Category: healthcare

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Under Pressure

I started thinking about Maslow’s Hierarchy of Needs a while ago, and have been playing with variations of its theme to make it relatable to American politics and identity. With the onboarding of the Trump administration in 2025 we have begun to see attacks at every level, and I’m questioning how we can sustain ourselves through another three years when the first year is technically not even over yet. Keep in mind that DJT wasn’t inaugurated for his second term until January 20, 2025. I’m writing this on January 4, with more than two full weeks left before his first year in office is done.

The most concerning attacks are at the foundation of our hierarchy; specifically on the physiological wellbeing, and the safety of our people.

The Foundation is Under Attack

Physiological

Physiological needs are our fundamental needs for survival. If we can’t meet the basic needs of housing, shelter, food, and rest we don’t tend to focus on much else. One of the main problems we’re seeing are ramifications of a failed economy. Homes are unaffordable, and rent increases are pushing families out of markets. US Courts reports that bankruptcies have jumped 10.6 percent in the past 12 months. Food and product prices continue to go up due to inflation and tariffs passed on to consumers. We are actively in a recession, and there isn’t a positive light to shine anywhere.

Real and perceived threats are growing too. It used to be that having a safe place to rest your head at night mattered, but there is increased vitriol online and notably partisan divisions in media and news that grow a divide. Driven by fear-mongering and contempt, we are seeing attacks on the moral character of good people that lead to physical abuse and violence.

Safety

Safety is a broader term that includes health and wellbeing, stability, financial security (income and savings), and programs that provide aid, like health insurance, or the availability of medical vaccinations.

In Bankrate’s 2025 Emergency Savings Report, 32% of U.S. adults have less emergency savings now than they did at the beginning of the year, while 31% have the same amount and 18% had no savings at the start of the year and still don’t have any now. That means 8 out of 10 people in the US have not improved their emergency savings at a time when growing job losses, increased likelihood of medical issues and other problems are far more likely to happen.

In terms of health and wellbeing, Americans are far less likely to be able to afford insurance, or even have insurance now. Premiums continue to rise. Employees who lose work are likely to not able to afford insurance on their own, at the same time that state (Medicaid) and federal (Medicare) programs are removing expansion coverage and making it harder to qualify for care.

Changes in HHS and CDC policies have been detrimental to US citizens, particularly on the availability of vaccines, recommendations for preventative care, and on research and reporting of disease and outbreaks.

Rollbacks of regulatory procedures and audits are causing environmental and food-related illnesses.

From a financial perspective, the Trump administration attacks against the Federal Reserve and Department of Labor are creating problems with interest rates, labor reporting, and reports of economic growth. In the last two quarters, the Bureau of Labor Statistics is no longer generating trusted numbers that reflect our true market. Groups like the Center for American Progress and Real Economy Blog are providing summaries that reflect signs of weakness—particularly among groups that often foreshadow broader labor-market cooling, such as workers of color and older workers.

More than 300,000 federal employees lost work in 2025, and more than 1.1 million private sector jobs have been lost in the same time. Infrastructure jobs gained during the Biden administration have been erased. Tourism is down. International travel is gone. Regardless of warnings that the US economy is headed for recession, many think that the US economy is already in recession. There is a huge wealth gap divide that is growing.

from https://www.reddit.com/r/economy/comments/1pkv4pe/the_us_economy_is_in_a_recession/

Our Socio-Economic Structures are Collapsing

There is a relationship between self, family and culture, social, and societal groups that is under constant adjustment, but overall determines our view of self and others. The entire model is collapsing around us.

Our Critical Thinking

With the loss of trusted media sources it seems that we have lost the capacity to think critically and understand how to interpret media… and we only have ourselves to blame.

  • We have lost focus in a mobile-friendly, short-format publication system, where everyone is a publisher.
  • We have lost context in news that is mixed with entertain and sales. Establishments are no longer selling news, they are editorial boards and infotainment.
  • We have lost criticality and skepticism for what matters in local, national and global events.
  • We have lost reality, particularly with loss of awareness in bias and spin (see where you source your information within the Media Bias Chart), and with the introduction of AI-generated articles and deepfake imagery and videos.

We’re at a point where sarcasm can’t be used because the source has to be thoroughly investigated to know if they are truly using sarcasm, or has “jumped the shark” to present an otherwise irrational statement as conviction. News stories give equal weight to two sides when only one is rational, or true. Publishers are reticent to call out factual lies, or provide fact-checking services for their followers.

Social Media Algorithms and Addiction

It’s been clear for a long time that social media capitalizes on scroll time, and its profitability is measured by how long its audience spends in the app, and how durably it can track your actions across sites. Social media analyzes the amount of time you spend on any given media, search history, cookies, and how you react or comment in posts to determine what to populate your feed with. It isn’t based on “likes” so much as it is based on engagement. And one thing that engages is rage-baited content, rabbit-holes and trolling.

If you have questioned whether social media is healthy for you, the short answer will always be ‘no’. Be careful if you stay because the apps offer an echo-chamber that validates who you are. Watch for the number of negative engagements, whether it is you or someone else trolling. Pay attention to the total time spent in-app. Look for advertisements in your feed based on recent conversations and searches that you may have performed in or out of the app. When you are the product, you have to be extremely careful with how you interact, and how much time you spend in these apps.

The reason that its a problem: Cambridge Analytica proved that targeted influence campaigns can be run on social media to intentionally drive behaviors of social media users. Social Media companies consider you a product. They sell your time in their app, they sell your demographic data to (any and all) advertisers, who target you with curated content to sway decisions you make, whether to make a purchase, or how to vote.

The Undue Influence of AI

There is an unrelenting hype-cycle of what AI can do online, and a lot of money being spent right now on artificial intelligence and their underlying large language models to prove capability and influence investment in more AI. The problem should be obvious but apparently isn’t: AI isn’t a creative tool – it only renders likely answers and images based on what it is trained on. It steals the intellectual property of large groups, is programmed algorithmically to respond in certain ways that can be adjusted up or down (the presumption is to remove bias but it is definitely used to increase bias, avoid facts, and particularly to promote ideology and platforms). AI has no consciousness. AI has no morals. AI is not intelligent, but can utilize layers of decision making filters that give the appearance of intelligence. AI is not creative, but can utilize the same layering method to “predict” what a requestor is asking for. All of this machine learning is built on the stolen data of real people. In worse cases, the machine learning is based on unclean data, or utilizes data pools that include AI-generated content that in turn feed the language model.

As an example, Reddit began charging for large-scale API access in July 2023, and part of the justification was that companies were using data on the site to train LLMs. Two years later Reddit is filling up with AI-generated content. We have AI companies paying Reddit to train their LLMs on AI-generated content, that will influence the results of AI-generated content we see on Reddit, that in cycle train new LLMs. We are at the cusp of an AI circle-jerk of the magnitude which we have not seen.

From https://www.reddit.com/r/antiai/comments/1q421qz/this_is_so_ironic/#lightbox

The Survival of Self

There is rapid societal change in that technology is becoming a primary source of news and interaction. Our US government is structurally degraded and moving further into a state of collapse. Our media sources are becoming more consolidated and biased. Our educational institutions are being attacked. Our economy is falling apart. Job loss, the overall mental and medical health of US citizens is worse, and the disparity of wealth is overwhelming.

As a person living in 2026, where are you now in all of this? How are you meaningfully engaged to your family, to your local community, and to the nation-at-large? If you are the heads-down, jesus-take-the-wheel, job-hugging sort… that may be your coping mechanism to get through all of this. But for the rest of America, we’re in a hole that’s growing deeper, and it won’t be long before the bottom falls out.

If you’re with me, know that we’re all feeling the pressure.

Still there? I recommend that you subscribe to Heather Cox Richardson on YouTube, and particularly listen to Today’s News, January 3, 2025 (starting at 28:18 of 32:33 mins) on why the United States has 2-3 months before democracy collapses.

tl;dr – Speak up. It’s going to get worse before it gets better.

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Caregiving and Mental Illness

On December 31, 2025 NPR published an article under its “What it Takes” series at His brother’s mental illness isolated his family. Now he’s helping other caregivers. My family is part of the story. We were picked up after answering a survey on caregiving that NPR posted a little over a year ago to “tell us your story: How did caregiving change you? How do you cope with the hard parts? What have you learned that you’d like to share with others?”

My Advice from the NPR Survey

What lessons have you learned that you want to share with other caregivers?

  • Take care of you. It’s easy to be overwhelmed, frustrated, ashamed, sad, or angry. It’s also easy to let your physical and mental health slip. Look for spaces where you can give yourself priority. Incorporate activity in your day, and find things you love. If you have depression, talk about it.
  • Seek out your tribe. Find and surround yourself with people who understand the diagnoses you are caring for. The ability to talk with others who not only understand, but can empathize and respond meaningfully matters.
  • Find local resources (Parent Center, Disability Law, Legislative Advocacy Groups, Charitable Support Groups) to be involved with. They will help you with valuable advice, direction and resources when you need them.
  • Plan far ahead for what your person may need. Medicaid qualification, Dependent Services, Social Security benefits, Guardianship, Housing, Estate Planning all requires extensive documentation and may have extensive wait periods.
  • It’s critical to allow your person to self-determine, but know that you are also their best advocate if/when they can’t represent themselves
  • Learn about the condition, and options for treatment. Be open with treatment providers. If you are a parent/guardian or have permission from the patient to talk with doctors or counselors, use that to discuss concerns. If you don’t have authorization to receive information about a patient relationship, you can still provide information to treatment providers to better help them understand an issue or concern.
  • Journal relevant thoughts, and look back. Journals can be for your feelings, progression of treatment or documenting a condition. These notes can be invaluable when you talk to a doctor or are qualifying for a resource.

What has been the hardest part of being a caregiver?

Dealing with depression, and having no-one to talk to. Frustration when you can’t get treatment or support. PTSD from events that happen as a care-giver. Anger at “the system” whether it’s insurance coverages, hospital policy, or legislation/funding that negatively affects your loved one, or having resources taken away that you depended on unexpectedly.

If you’re new to caregiving, what questions do you have about it?

I’m definitely not new. My primary advice here would be that friends who knew the “healthy” you, or before you became a caregiver will often disappear. People will say incredibly insensitive things, or make opinions where they have no understanding/expertise to say anything at all. Be critical of advice (not skeptical, but critical) and confirm with qualified research and/or professionals, even if the advice is from within your tribe/group. Be willing to look for new ways to do things. Look into clinical research.

Featured Voices of the Article

My family’s role in the story is to be the “stranger in the story” and to provide an anecdote illustrating what the other subjects offer: data, experience or action. I’m familiar with and a strong supporter of NAMI, and for the Caregiver Action Network.

⬆️ Christine Crawford, National Alliance on Mental Illness (NAMI)
https://www.nami.org
– NAMI works to educate, support, advocate, listen and lead to improve the lives of people with mental illness and their loved ones
– See: Mental Health Education, particularly the NAMI Family-to-Family course.
– Consider: NAMIwalks 2026 is a friendly, low-barrier way to connect in your local community. You can register and attend an upcoming walk in your area.

⬆️ Marvell Adams Jr, Caregiver Action Network
https://www.caregiveraction.org/
– CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers
– See: Blueprint for Families of Loved Ones with Mental Health Issues

⬇️ Mitul Desai, The CareHack
https://www.thecarehack.com
– Based in New York, currently working with a multi-state practice and launching a Medicaid-funded project in New York. CareHack is focused on working with “big players in for-profit health care systems”, i.e. insurance companies and large practices
– their solution is based on a framework with predictive AI and human coaching

Additional References

I would really recommend checking out these links, and supporting the work of these groups. If you take anything away from this, recognize that there are three absolutes of care: face the difficult topic, keep your heart, and always advocate.

✅ Film: No One Cares about Crazy People, by Gail Freedman
https://noonecaresfilm.com/
– a feature documentary film about the tragedy, crisis and chaos of severe mental illness in America, and a national crusade to do something about it

✅ Film: UNSEEN: How We’re Failing Parent Caregivers & Why It Matters
https://caregiverdoc.com
– Many caregivers for children or adults who are disabled or medically complex are exhausted and isolated. The mental, physical and financial struggle of family caregivers costs us all.

✅Film: The Case for Kindness
https://caseforkindness.com/
– Case for Kindness explores the profound impact of kindness on our physical, mental, and emotional well-being.

✅ Organization: National Shattering Silence Coalition
https://www.nationalshatteringsilencecoalition.org/
– The National Shattering Silence Coalition (NSSC) is dedicated to dismantling the walls of stigma, isolation, and shame that surround critical public health and social challenges. Silence is not a passive state but an active barrier to healing, understanding, and progress.

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Packing for Homelessness

Essentials

  • 30L backpack
  • Outdoor blanket (compressable)
  • Coat with Hood (insulated, wind-resistant, water-repelling)
  • Hoodie/Sweatshirt
  • Pants
  • Socks (wicking, wool-blend preferred), 2 pair
  • Underwear, 2 pair
  • Balaclava
  • Beanie/Knit Hat
  • Gloves
  • High absorbency towel/chamise

Food

Shelf-stable food items are ideal, but also think of gift cards for stores

  • Gift cards for stores and eateries (write the balance on the card)
  • Meat sticks/jerky, single packaged
  • easy open/ring-pull canned tuna, or foil pouches of tuna
  • Trail mix, single packaged (avoid melty foods like chocolate)
  • Roasted nuts, single packaged
  • Thermos, or water bottle (with clip)

Additional Items

Remember, this isn’t for you.

  • Feminine Hygeine Products
  • Towelettes/baby wipes
  • Toothbrush with travel case, toothpaste
  • Waterproof non-slip shoe covers
  • HotHands hand warmers
  • Can Opener
  • Ziploc plastic bags
  • Cigarettes and lighters

Electronics

  • Mobile phone (unlocked), or a mobile phone with service (trac phone, mint, etc)
  • Charging blocks and cables
  • Rechargeable power bank
  • Alkaline batteries for devices (AA, AAA)

Program Stuff – Pass Info Along

If you know the person and can help make sure that they have identification, a travel pass, and access to state benefits – this helps incredibly.

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A Winter Death Knell

What happened today could very well be a death knell for my son. The system does not care. The system is broken.

I received a call shortly after 5AM that my son has been arrested in south Salt Lake county for trespassing. My morning was talking with dispatch, one of the officers, and communicating to the rest of the family. My son has a mental illness and is homeless. When he was arrested they confiscated his backpack and sent it to the PD evidence room because he couldn’t bring it with him for booking at metro jail. I called the Metro Jail to try intervening and was on hold for more than an hour. In that time they completed processing him and “released him” (let him walk out) without a phone, without transportation, no money, and without his belongings. When I spoke to a person at the jail he had been released for more than 30 minutes. I spent the rest of the morning driving around looking for him, and couldn’t find him. I ended up buying a new backpack, warm clothing, a blanket and food so that I could give it to him if I found him. He will be outside tonight without his things. The PD office won’t open to the public until Monday so even if he was able to get down there again he wouldn’t be able to get his stuff.

I am broken. I’m overwhelmed because I don’t know where he is and I’m worried about his safety. This is what it’s like to have a family member with a mental illness.

Timeline

Sunday, Dec 14

5:15 AM – Received call from Riverton Police (I was asleep) that my son was arrested at approximately 5:12AM on Sunday Dec 14, 2025. He was in a construction site, likely trying to stay warm. He has a warrant for arrest (I didn’t know he had a warrant, I’m guessing this is due to a failure to appear for his previous trespass in SLC).

10 AM: Salt Lake Valley Communications Center (Dispatch) took my information and will have an officer call

10:14 AM: Officer callback. My son was charged with interfering with police (borderline resisting arrest). He walked up to a car with an undercover officer at the construction site, and asked for a cigarette; he was initially confrontational when the undercover officer turned on his police lights, and was swearing at the officer. This is why they charged him with interference. He was handcuffed, and “easier to deal with” after that. Note that my son is typically cooperative in police interactions.

  • I’m surprised that he told them to call me. He typically doesn’t want me involved in things.
  • The backpack is in Riverton PD (office is closed for the weekend). We will need to call and schedule with technician to retrieve his property.
  • I am informed that the jail will typically discharge after processing (later in the day)

10:22 AM: Attempt to call the Salt Lake Metro Jail. My call is disconnected unexpectly while in queue (twice); will try again later.

10:29 AM: Attempt to call the Salt Lake Metro Jail. The hold time: 58 minutes. I wanted to ask:

  • Is it possible for a Clinical Mental Health Therapist to refer him to a mandatory hold for mental illness? He is a danger to self due to inability to care.
  • Otherwise, will he be held in jail for a court appearance, or released?

10:41 AM: (While on hold with the Metro Jail) Email to admin@rivertonpd.org with info sourced from rivertonutah.gov/police to request that we obtain my son’s backpack from Riverton PD. Email bounced (email not valid). I forwarded to admin@rivertonutah.gov, ask them to fix the bad information on their site.

11:30 AM: Agent for the Metro Jail picks up, takes information. My son was released on his own recognizance at 10:55 AM – literally while I was on the phone trying to reach the jail.

11:55 AM: I drive down to Salt Lake Metro jail. I don’t see my son anywhere. While in the parking lot, I call Riverton PD and it goes to voicemail. I leave a message that I need to get my son’s backpack.

12 PM to 3 PM: I’m driving east-west on 3300 South, and north-south on Redwood Road looking for where my son may be. I stop at a store to pick up another backpack, warm clothing, an outdoor blanket, towelettes, cigarettes and food. At the end I drive through a couple areas where I have seen him before, but am unable to find him.

3:30 PM: I prep the backpack so that I can hand it to him if I find him. He doesn’t need to unpack anything, it will be ready for him to take.

I check for activity on his debit card and his SNAP card to see if I can locate him based on transactions. There is no activity. I don’t know if he has his cards and ID with him after they took his backpack. He does not have a phone.

I’m second-guessing myself, but I buy a Tile Pro to place on his backpack. In the event that I give it to him I may be able to at least know where he is, for as long as he has the backpack. It’s not hidden. This wouldn’t help me find him today if he already had one, but I may be able to use it in the future to locate him.

9 PM: No update. I’m hoping to hear from him, that he will stop by the house. At this point I don’t know where to look to find him. He could be downtown. He could have tried to walk back to south Salt Lake county, or just got on Trax.

Monday, Dec 15

I have not yet heard from, or found my son.

8:19 AM: Contacted Riverton PD and was routed to voicemail for the Evidence Manager. An appointment is required to pick up the backpack. I made the request and am waiting for a call back.

11:44 AM: Called the Riverton PD Evidence Manager again, went to voicemail (again). I stated that whatever was in the backpack is probably stuff that my homeless son needs to survive on the streets. I’m still waiting for a call back.

12:51 PM: Got the call back. I’m heading over to pick up my son’s backpack.

1:16 PM: The back pack has been retrieved. It had his social security card and his SNAP card. Now all that’s left is to find my son.

Thursday, Dec 18

9:54 AM: Call from Mountain America Credit Union, it’s my son. He wants to know if anything came in the mail for him because he’s trying to get a replacement debit card. I head down to his location, and we are unable to get a new card issued because he doesn’t have any valid ID with him. I have multiple expired IDs with his picture with me. I have my letter of Guardianship. They will not issue a replacement debit without a valid ID.

My son agrees to go with me to the DMV so that we can get a new ID issued for him. We get the ID, then to my bank so I can pull some money out for him, then return to his Credit Union so that we can (finally) get the replacement debit card issued. While there I deposit funds to his account so there is some money for him. I am also able to return his SNAP card and his Social Security Card, which were both in the backpack at the Riverton PD. I don’t know what happened to his original state ID or his debit cards.

He accepts the new backpack, but doesn’t want the jacket or the blanket I brought – he says it’s too much to carry around with him. He asks me to drop him off at the library because that’s where he wants to go. We finish up by just after 12PM and I let him go.

Saturday, Dec 20

1 AM: My son rings the front doorbell in the middle of the night. He wants to know if I can take him down to the police department to resolve his tickets. I tell him that the offices are closed, and we need to go down during the week when they are open. I encourage him to come back in a couple of days, or to call me where I can meet him so we can work things out. He does not have his backpack but at the hour I don’t notice, and only realize after he is gone.

10:30AM: I call the Huntsman Mental Health Institute to qualify when a mandatory commitment can be decided through their crisis intervention team. The person states that there is no condition other than “immediate harm to self or others” that might qualify. A wellness check can always be requested, but my son’s location would need to be known. Gabe’s vulnerability is his inability to care for himself, and his avoidance of shelters. He is currently sleeping outdoors on the ground and has no coat, and no blanket.

Monday, Dec 22

I confirm with the Riverton PD that their case went to Herriman Justice Court, and will not be adjudicated by Riverton. I contact Herriman Justice Court and confirm there are two case numbers pending disposition for Gabriel. I will travel down to Herriman Justice Court Clerk’s office to see what I can find out, but am hoping to bring Gabriel with me.

Gabriel does not come by during the week

Saturday, Dec 27

6:50 PM: It’s my son’s birthday. He stops by to ask if it’s his birthday, and laughs when I confirm that it is. I Invite him into the house, and he opens a card sent from his grandmother. There is money in the card, which he takes, but he doesn’t bother to read the card. I ask him if he’s going to read it and he says he can’t read. I offer to read it to him but he says no.

I give him a couple of packs of cigarettes, which he takes. He goes out to the front step to smoke. I call his grandmother and make some food in the microwave. He comes back in and sits down to eat. He partially converses with his grandparents on the phone. He is laughing, he has some ticks/clicks, and he has a cough.

I ask him about shelters and he says he just wants to sleep in the house tonight. I tell him he can’t stay here (past violence). He asks if I knew he was tased by South Jordan police. I ask him if he was talking about the time he walked up to a car to ask for a cigarette, and he confirms (it was the Riverton undercover PD, not South Jordan). I tell him we can go down to the courts during the week but he has to check in during the day when the courts are open. I ask him about his backpack. He says it was stolen. I ask him if he still has his ID and debit card, and he says those were stolen.

Update: I have submitted a GRAMA request for bodycam and vehicle footage from Riverton PD

Because I asked about shelters he thinks I’m getting angry. He doesn’t finish the food that I made and says he wants to take the soda. He is leaving. On his way out he says his name is ‘Rose’ now.

I had placed a Tile on the backpack before I gave it to him, so I look up the Tile and find it pinging where it appears to have been located for the past week and a half. I drive down to the location, and find the Tile on the ground. There is no backpack.

This is why more than CIT training is needed

  • The arresting officer very likely knew my son would be without anything when he took the backpack.
  • The metro jail did no assessment – at all – for his condition. He should have been referred to mental health services, but wasn’t.
  • When he was released, they literally told him to leave the building, with nothing. In December.
  • He was released on his own recognizance, with the understanding that he would show up for court later. He has no means of communicating (no phone, no email). He likely doesn’t know where to look for court records that will show when a hearing is scheduled. He is not accountable for schedules – and this is a condition of his diagnosis. He doesn’t have a case worker. I’m his father and legal guardian and most of the time it’s incredibly hard to find him.
  • The PD office is closed to the public on the weekend. He has no way to get his stuff back.
  • Because of his diagnosis he avoids people. He will not go to a shelter, especially when he feels vulnerable.
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Thoughts on HIPAA and Caregiver Access

I’m sharing some thoughts after listening to an NPR Morning Edition story from Maxwell David Howard on HIPAA protects patient privacy, but some say it shuts out caregivers. This was an excellent story with good research, and I’m grateful that it was shared.

For context, I have an adult son with mental illness who is homeless, so much of the report resonated with me. It’s worth noting that my son is not a reliable source of information for his own medical history.

Here are a few observations:

  • Hospital Facilities don’t share information in local networks
    In four months, my son used emergency room visits that resulted in referrals to mental health hospitals.
    • None of the receiving hospitals had access to any continuity of care for my son. They didn’t know what medication had been used in prior visits.
    • They didn’t know if he had any medications in his system before treating him, and
    • They didn’t inquire to see if he had any history of hospitalization in the the local area so that they could coordinate services.
  • Case Workers and Care Givers have the same problem of zero notification
    If my son is receiving treatment elsewhere and/or has a case worker assigned, that person is typically not aware of any out-of-network activity. That means that hospitalizations for medical or mental treatment are unknown. It also means that violations, arrests, jailing, or court appointments are “unknowns” with particular impact to the protected individual, who is neither represented, cared for, or defended at critical times.
  • Hospitals use the “we can neither confirm nor deny” about patient admittance
    This is particularly aggravating. When I know that my son is admitted, I typically cannot see or speak to him because they won’t do so without a prior authorization from my son. I have called simply to provide them information, or to ask them to query my son for his approval. However they don’t want to even relay a message to the staff or to my son because that would be stating he was a patient. I typically have to say something along the line of “I know he’s there and I know you can’t confirm or deny that. What I’m asking you to do is take my message, and if you can route it to him, or to his treatment team, to do so. I don’t need you to respond one way or another, but I’m requesting you to take an action that will benefit a patient in your facility without acknowledgement otherwise“
  • I obtained legal guardianship of my son, and it’s still difficult to talk with care providers
    One of the main reasons that I sought limited guardianship was so that I could communicate with health providers, and assist in coordinating care. This does not mean I am notified at any time when he is admitted for treatment, so there is still a discovery process. Often times there is a delay while I provide paperwork/evidence of the guardianship, and I still receive pushback about what I can and cannot do based on interpretations of the limited guardianship.
  • Status of a Protected Individual should be a flag for hospitals to seek Care Coordination
    I don’t want there to be a “list” of protected individuals, and this scares me. I really don’t like that, at all… but there can be processes in place for treatment providers to create routine prompts with patients to determine if there is someone they should be talking to. This is complicated but needs to be discussed further.

There needs to be some separation about communication with caregivers, coordination of care, and decision-making ability on behalf of a protected individual. I am aware that this makes things more complicated, generally – and I’m also aware that risk-averse companies seek to protect themselves from possible violations of HIPAA law when processing privacy-related information. But the HIPAA laws are actually making treatment worse in some cases, and that needs to be addressed.

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Utah is a Cicero Institute Petri Dish

I am calling out the bullshit of Devon Kurtz, Policy Director at The Cicero Institute. Cicero Institute is responsible for pushing to get rid of housing-first solutions THAT WORK, and replace them with institutionalization through civil commitment and incarceration. I live in Utah where he/they have been actively working with legislators to push their agenda.

Utah Homeless Services Board (UHSB)

Letter: “UTAH HOMELESS SERVICES BOARD 2026 GENERAL LEGISLATIVE SESSION RECOMMENDATIONS”

  • This is the Utah Homeless Services Board (UHSB) policy recommendation letter. Randy Shumway (Chair) wants a civil commitment facility (bad bad bad)
  • Note that this letter was heavily influenced by “wants” from Utah Senate Leader Stuart Adams and Utah House Speaker Mike Schultz that incorporated the July 24 Presidential Executive Order policy changes to move away from a housing-first policy that Utah has traditionally been a leader for, and previously shown great success in implementing.

Response: “Utah Housing Coalition Shares Community Concerns on Utah’s “Action Plan to Address Homelessness” Aligned with the “Ending Crime and Disorder” Executive Order” (utahnewsdispatch.com)

Presidential Executive Order

“ENDING CRIME AND DISORDER ON AMERICA’S STREETS” (July 24, 2025)

  • the right-wing think tank Cicero Institute was involved in advocating for the policies that ultimately shaped the Presidential Executive Order “Ending Crime and Disorder on America’s Streets”
  • The executive order shifts focus from housing-first to institutionalizing homeless individuals with mental health and substance abuse issues
  • Critics argue the order fails to address root causes of homelessness and may increase untreated mental illness and incarceration.

Response: Unpacking Executive Order “Ending Crime and Disorder on America’s Streets” (ensorahealth.com)

  • The Executive Order represents the most sweeping federal pivot toward compulsory treatment and criminal-justice integration since the 1965 Community Mental Health Centers Act redirected asylums toward the community.
  • In isolation, the order risks exchanging tents for jail bunks and psychiatric wards without tackling the root supply constraints of therapy, housing, and peer support.

Reference

2025-12-16 Article: 1,000 Utahns could lose housing under Trump’s homelessness priorities (kuer.org)

2025-12-11 Article: Miller family donates millions to aid Utah’s homeless (fox13now.com)

  • The recipient org (https://homelessutah.org/) is comprised of city and county mayors in the Salt Lake area. However I also recognize Wayne Neiderhauser from Utah Office of Homeless Services, who is a Non-Voting Advisor. He sits on the board of Utah Homeless Services Board Members (UHSB) along with Randy Shumway (executive committee chair), who is also the CEO of the Cicero Group.
  • See the Utah News Dispatch article below (Nov 24)

2025-12-08 Article: Cox wants lawmakers to put up millions for a massive homeless shelter that Utah is not yet sure how to run (sltrib.com)

  • “State officials have long followed a policy of getting homeless people into housing first, but now officials are weighing a system that focuses on behavioral health care and forcing more people into help. Such a pivot would put the state in line with a summertime executive order from President Donald Trump.”

2025-11-24 Article: Utah’s plan for massive homeless shelter draws heat from advocates, community leaders (sltrib.com)

  • When Gov. Spencer Cox was quoted in The New York Times saying Utah’s proposed partially involuntary homeless shelter is “a statement of who we are as a state,” Rev. Brigette Weier all but balked. “My Lord,” the minister said. “I pray that is not true.”
  • Shumway’s recommendations to respond to Trump’s executive order, calling for a “certified community behavioral health clinic” on the campus with 300 to 400 beds reserved for people who are civilly committed — or court ordered into mental health treatment. His proposal drew criticism and concern from some homeless advocates, who worried it would be wildly expensive and could create a chilling effect by building a civil commitment facility in direct proximity to homeless shelter beds.

2025-11-20 Minutes: UHSB Public Meeting

  • Stakeholder presentations included Devon Kurtz of The Cicero Institute, who proposed to reallocate grant funds from SAMHSA Protection & Advocacy for Individuals with Mental Illness (PAIMI), and request engagement of the US Dept of Justice to build a framework for expanded civil commitment.

2025-11-18 Article: Faith leaders, environmental groups push back on proposed homeless campus (ksltv.com)

2025-10-29 Article: In Utah, Trump’s Vision for Homelessness Begins to Take Shape (nytimes.com)

2025-10-02 Article: Utah homeless board proposes ‘initial framework’ to respond to Trump’s executive order (Utah News Dispatch)

2025-09-03 Announcement: State Legislators Respond to Proposed State Homeless Services Campus on Salt Lake City’s West Side (utahhousedemocrats.utleg.gov)

  • “With the Utah Homeless Services Board’s proposal of a new homeless services campus in the area we represent, we are concerned that this decision was made without any significant input from the public. As leaders and champions on issues of homelessness, we know how critical it is for our unhoused neighbors to have access to safe shelter and the services they need to regain stability. This campus is an important step in addressing the state’s homelessness crisis, but it must move forward in partnership with the people who will live alongside it.”
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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.

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“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 – twitter, linkedin, substack
  • 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) – instagram, twitter
  • Kim E. Nielsen – professor, author – linkedin
  • Lily D Moore – actor – twitter, instagram
  • Melissa Blake – activist, blogger, author – instagram, twitter
  • Rebecca Cokley – activist, author – twitter, medium
  • 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
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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.

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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.