America’s Failure To Treat Psychosis Has Turned Patients Into ‘The Lepers of Society’
- Zoe Beketova
- 3 days ago
- 8 min read
It was a warm summer afternoon in New Haven, Connecticut, in 1998 when the DeGregorio family gathered in the garden, the scent of sausages and charred vegetables lingering in the air.
It was the kind of afternoon that is meant for laughter and conversation. Suddenly, without warning, their then 15-year-old daughter Melanie* broke down, screaming, inconsolable for hours.
That was the start of the DeGregorio family’s long and tiresome battle with psychosis.
Melanie left her first doctor’s appointment with a life-altering diagnosis: schizophrenia. A psychotic disorder, schizophrenia is marked by experiences of distorted reality. The person may experience hallucinations or start to believe things that aren’t true, such as perceiving danger where none actually exists.
“She took us on a journey through Alice in Wonderland,” her father, Marc, said. “You go through the looking glass, and you don’t come back out. We were in uncharted territory. We had no idea what psychosis was.”
Psychosis can also involve depression and paranoia, and struggles with memory retention or forming coherent sentences. This means that basic aspects of life — showering, grocery shopping, healthy social interactions — can become out of reach.
Marc was able to find a supportive hospital for Melanie, where she was admitted for 18 months. (Hospital stays for psychosis can range anywhere from a few days to over a year.) After a year and a half of 24/7 care, she was determined to be stable enough to return home to her family.
However, Marc’s jaw dropped when he worked out the price for his daughter’s care: $800,000. Almost $1,500 per day. Luckily, a determined attorney was able to transfer the costs onto Connecticut’s Medicaid program, Husky.
The family breathed a sigh of relief. The story should end here, with a persistent father, a skilled healthcare unit, and a generous health insurance system coming together to help a young girl regain her life.
But it doesn’t. Today, both emergency rooms in New Haven know Melanie by name. She has been in and out of more than 10 hospitals and residential facilities. Marc has spent thousands of dollars in legal fees fighting to keep her in treatment when medical practitioners deemed her case too arduous.
“My daughter luckily has a bed. But, I worry every week: is it going to be sustained?” Marc said. “Parents of these kids or family members who have to take care of them are never at rest.”
Psychosis affects three out of every 100 people in the United States; yet a study shows that 20 percent of affected individuals and their families who were surveyed say they felt like no one helped them. This number grows higher within minority groups; Asian American families are the least likely among all racial groups to use or fully benefit from mental health services.
Mary Arnold has spent over a decade navigating America’s underfunded and understaffed healthcare system, seeking care for her son Thomas* in Connecticut. Early in this journey, the Arnolds found a nonprofit in Middletown, where healthcare workers spent a lot of time building a trusting relationship with Thomas and Mary. For five years, the same staff members took Thomas out to socialize, go shopping, and even try fishing. For the first time in years, their family felt a fragile sense of stability. Tentatively, life seemed good, Mary admitted.
Then, without warning or explanation, Thomas’ care was diverted to a state-operated mental health agency. Outside of medication, Thomas had no consistent support from caseworkers, who were constantly changing. Unable to manage his symptoms alone, Thomas was back in the hospital within three months. He returned four more times in the next year.
“Unless you can have a sustained program that will make that long-term journey with them, it’s all for nothing,” Marc DeGregorio said.
Challenges for those with psychosis extend beyond just clinical care. Individuals may struggle to maintain a job or social support networks, often withdrawing from their families and friends and spiraling into homelessness. When an individual falls into that gap, climbing out becomes nearly impossible: in some parts of the country, supported housing waitlists can stretch for tens of years.
Melanie has been evicted from multiple housing facilities: sometimes because they thought housing Melanie was “too difficult,” and sometimes because the center itself lost funding and closed prematurely. One especially painful eviction episode, Marc recalled, involved Melanie being forced out of a facility because her symptoms made her unable to complete the shared household chores expected of residents.
Keeping their child at home is also not an option for parents, because it indicates that their child is “not sick enough” to receive mental health services, said Karen Desjardins. Her son Brian* felt isolated and paralyzed from the intense paranoia his condition brings.
“Every single resource that I called to say, what can we do about this, how can you help? They said, you need to make him homeless,” Karen said. “That is the way that he is going to get into the system.” Because Brian had a loving home to live in, he was low on the priority list for crisis centers and mental health providers who prioritize people they deem to be in immediate danger for their limited resources.
“You can’t get housing,” Marc said during a conversation, exasperated. “They dump them out of hospitals into the street, put them in shelters.” He feels at a loss; there seems to be no housing resources available in America.
Up north in Maine lives Tara Fitzgerald’s 40-year-old sister, who cannot be alone because her paranoia makes her believe that her employers wish her harm. In Wisconsin lives Sarah Mard’s* 65-year-old brother, whose psychosis makes him so afraid that he once called her 260 times in one day. In New York, Shannon Lee* pays over $15,000 a year for her son Jon’s care.
Experiences like these could fill up reams of pages. While speaking to over 30 families affected by psychosis, I kept hearing one term over and over: holistic healthcare. For a condition such as psychosis, where those affected grapple with isolating symptoms such as hallucinations and paranoia, a holistic care system can create stability and consistency in several parts of their lives. It can look like anything from helping affected people rebuild their social skills to finding them stable work and long-term housing.
“Every single resource that I called to say, what can we do about this, how can you help? They said, you need to make him homeless. That is the way that he is going to get into the system.”
Without this kind of care, recovery is difficult. Consider a case where an individual is recovering from a stroke. While medication can address immediate concerns, full recovery involves physical therapy, speech therapy, and emotional support. Each aspect of care is considered to be necessary for a full recovery, and no single approach is sufficient on its own. So, when it comes to psychosis, why does the healthcare system operate as if medication alone is enough?
To address this need, psychologists have developed a system called coordinated speciality care, which consists of five interconnected treatments: medication, therapy, case management, family support, and employment support. Many such programs also include housing support. Research has shown that coordinated speciality care delivers significantly better results compared to traditional medication-focused methods of treatment.
In other countries, such as Australia and Sweden, scientists have found that holistic services are also cheaper than traditional treatment methods and tend to reduce hospitalizations and emergency room visits. If America’s systems for psychosis care were to adopt coordinated speciality care, up to 800,000 more suffering individuals could be supported, saving the federal government up to $140 billion.
Still, holistic services for psychosis care are nearly impossible to find in America. “Even though laws have been passed, we're still not in a place where mental health is seen the same way and reimbursed the same way as folks are with medical conditions,” said Joseph Navarra, president of the Connecticut division of the National Alliance on Mental Illness.
Currently, around 350 coordinated specialty care programs operate in America. Washington state has 17 teams providing holistic psychosis care, maintained through state and federal funds at an annual cost of around $550,000 per team. Remember the price Marc was quoted — $800,000 — for 18 months of his daughter Melanie’s care? That money can fund an entire team of holistic mental health care practitioners for over a year.
“America has a passiveness about taking care of almost every chronic illness.”
But the lack of federal funding towards American healthcare poses a huge threat to the country’s already-crumbling mental health system. In some states, nonprofits comprise 75% of the state’s mental health care system. “If nonprofits get hit, that’s a huge blow to our mental health system,” Navarra said.
Psychiatrist Michael Vollmar said the lack of nationwide holistic care for psychosis results from an unwillingness by the American government to foot the initial costs of setting up these systems. “America has a passiveness about taking care of almost every chronic illness,” he said. The Xylom reached out to the federally-run National Institute of Mental Health, but they did not respond due to the recent government shutdown, which left about 750,000 federal workers on unpaid leave.
Despite all the barriers, Marc continues to advocate for those suffering from psychosis. “We are the lepers of this society,” he said. “It incenses me to no end, even in my older age. I'm over 70, and I’ve been at this for a long time, but I don’t lose the fire to fight because you have to make noise.”
Nonprofits across the nation also work tirelessly to provide elements of holistic care. In Connecticut, Adam Christoferson runs the center Musical Intervention voluntarily on a shoestring budget to provide support by allowing anyone to come and create music. The program collaborates with Dr. Philip Corlett at Yale University’s Department of Psychiatry, whose research examines how music-making supports people with psychotic illnesses.
“After the session is over, and everybody's expressed themselves and made some music, they’re kind of like little schoolgirls, just super happy,” Christoferson said.
Psychologist Al Galves intends to provide housing and care for those in crisis that is cheaper and better than a hospital through his upcoming project in New Mexico, Soteria Las Cruces, where he wants to build a safe and supportive community. His understanding of psychosis is driven by the understanding that the condition “is a move by a wounded psyche towards healing and recovery.”
Run by 24-hour non-uniformed staff in rooms with soft lighting, and a total annual operational cost of $800,000, this new center aims to treat 40-50 people every year, creating an affordable care option.
In the meantime, those who can’t yet access care are hanging on. Thomas Arnold now lives in a sober home facility where his mother, Mary, visits him weekly to cook dinner together and help him find a job. Jon Lee is cramped up in his mother Shannon’s New York City apartment, who chews her nails when thinking about affording her son’s care when she retires. Brian Desjardins, now 28, has been missing for a while. He was studying to become a mechanical engineer. His psychosis led him to believe that people who tried to help were tricking him, causing him to run away from home. He cut off all contact with his family, including with his mother, Karen.
Marc DeGregorio is currently transitioning Melanie to another residential care home, desperately hoping this one will stick. He has dedicated his time since his retirement to helping out other families affected by psychosis and teaching them more about the condition.
“The kids that are not born yet, all these little babies that are being born now, some of them are going to be schizophrenic,” he said. “What are you gonna have for them? The same crap that we had to put up with?”
(*Names changed to maintain privacy)
