Colorado “Mad Moms” are fighting to stop the churn that traps their adult children in mental hospitals and jail

When the chaos seemed at its worst, Barbara Vassis created a spreadsheet to record the number of days her daughter spent in hospital emergency rooms, mental health facilities, homeless shelters, detox and jail. 

It was 106 days out of the previous 365. 

The pattern goes like this: Vassis’ daughter, who has schizoaffective disorder, doesn’t take her medicine or is denied medication, goes into psychosis, gets arrested and goes to jail, is released to the streets, is admitted to a mental health facility, is released on day 13 or 14 because her Medicaid insurance runs out on day 15, does OK for a few days or weeks and then stops taking her medication again. Repeat. 

This story is not unique. 

It’s similar to all the other stories told by parents whose adult children have serious mental illness and are cycling through the mental health and criminal justice systems. Like Vassis, the rest of the Mad Moms — a new and rapidly growing group of advocates for change — are fed up with a system they say is broken. 

“You have these crazy, ridiculous stories, but they’re not isolated,” Vassis said. “This happens again and again and again, and all of our stories are very similar. And what we hear from social workers is, ‘Oh, she kind of fell through the cracks.’ Well, there is nothing but cracks. It is one giant chasm that everyone slides through.” 

There is nothing but cracks. It is one giant chasm that everyone slides through.

— Barbara Vassis, Colorado Mad Moms

Mad Moms began organizing in Colorado over the summer and already has a network of about 200 people. It’s modeled after the Angry Moms, a national group that began in Arizona, where moms are raising a ruckus to push for new laws on mental health and have taken their testimony to the U.S. Food and Drug Administration’s drug safety and psychopharmacologic drug committees. 

The first mission of Angry Moms and the Colorado-based Mad Moms is to relax the rules around a drug called clozapine, which is used to treat schizophrenia and anosognosia, a symptom in which the brain is unable to recognize it is sick. Anosognosia is the reason why some people with mental illness don’t think they need to take their medication. 

The strict protocol for receiving clozapine includes weekly and then monthly blood draws and uninterrupted communication between the prescribing doctor and the pharmacist about the lab results. It’s so stringent, say the Mad Moms, that it’s nearly impossible for patients to stay on it or even to find a doctor willing to prescribe it. Because of the FDA protocol, only about 5% of people in the United States with serious brain illness are on clozapine, compared with about 85% in Australia. 

In November, after listening to expert testimony from doctors and the pharmaceutical industry, the FDA’s two committees voted to recommend that the FDA relax the protocol and open up broader access to clozapine. About 70 members of the Angry Moms and Mad Moms attended the hearing, and the vote followed emotional testimony from parents and people who take the drug, as well as pharmaceutical companies and medical experts. It’s not yet known when the FDA will take up the recommendation. 

“We have been gathering our stories and posting them at the FDA and making noise,” said Kate Rawlinson, the founder of Colorado’s Mad Moms. 

Nationwide, there are about 148,000 active prescriptions for clozapine — but experts testified that somewhere between 815,000 and 2 million people would benefit from the drug, which has been found to halt suicidal ideation. 

Rawlinson credits clozapine for bringing stability to her son’s life after years wasted in the jail-mental facility loop. She and her son protested in Washington, D.C., in May 2023 and met with members of Congress to push for new rules on clozapine. Two weeks ago, Rawlinson flew from Colorado to Maryland to attend the FDA committee hearing and watch the 14-1 vote. 

Parents shut out because of privacy laws

This was only step one for Mad Moms. There’s much more on their to-do list. 

The group is gathering data from its members that it will share with policymakers as they advocate for increased funding for psychiatric beds and higher salaries for mental health professionals. 

The moms want to end the “criminalization” of their sons and daughters who end up getting arrested for crimes like disturbing the peace or breaking and entering. 

And they want to make it easier for family members to provide basic health information to mental health and criminal justice facilities instead of getting blocked by federal privacy laws, including HIPAA. They also want the mental health and justice systems to use universal ROIs, or releases of information, so the agencies can talk to each other about people in their systems. 

Mad Moms already has shared its requests with Colorado’s Behavioral Health Administration, and meets regularly with state Rep. Judy Amabile, a Boulder Democrat who passed legislation this year to divert people accused of low-level crimes into mental health treatment instead of requiring them to be “restored to competency,” a process for which the waitlist is months long. And Mad Moms has secured funding for its work through the Colorado Nonprofit Development Center. 

Besides all that, Mad Moms is a support group. They gather on Zoom, share their stories and realize they are not the only ones. 

“I don’t often leave one of our Zooms without just crying afterwards, because what people are dealing with, it’s just unreal,” Rawlinson said. “And none of us expected it. Most of us had children who were very functional, if not gifted and talented. 

“We are here as a support network for other moms and families, trying to help them navigate the systems and keep them from feeling alone. The biggest problem is that most of us feel so alone because our families shun us, our neighbors shun us. They don’t want to hear about it. They’re afraid to invite us to events. It becomes really, really difficult.”

“It’s not individual problems — it’s systemic problems”

Rawlinson’s son had a high IQ and was a talented double bassist and composer. His brain issues began in high school, when he started struggling with severe anxiety and experimented with drugs, Rawlinson said. Illnesses on the psychosis spectrum, which includes Alzheimer’s and schizophrenia, run in their family. 

Rawlinson got her son enrolled in an Outward Bound program, counseling and a new high school, but none of it worked for long. At age 20, he was diagnosed with schizophrenia. 

After going off his medication, he assaulted a family member and ended up in jail for six months. Rawlinson attempted, unsuccessfully, to get him moved to the state mental hospital. He came out of jail in the best shape he had been in in eight years, Rawlinson said, because he was on his medication and had received counseling. 

But soon after, he began using drugs again and ended up losing his job and housing. He lived on the streets, getting blacklisted from hotels, throughout the height of the COVID pandemic. 

What finally changed the pattern was clozapine, along with a court diversion program that required he stay on his medication and meet weekly with a case manager. Also, Rawlinson once again gave him a stable place to live. 

Her son, 31, has been taking the drug for more than two years and lives in Rawlinson’s guesthouse, though he is hoping to move to an apartment of his own. “He’s sober. He works part time. He’s social,” she said. “He is more my son than he’s been in 15 years.

“It’s just like watching them wake up.” 

After five or six months on clozapine, a “tricky medication” that requires titration to get the correct dosage, Rawinson’s son accepted that he had schizophrenia. The “basic human interactions,” like saying “How are you?” and “Good morning,” that he is incapable of during psychosis resurfaced. 

We’ve got to figure out how to stop the churn.

— Kate Rawlinson, Colorado Mad Moms

“I had to learn a lot fast, and there was just not a lot of help out there,” Rawlinson said. “So we want to provide education. We also want to advocate for radical change, in terms of health care, in terms of the judicial system, in terms of all the social services, just fair treatment. And it’s just not happening. We’ve got to figure out how to stop the churn.

“It’s not individual problems —  it’s systemic problems.”

“Cannot confirm or deny”

Over the summer, Vassis believed her daughter was in the state mental health hospital at Fort Logan in Denver, though she couldn’t confirm it. When she called, she got the “we cannot confirm or deny” that she was there, Vassis said. 

Vassis finally confirmed she was there because her daughter agreed to let her visit. 

Her daughter, 34, lives in a state of delusion in which she believes she is a high priestess, working to heal the universe, align communications systems and open trade routes. She also thinks she designs shoes, and works for the CIA, and has $800 million in her bank account. 

Because she refuses to take medication, her life has been in chaos for more than a decade. 

Vassis’ daughter had a major psychotic break at age 21, when she was found clinging to a tree in a subdivision and was taken to a Boulder hospital. She was allowed to leave on her accord, even though her mother argued that she needed more help. 

One of Vassis’ spreadsheets recorded nine hospital stays for her daughter within one year. Six times out of the nine, she ended up in jail within three days or less of being released from the hospital. 

Vassis would find out she was no longer in the hospital when her daughter called from jail. Or a homeless shelter. Or a bus station. 

“I would call the hospital and say, ‘This is what’s been going on. Here’s how many times this is occurring.’ And of course, it’s like, ‘We can’t really talk to you,’” Vassis said, referring to privacy laws. 

After another psychotic break in 2017, Vassis’ daughter ended up in Fort Logan, where she stayed for two months. She did well for years afterward, until COVID disrupted her routine, her mother said. 

Last year, Vassis’ daughter spent three months at the Colorado Mental Health Institute in Pueblo. She’s now gone through nine rounds of the state trying to restore her to competency, but has not yet been deemed restored.

Vassis counts 12 times that her daughter has been to jail. Most recently, it was because she broke into her mother’s house — five days after she was dropped by her mental health clinic for missing appointments. She stole several items and brought them to her boyfriend’s storage locker, Vassis said.

In jail, she is allowed to refuse to take her medication.

“Colorado recognizes that she has a mental illness as a disability, but yet, when she’s in the carceral setting, she’s allowed to refuse her medication,” Vassis said. “So in essence, I feel like the state of Colorado is allowing her to remain in psychosis.

“It’s just this cluster of trying to find help.”

It was in 2021-2022 that Vassis’ daughter spent 106 days out of 365 either in jail, the hospital or a mental health facility. Vassis figures the churn has cost taxpayers hundreds of thousands of dollars, at this point. 

The cost of this cycle is one of their future talking points. Inspired by the Angry Moms in Arizona, the Colorado Mad Moms were among the first of the state groups to organize, starting with a logo, social media sites and a biweekly newsletter. 

It was the hard work of moms around the country, Rawlinson said,  that “has inspired us to muster the energy and make some noise.”