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Carrie Seidman: To improve mental health care, listen to the families

The Herald-Tribune - 3/28/2019

March 28-- Mar. 28--With this week's release of a report assessing mental health services for youth in Sarasota County -- conducted by the University of South Florida and commissioned by the Charles and Margery Barancik Foundation and the Gulf Coast Community Foundation -- we learned ... well, mostly we learned what we already knew.

I joked to a friend at the invitation-only reveal to "community influencers" at The Academy at Glengary that I would happily have shared USF's $100,000 commission with any number of other parents who could likely have rendered the same evaluation. After nearly a decade of navigating Sarasota's mental health agencies to deal with my own son's illness and writing about the challenges I, and other families, have encountered, the report's conclusions seemed pretty obvious:

That the number of children and youth facing mental health challenges, many as a result of trauma, is on the upswing.

That we don't provide families with enough direction, support, services or financial assistance to help their loved ones with mental illness.

That the services available focus on crisis intervention, not early intervention or prevention, or on specific populations, such as the homeless or those already in recovery.

And that Florida -- which ranks 50th among the states, spending about a third of the national average per person -- so underfunds mental health that a modest estimate of the economic impact of untreated illness is more than $86 million annually.

This "environmental scan" has, to my mind, a couple of significant weaknesses, including its reliance on dated census data and a 16-year-old assessment of existing gaps in mental health service done by SCOPE (Sarasota County Openly Plans for Excellence), an organization that no longer exists.

But perhaps my biggest disappointment was what Dr. Norin Dollard, associate professor in the Department of Child and Family Studies at USF, director of Florida Kids Count, and one of the lead researchers, called a "disappointing response rate." Just two pediatricians, seven school district employees and 27 parents, caregivers or teens participated in surveys or interviews. Most of 51 stakeholder respondents indicated they worked in a mental health provider agency.

Two parents -- both mothers of teenage daughters with mental health issues -- spoke at the gathering, expressing their frustration at trying to find, afford and continue locally the long term services their children need. Ronni Blumenthal, who went into debt to pay for an out of state program, despaired after her daughter came back to Sarasota, where nothing was available to sustain her recovery.

"I can't tell you how many times, from the time my daughter came back to the community, I just kept saying, home is not going to be OK," she said. "She needs structure, she needs staffing, I can't do this alone. And there was nothing. Just nothing."

Another mother, whose daughter attempted suicide more than once, also bemoaned the lack of local residential treatment, as well as the total absence of group therapy, something so necessary "for kids who can't function socially." Both of these were services I also could either not find or not afford during my son's recovery.

I've heard those refrains from others who, desperate to find help, call a reporter simply because they don't know where else to turn. Based on their input, you could also add to our "needs" list: inpatient or outpatient treatment for anyone coming off a Baker Act or out of a hospitalization; early intervention programs to respond to a first episode of mental illness immediately; and navigators to help families find services, deal with insurance and apply for assistance.

Barancik President and CEO Teri Hansen admitted, "In this community, we like to study things" but assured that the report was just the beginning of her foundation's effort to "transform our system of care for these children."

"We just drew the starting line in the sand today," she said. "This is the start and it will take a long time."

What I hope what won't be left out of the mix as this effort moves forward is more direct input from families and consumers. That has proven essential to creating effective and responsive mental health care systems elsewhere, Dollard confirmed.

"Engaging families and family-driven consumer-driven care is the center of a transformational mental health system," she said. "Those systems that have made enormous change around the world have had parents and adult consumers at the center of that transformation."

John Annis, Barancik's vice president of collaboration and impact, said the next step will be to bring the report's findings to the Behavioral Health Stakeholders Consortium, a network of nonprofit and governmental agencies that meets monthly.

"We'll take these recommendations and set some milestones," Annis said. "These are the things we've identified, now how do we address them together?"

But even with an attempt to maximize existing funding streams, the challenge of covering all the bases will be stiff. Some of the most badly needed services -- like residential programming -- simply don't exist here yet. Of those that do, many can't begin to meet demand in a timely way.

"There shouldn't be any wait time because it leaves people when they are most vulnerable," said Dr. John Robst, of USF's Department of Mental Health Law and Policy and Department of Economics. "There should be structured intervention and direct follow up and programs set up to do that."

There is no question ours is a community of well-intentioned givers and doers; that this report was commissioned at all is ample evidence of that. But it will take more than good intentions to turn a splintered, insufficient mental health system into a smoothly running machine that intervenes early, runs long and doesn't let anyone fall through the cracks.

"A lot of people tried to be helpful," said Ronni Blumenthal, praising her daughter's school and therapist. "But in a community that has hundreds and hundreds of nonprofits, it's kind of stunning that it doesn't all tie together in a way that supports this part of the community."

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

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