Carrie Seidman: Act early, pay less on mental health issues

May 30-- May 30--Nev Jones was 27 and beginning her doctoral studies in philosophy at DePaul University when she began experiencing disturbing cognitive, memory and perceptual issues. She confessed to a friend her increasing confusion and her fear that she might have inherited the schizophrenia that had plagued a relative. But she was reluctant to seek help within a Western medical system that treats psychosis as permanent and disabling, and a culture that stamps those who experience it as rejects and outcasts.

Her first consultation -- a visit to a large hospital emergency room -- confirmed her reticence. A nurse, unqualified to make a diagnosis, declared her schizophrenic and said Jones' friend should have taken her to the state psychiatric hospital, a lockdown facility for the indigent, instead.

That encounter was, unfortunately, all too typical. A young person in this country first experiencing psychosis is often treated like a pariah, instantly cut off from friends, work, social networks and any sense of identity, dignity and self-worth. In many cases, what follows is years of medical mismanagement; inadequate, uneducated or insensitive treatment; unemployment; and a gradual diminishment of opportunity, goals and quality of life.

Jones, now an assistant professor in the Department of Mental Health Law & Policy at the University of South Florida and a renowned expert on how culture shapes psychosis -- escaped that fate. Why? Because at the time she happened to be in Chicago. And Chicago happened to have one of the earliest Early Intervention in Psychosis (EIP) programs in the nation.

Instead of waiting endlessly for appointments and experiencing the fragmented, ineffective care typically offered to someone with her symptoms, Jones received rapid access to comprehensive and coordinated treatment, provided by a staff highly trained in psychosis-focused interventions, all located in one place. Moreover, the services weren't contingent -- as psychiatric care often is -- on having a previously established diagnosis or disability status.

Jones called the clinic at 8 p.m., the director answered the phone herself, and she got an appointment for 7:30 a.m. the next morning. The five-day-week program she entered (with someone on call all weekend) included medical management, talk therapy, peer and family involvement, social opportunities, employment and education support and compassionate clinicians who respected her intelligence and saw her as a partner in her recovery.

"This is a huge difference from what is typical in the U.S.," Jones said at a recent "Resilience & Recovery" forum sponsored by Sarasota County's NAMI (National Alliance on Mental Illness) chapter. "Before, I had been told to my face I was a schizo, that I should have gone to the state hospital. You're immediately labeled as this sort of throw-away person. ... It was really a night and day difference."

EIP and Coordinated Specialty Care (CSC) clinics like the one Jones participated in have documented success in treating not only schizophrenia, but any of the "huge range and spectrum of psychosis" that cuts across most psychiatric diagnoses, Jones said. If accessed during the "prodromal" period leading to a first psychotic break or within the "critical period" of first five years following onset of a mental illness, these clinics represent the best hope of permanent recovery and avoiding lifelong issues like homelessness, unemployment, reduced life span, suicide and isolation.

"The more time psychosis goes unaddressed, the risk goes up of school and work failure, social rejection and criminal justice involvement," Jones said.

Not surprisingly, Florida -- which spends less per capita on mental health than almost any other state -- is far behind the curve in creating such programs. (Florida also lacks any university offering evidence-based training specifically related to psychosis.) At present the state has five EIP clinics -- in Lauderdale Lakes, Panama City, Hialeah, Del Rey Beach and Middleburg -- with two more (Tampa and Orlando) about to launch.

All of them are funded (in part) by a 10 percent federal set-aside for mental health that "is really only enough for seed money," Jones said. States like California, which has 37 clinics (with 10 more in development) and New York, which has 11 (set to more than double by 2021) have designated funding from their own state budgets.

Even the best programs in this country don't come close to offering the range and excellence of services available in places like Australia, Canada and England. The U.K. alone has more than 100 EIP sites and Australia offers a half dozen of the newest and most promising therapeutic modalities.

"There's nothing like that here," Jones said. "All of this exists elsewhere, but if you have a child experience psychosis in Florida, you're out of luck. That's a pretty serious social justice issue. For this very disadvantaged population socially, we have all tacitly agreed that it's OK -- and our politicians and health care system think it's OK -- not to provide services."

This year, the Florida legislature focused its mental health expenditures in two areas: opioid addiction treatment and mental health counseling focused on school safety, which received a $75 million appropriation. The former came in response to soaring fatalities from overdoses, the latter in reaction to last year's school shooting in Parkland, which killed 17.

I guess you could call the increased funding progress. But seen through another lens, it could be considered just more of the same. By that I mean, what little money Florida gives to mental health has mostly gone to the emergency/crisis end of the spectrum, which tends to be the most expensive and least effective investment. What if we started seeing the value of models like EIPs and CSCs, which produce significantly better results for a fraction of the cost?

We can continue to pay down the road for our negligence. Or we can choose to be pre-emptive, in the hope of heading off long-term financial drain. And oh, by the way, also saving lives.

So far, Florida has opted for the former. And just look where it's got us.

Contact columnist Carrie Seidman at carrie.seidman@heraldtribune.com or 941-361-4834. Follow her on Twitter @CarrieSeidman and Facebook at facebook.com/cseidman.

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