care and then that’s it. I assumed wrongly that Medicaid would take over at that point.
I called DDA to find out who Medicaid contracts with for long term care. They referred me to Medicaid. Medicaid referred me to Molina (a health insurance company). Molina said they never cover residential care and referred me to King County Behavioral Health. King County Behavioral Health said they didn’t, and I needed to contact Wrap-Around Services. When I called there, the one person I needed to talk to was on vacation.
This is a typical day for many special needs parents trying to get the care they need for their children.
This was the first time I had been able to figure out what the Wrap Around services in this state was, and where to get answers about applying for them. As I called multiple other people, I learned the process went this way-
We would sign up for Wrap Around Services, then after they processed it, we would have to sign up for WISE (whatever that was, no one was really giving me answers at this point). Then we would need to sign up with a community Mental Health clinic. We were then required to exhaust every single program the state offered. Then we could access pediatric psychiatric long-term care beds (or CLIP beds as they are called in WA).
In talking with others who have applied for CLIP beds, despite several inches of paperwork detailing why kids needed the beds, they were refused access. Others have said it is nearly impossible to access CLIP beds. I contacted one of the places to see if they would even take our son due to his diagnosis. They said they might, but after explaining to them the many issues he has, they said they felt he needed more than the 45 days they could offer at their facility with my private insurance. Ultimately, they decided that no, they could not serve him due to his needs.
We began looking out of state.
We were turned down everywhere, as our son has medical issues that require that where ever he goes someone is trained in his care.
Quickly, we were running out of hope and were concerned about bringing him home.
He hadn’t learned the coping skills necessary. Again he was released to us, without any planning or services in place.
After much searching, we found that the only facility that we could find that would accept him was Texas Neuro Rehab. He was placed on their waiting list. Just as his name came up, we discovered we were moving to the Memphis area for my husband’s work. This meant that he would lose his WA state Medicaid and we would have to reapply after we moved to the new state. They weren’t willing to take him until Medicaid was set up again. Setting up Medicaid in a new state usually takes me at least 6 months.
We moved, and school continued to be a horrific experience for both of us. His sleep issues got worse. There was very little time that he wasn’t sleeping.
I decided that we had to try something different. We were going to have to try ADHD stimulant medicines again. We had tried them when he was younger, but they had made him more violent. I was desperate.
We bit the bullet and his psychiatrist prescribed one after doing genetic testing to see which one would work better for him.
The results were immediate.
Today, he can stay awake during classes. His impulse control is SOOO much better. We have no issues with him getting violent or aggressive. School is still a work in progress, but progress is actually being made for the first time in years. We are happy to have him home, content, and working on things. We really didn’t think we would ever get this far. But we have.
