A Story of Utah Healthcare

On Sunday it will have been nine weeks after my son left home in psychosis, convinced that a casual remark I made about calling Vocational Rehab for help with a job meant I was (in his mind) a sociopathic narcissist who he wasn’t safe to be around. He left a home to live in his car, with no savings or income. It’s not the first time that he has done something like this, but each time I worry that it might be the last time I see him.

In February there was a national shortage of his antipsychotic medication, a long acting injectable that he took every four weeks to relieve symptoms of psychosis.  Although it didn’t “cure” him, he was stable and had been at home since his last big break in 2019. Since then we had negotiated through parole visits and mental health court. He struggled to work steadily but couldn’t keep a job. He has worked at more than 40 places since he was diagnosed, but hasn’t averaged more than 3 weeks in any single job. In almost all of these jobs he has chosen not to reveal that he has a mental illness. He is fired, or quits, or stops showing up.  There are unreported accidents from work. There are timecards left unsigned and unaccounted. There are customer complaints, or employee complaints, or HR reports. Oftentimes he would come home to say that a co-worker was one of the new voices in his head tormenting him, and he didn’t want to work around them any more.  

To make up for the temporary shortage, his prescriber decided that another LAI could be prescribed. I had immediate concerns because we had tried switching over to this other medication before, and the results were that he lost efficacy in his treatment.  The three of us got on a Zoom call to discuss treatment options, and the doctor was steadfast that the treatment would work with a new method of onboarding doses before transitioning to a more standard regimen.  I was skeptical, but my son trusted the doctor and we agreed that this new plan would be followed. Less than a month after beginning the transition I contacted my son’s doctor and counsellor to say that there were some minor but noticeable changes.  It didn’t appear that the new medication had the same therapeutic effect as the one it was replacing.  This was the beginning of me regularly emailing the hospital to describe my concern as his psychosis became apparent. My son was beginning to drift into paranoia, and it was going to get harder to bring him back each day we delayed. The prescriber suggested that my son supplement his shot with an oral-form antipsychotic. This was not suitable at all – the entire reason we were using a long acting injectable was because my son didn’t take oral meds.  They asked him to come in to pick up the oral medication, and he agreed but didn’t show up. He re-scheduled, then called and cancelled the appointment.  He didn’t want to take the oral meds. He didn’t want the injection either.  He just wanted to be safe because he didn’t trust the hospital anymore, and he didn’t trust me.  

In the week before he left he would come upstairs and talk to the pets. “I’m not afraid of you”, he would say. He no longer looked at any of us, instead he would look up, or look past us, or ignore us altogether while drowning us out with the music playing in his ear buds. At night, when we were in bed, he would go to the same computer that I’m typing this on to watch Youtube videos on narcissism, trauma bonding, sociopathy, tarot and astrology.  I was finding drawings and symbols that were his attempt to cast protective spells and use magic. When he found work he would often complain that a co-worker was a narcissist.  Now that he wasn’t able to work and became more isolated, he was beginning to turn this view on me. When he left he broke his bedroom door. He was angry, or afraid, or both. I didn’t stand in his way, and just let him take what he wanted before he left home. 

My son decided in his psychosis that his doctors and counsellor who had been with him for the past 5 years weren’t safe. He decided that his family wasn’t safe. He decided that the course of treatment he had been following wasn’t safe. He left home without money in his account, without a job, with no place to go.  I was keeping tabs through his hospital until he stopped talking to them. I have called the local police department to explain that he’s out there, and if they meet him they should have a note on file that he has paranoid schizophrenia but has typically been cooperative with police. I wait to hear something, but there is nothing.  I lie awake at night wondering if I would hear him come in during the night when he is routinely up and about.  I wonder if he wants to come home but thinks he can’t.  In one of our last exchanges I told him I didn’t feel safe around him because he was using threatening language about me. I didn’t want him to come home, not until he was willing to get help. 

A few weeks ago there was an officer-involved shooting near my home that involved reports of an adult male looking into cars at a nearby park that I knew my son frequented.  When officers responded in early morning hours, the person was aggressive and was shot and killed. The area was shut down while the investigation of the scene followed. When I heard, I panicked.  Could that have been my son?  I got in the car and drove to see, not sure what I would find.  When I arrived on the east side of the park, I could see his car and my heart sank. All I could think was “Please, no“.  I approached the car slowly. The windows were down. As I came past the vehicle I could see him, sitting in the back seat.  He saw me too, and he wasn’t happy to see me. But he was there, he was alive.  

I don’t know when I’m going to see him again.  I don’t know under what circumstances that I hear from him, or from the hospital, or a police officer, or from the metro county jail.  I have lost my son to psychosis, again.  As an adult, only he can consent to receiving treatment. The exceptions being that he is a danger to himself, or to others.  As his father I cannot request help, and I can’t talk to him in a way that would make him want to seek help.  He has been at UNI twice. The first time I implored him to get help because I was losing my son, the second time he was committed because I found him after a period of homelessness, bloodied and seeing “how far he could go” to cut himself. He doesn’t want to go back, and he thinks he knows better.  

It’s hard to say all of this.  I’m truly at a loss, and I don’t know what to do. We don’t have any laws to protect us from ourselves, and we don’t have any laws to step in when someone is experiencing psychosis.  It doesn’t matter if it leads to financial ruin, or destroying your health, or if it takes away the stability that you worked for years to have.  None of this matters.  

How do I get my son back?  How much will he suffer before something can be done? My heart is breaking for him, for my family, but also for every family who shares a similar story of loss. 

Update: Some readers responded and pointed me to Unsheltered Utah, a 501(c)3 nonprofit with outreach in the south valley. I have contacted them and they have engaged my son. Thank you.

“Nothing About Us Without Us” – notes on Disability Pride

I inadvertently picked up on a kind of disability code that was common then: minimize the impact, hide it, sweep it aside as a mere personal detail – and get on with your life. This, I see now, was the opposite of disability pride.

Ben Mattlin

It is July 2023, and it’s Disability Pride month. As an ally, and a caregiver, and a person with my own disabilities I know that there are nuances to what pride means to the disabled community; but the word “disability” is an intentionally broad and inclusive term for us to gather under.

Disability Pride is about breaking down the shame and stigma that still abound in our homes, communities and at work. It is about being seen, it is about speaking up, it is for challenging institutional biases. It is a movement of porting conversations, and policies, and law, and architecture to recognize that we all contribute uniquely, that we engage and communicate uniquely, that we access things differently.

As an ally, I want to encourage you to recognize how different a view of the world is for someone who is disabled. Perspective is gained by engaging, by listening, and by learning. It’s a journey that I’m on too and I’m asking you to share it with me.

Learn more. Here are some book and film references (sorted by year of publication):

Connect. Here are some social media accounts to follow (sorted alphabetically by first name) – there are many accounts to follow but this will get you started:

  • Aaron Rose Philip – model – instagram
  • Abby Sams – adaptive athlete, model – instagram
  • Ali Stroker – actor, Tony Award (Oklahoma!) – instagram
  • Alice Wong – author – twitter
  • Andrew Pulrang – Forbes contributor, writer – twitterlinkedinsubstack
  • Ayanna Pressley – US Representative, Massachusetts (D)
  • Chelsea Bear – instagram
  • Christine Miserandino – author, “The Spoon Theory” – twitter
  • Gaylyn Henderson – Aerie model – instagram
  • Jillian Mercado – latinx model – instagram
  • Jim LeBrecht – filmmaker, Oscar nominee (Crip Camp) – instagramtwitter
  • Kim E. Nielsen – professor, author – linkedin
  • Lily D Moore – actor – twitterinstagram
  • Melissa Blake – activist, blogger, author – instagramtwitter
  • Rebecca Cokley – activist, author – twittermedium
  • Ryan O’Connell – author/star of Netflix “Special” – instagram
  • Serge Kovaleski – New York Times reporter – twitter
  • Shane Burcaw – author, model – YouTube
  • Steph Roach – instagram
  • Tammy Duckworth – US Senator, Illinois (D)
  • Zach Anner – YouTube

Letter: Prop 3 Medicaid Expansion: Please vote no on SB96 and SB97

This letter is posted for reference in work I have performed or been involved in.

January 29, 2019 – Following the successful 2018 vote for Prop 3 to expand Medicaid in the state of Utah, the Senate introduced bills to repeal the Medicaid rollout for Utahns. An interesting article on this subject was published in 2024: It keeps people with schizophrenia in school and on the job. Why won’t insurance pay? (NPR)


To: Stuart Adams; David G. Buxton; Jani Iwamoto; Luz Escamilla; Allen Christensen; Scott Sandall; Ron Winterton
Cc: Lincoln Fillmore
Subject: Please vote no on SB96 and SB97

Hello Committee Members – 

I’m writing to ask that you vote “no” on the two current bills that attempt to repeal Medicaid expansion. 

I am the father of an adult son who has been diagnosed with paranoid schizophrenia.  I have been working since November 2018 to help him sign up for Medicaid, and are in limbo waiting for an approval that would allow him to begin treatment at Valley Mental Health – a medicaid only facility.  

I have been thankful for my company-provided insurance but know that he is losing coverage as he ages out of that system.  We are struggling to find coverage with adequate mental health counseling with prescriptive support that he needs.  

My reality is that without treatment he will lose the support he currently has.  The ability to receive support through a Utah-based medicaid program will literally be life-changing for him. 

Respectfully, 
Gregory Green


Gregory,

Thanks for your email. Thank you for sharing your son’s story. My wife’s late brother had the same disease until he passed away in 2015. I understand your difficulties, though not as well as my wife and her parents do. To help people like your son, I’m running a separate bill (SB39) to provide new funding and a new way for you to get treatment for your son, especially as he ages out of eligibility on your insurance plan.

Regarding Prop 3, I am confident that expansion will move forward in a way that provides more options for your families, but it will necessarily look different than what was on the ballot in November. Unfortunately, that program is projected to run a deficit of more than $150 million over five years. That deficit has to be closed, because our constitution does not allow for an unbalanced budget. In order to close the gap, I see four options:

  1. Repeal the initiative
  2. Raise taxes beyond what voters approved in the initiative.
  3. Cut funding to other programs (like education, transportation, public safety, or air quality) that voters did not approve in the initiative.
  4. Restructure the initiative so that it can be implemented in a more efficient way and reduce costs to fit the taxes approved by voters.

Each of those would change what was approved by voters. Which do you prefer? Or, do you see another option that I’ve missed?

Thanks,
Senator Lincoln Fillmore


Hello Lincoln – 

Thank you for the link to https://le.utah.gov/~2019/bills/static/SB0039.html. I am reading through that now. 

I’m not sure why Prop 3 has to be necessarily different than what was on the ballot.  I don’t have any conflicts with Prop 3, and generally support its increase of  the state’s sales tax by 0.15 percentage points (from 4.7 percent to 4.85 percent) to fund Medicaid expansion costs. According to https://gardner.utah.edu/wp-content/uploads/Medicaid-Brief-Final-Aug-2018.pdf the cost to Utah would only be $77m.  Please tell me what analysis projects costs of $150m? Regardless, the federal funds made available through this are significant, and are currently unavailable.  An attempt to repeal Prop 3 goes directly against the will of voters and would obviously be challenged in courts by us.  Your third option doesn’t have to happen if the tax increase is implemented, and the fourth option would obviously be entertained where improvements that improve the efficiency of the Medicaid rollout can be made.  

Thank you, 
Gregory Green


Greg,

In Prop 3, the voters approved Medicaid expansion for a set amount of money. Unfortunately, the money, after the first year, won’t cover costs. Anything we do to close that gap changes the initiative. We could raise more taxes. (SB96 does that.) We could take money from other programs (SB96 does that, too) to cover some of the gap. We could also restructure service availability so that people that are eligible for access under non-Medicaid programs get that coverage first. (SB96 does that, too.)

The federal funds available for Medicaid expansion are more than $1 Billion per year in 2024. And the sales tax increase approved by voters brings in another $105 million. And savings from the expansion are another $40 million per year. Yet, with all that, there is still a $65 million deficit in year five, which makes the cumulative deficit over that five year period over $150 million.

The tax approved by voters is simply not enough to fund the program the way it’s structured. Even the initiative’s sponsors acknowledge this. They’d just prefer that we take money from other programs to pay for the expansion, which is their top priority. It may also be yours. However, I think that SB96 strikes the right balance of providing access to health care for all Utahns within the funding authorized by voters.

Thanks,
Senator Lincoln Fillmore

Note: I contest the numbers that Lincoln provides in his response, which is contrary to research on fiscal impact published by third parties at that time.

Letter: Statement for H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014

This letter is posted for reference in work I have performed or been involved in.

September 5, 2014 – A letter of support written for congressional bill H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014. Submitted through POPVOX.


I’m writing as a father of a daughter with cerebral palsy and epilepsy. I want to urge your support of H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014 to amend the Controlled Substances Act to exclude therapeutic hemp and  cannabidiol from the definition of marijuana.

My daughter suffered an inutero stroke and was born with cerebral palsy.  Her first seizures started at approximately 8 months of age and have only ever been partially controlled with a combination of prescribed medications and a ketogenic diet. The type and frequency of seizures has changed over time, and in 2010 became so aggressive that she would become unresponsive, stop breathing and turn blue during a seizure. Each time this happened we were helpless as parents.  Each time it was like preparing to watch your child die in front of you.  In 2011 we were fortunate that our daughter qualified for a brain surgery (Pediatric Peri-Insular Hemispherotomy) which severed the nerves connecting the stroke-damaged side of her brain.  The surgery successfully stopped her seizures. It has been 3 yearsvthat our daughter Natalie has been seizure free, and it still makes me emotional to talk about this because my family knows what it’s like to fight for someone you care so deeply about to not have seizures. 

We continue to be involved in the Epilepsy community, and continue to advocate for people who have seizures. This House Bill is significant because through it comes a therapeutic solution for U.S. citizens that offers tangible and evident relief from seizures which are otherwise not controlled by medicine.  There is stigma around the treatment because the oil is derived from a form of cannabis; however the amount of THC in the hybrid used is low enough to meet the federal definition of industrial hemp.  The medicine is oral and is not psychoactive.  CBD has significant neuroprotective properties, while causing fewer side effects than anti-seizure medications. 

Please show support for this bill when it comes your time to weigh in.  This bill offers hope to families whose lives are impacted by epilepsy.  This is a viable treatment to significantly reduce seizures for some people who are not otherwise able to control their seizures.  It is a safe treatment which has growing evidence of success.  

Letter: Reschedule Marijuana on DEA list of Controlled Substances

This letter is posted for reference in work I have performed or been involved in.

28 June 2014 – a letter to the U. S. Department of Health and Human Services requesting to reschedule marijuana on the DEA list of Controlled Substances


The Honorable Sylvia Mathews Burwell, Secretary
U. S. Department of Health and Human Services
200 Independence Avenue SW, Washington, DC 20201

Hello Sylvia –

I’m writing to you as a father of a daughter with cerebral palsy and epilepsy. I want to urge your support to change policies to support research of marijuana and to recommend that Attorney General Eric Holder reschedule marijuana on the DEA list of Controlled Substances to make it more accessible for compassionate use and research.

My daughter suffered an inutero stroke and was born with cerebral palsy. Her first seizures started at approximately 8 months of age and have only ever been partially controlled with a combination of prescribed medications and a ketogenic diet. The type and frequency of seizures has changed over time, and in 2010 became so aggressive that she would become unresponsive, stop breathing and turn blue during a seizure. Each time this happened we were helpless as parents. Each time it was like preparing to watch your child die in front of you. In 2011 we were fortunate that our daughter qualified for a brain surgery (Pediatric Peri-Insular Hemispherotomy) which severed the nerves connecting the stroke-damaged side of her brain. The surgery successfully stopped her seizures. It has been 2 years and 11 months that our daughter Natalie has been seizure free, and it still makes me emotional to talk about this because my family knows what it’s like to fight for someone you care so deeply about to not have seizures.

We continue to be involved in the Epilepsy community, and continue to advocate for people who have seizures. Utah was one of the first states to pass legislation that allowed use of CBD oil as a therapeutic solution that offers tangible and evident relief from seizures which are otherwise not controlled by medicine and diet (much thanks to Utah State Representative Gage Froerer for sponsoring HB0105S09). Still, I have friends in and out of the state who have children with Lissencephaly and Dravet Syndrome who are waiting for legislation, or are on a waiting list to be treated. I know one family that moved to Colorado just to become eligible for Charlotte’s Web. It is heartbreaking to know that there are barriers to a seizure treatment that would improve quality of life and save lives.

Please show support for research of marijuana when it comes your time to weigh in, and urge Eric Holder to reschedule marijuana on the DEA list of Controlled Substances. Your stance on this topic and changes in DEA policy can offer hope to families whose lives are impacted by epilepsy. There are viable treatments to significantly reduce seizures for some people who are not otherwise able to control their seizures.

Thank you,
Greg Green