Preaching to the Choir

Today I wrote a letter to the nurse practitioner that was assigned to Travis’s case when he was admitted to Peak View Behavioral Health. I wanted to share it with you.

October 5th, 2022

Vanessa Martinez

Peak View Behavioral Health

Re: Travis Kastle, Admitted 3/29/22 – Discharged 4/7/22

Dear Vanessa,

I wanted to give you an update on our son, Travis. I wanted to let you know that he still has significant mental health challenges, but that he is more stable than he has been in years.

You probably have too many patients to remember him or his case specifically.  You took the time to call me the afternoon the day after he was admitted. During that call I listed for you all of the medications that Travis had been prescribed in the past, starting at the age of seven.

You immediately asked if Travis had ever been prescribed lithium. When I said no, you asked why not? I didn’t know. You prescribed him new medications, including lithium.

Travis started to feel some relief immediately.

Travis has a nurse that comes to his house once per week to fill his locked medication box. I met his nurse at his house after discharge with the new medications you prescribed. He called Travis’s psychiatrist to let him know about the new medications. Travis psychiatrist indicated that he was not happy with the new prescriptions and may not refill them.

Travis is now seeing a new psychiatrist.

Our family had been asking for support for years with regard to getting him on the right medications. Each time his medications were changed Travis and his family had to deal with the resulting behaviors and side effects.

In the last ten years or so we brought Travis to our local emergency room on multiple occasions. Not regularly, just when he was in crisis mode. Each time we were told that we were already doing all that could be done for Travis. The on-call psychiatrist would be called, but never came in. Staff told us that was because Travis already had a psychiatrist, a therapist, and was taking psychiatric medications. We were told to get in touch with the psychiatrist he was already seeing.

Travis would be asked if he was going to hurt himself or anyone else on that day and then be released. These experiences were extremely frustrating for our family. We only brought him to the ER when we desperately needed help. If we had received that help at any one of these visits we may not have had to come back time and time again.

If the on-call psychiatrist had come in, it’s possible that they would have asked if Travis had ever tried lithium years ago. Saving him and our family years of distress.

One time in the ER we were told that Travis couldn’t be admitted until he made an actual suicide attempt. What if he gets it right the first time?

One time the ER sent home a sheet with a list of things you can do when you’re feeling depressed. Light a candle, put fresh flowers on your table, take a bath, go for a walk…  For real. Deep sigh.

If Travis had been admitted to a psychiatric bed during one of these previous ER visits, he may have been prescribed lithium earlier.

Once again, we brought Travis to the local ER on March 28th. Once again, they indicated they were going to send him home. Only this time I had a meltdown. Over the years I watched Travis continue to deteriorate. His frustration grew to a boiling point because he was tired of trying medications that didn’t help. And sometimes hurt.

I had called his psychiatrist days before, even sent him copies of Travis’s threatening texts. He called Travis and determined he was fine, in that moment.

I became the ugliest version of myself (Raging Mama Bear). I told the hospital staff that if they released Travis and he ended up hurting himself or anyone else that I would get on national television and tell the world that I begged them for help. And they refused.

I asked them if Colorado had such a high suicide rate because we had such a low number of psychiatric beds. The staff member said that it was extremely difficult to find a psychiatric bed, but impossible to find one for individuals with an intellectual/developmental disability (IDD).

I have to tell you that I was shocked to hear this. In all the years we had been asking for help, not one person said he couldn’t have a bed because of his IDD. First, this feels a lot like DISCRIMINATION to me. And second, mental illness is fairly common among autistic individuals with an intellectual disability. Are we just going to ignore the needs of this population?

The hospital staff member shared with me that the professionals at the psychiatric hospitals don’t know how to help this population. If the trained professionals don’t know, how do they expect parents to know?

I noticed in Travis’s ER visit chart that some of the behavioral health centers that were contacted refused to admit Travis with the reason listed as: capabilities.

You might be wondering why I am writing you this lengthy letter. Not only did I want to thank you personally for the care you provided for our son, but I wanted to thank Peak View for admitting him. For deciding to help our son regardless of his other diagnoses. A simple medication change has made a huge impact.

I wanted you to know that Travis is a success story. So that Peak View continues to say yes to patients that have mental health diagnoses as well as autism and/or IDD. Please share our story with the staff making admittance decisions.

Travis was brought to Peak View by ambulance. Peak View is over two hours from his house, closer to three from mine. It was pretty late in the day.

I got a motel room in Colorado Springs. I needed to be sure that Travis wasn’t going to be released right away. I had visions of him walking around an unfamiliar city. I also didn’t know that Peak View was not allowing visitors due to Covid. A nurse called me in the morning to get information about his existing prescriptions. She hoped that I had brought them, only I didn’t know to do that. She said that I would be hearing from a doctor (or in this case a nurse practitioner) that afternoon to determine a plan.

I also received a call from a therapist. I mentioned that I was waiting to hear from a doctor and wondered aloud if I should reserve my motel room for another night. The therapist asked me, “What are you doing here?” Which confused me. I mentioned that it was a good thing that I was there because I had to go get clothes and deliver them to the front desk. The therapist said, “Most of our other patients don’t have clothes, or even families to bring them.”

I asked her if she felt that Travis didn’t deserve a bed because he had family involved in his life.

I wonder how many families might still be intact if psychiatric care/beds were more readily available.  Is it possible that some individuals wouldn’t get to the point of extreme illness or behaviors? Where some families may check out? It feels like to us anyway that Travis’s mental health had to deteriorate before we could get him the help he needed. What if we tried to put out the fires before they became infernos? And why shouldn’t I be there?

The system assumed that Travis was getting appropriate or even adequate care because he already had a psychiatrist. If Travis had a physical ailment, the ER would have been happy to offer a doctor and a second opinion.

Based on our experience, care is being rationed, and withheld from those that might need it. It is true that Travis has many supports in place. For most individuals it would be enough. I wouldn’t have pushed so hard for Travis to be admitted to a behavioral health center if I didn’t think it was absolutely necessary.

I don’t like to think about what may have happened if Travis were not admitted to Peak View.

So, thanks again! I understand that you and Peak View are doing your best to take care of as many individuals as possible and that I am preaching to the choir!

My frustration is with the mental health system and the lack of funding available to improve it.

I sent a copy of a few pictures of Travis in her letter. So she could put a face with a name and see who we are fighting for.

Maybe the next letter should be to the hospitals that said no due to his capabilities. Hmmm.

“Preach the gospel at all times and if necessary, use words.” - Dieter F. Uchdorf