'I Never Thought That Would Happen in Our Family'
Behind the movement for early discovery and treatment of kids with emotional problems
by Jennifer Reed
Thirty minutes or so into a conversation in the family room of her North Naples home one Tuesday night, Maria Leon looks to her husband, Nelson, and then to their 16-year-old daughter and suddenly remarks: "This is perfect! How nice, how fresh is this to see you talking so nicely and without behaviors."
Stefany, seated on the couch next to a visitor, is an effusive high school junior with a demeanor that comes across as bright and refreshingly girlish, making her mother's comment somewhat quizzical—at least for the visitor.
Stefany ignores her mom and continues talking about her career and college interests. But the conversation circles back to the behaviors, which was really the purpose behind the evening's gathering.
As recently as a few weeks ago, parents and daughter admit they battled each other. At the lowest, worst moment, Maria called police to help her restrain her raging child.
"I never thought that would happen in our family," the mother murmurs.
There's more at play than the friction that occurs anytime you have a headstrong teen and hands-on parents, including a life-changing medical diagnosis that Maria believes lies at the heart of the strife.
Their healing has begun. What's helped drive it—aside from the family's determination—are their twice-monthly visits to a psychologist who works in tandem with Stefany's pediatricians in a practice that has declared "Enough!" to the American health care system's neglect of children's psychological health.
Now that practice, Healthcare Network of Southwest Florida, has teamed up with the region's biggest mental health and pediatric providers to form a plan that could radically change the way Southwest Florida treats children's mental health needs.
The CEOs behind it (Mike Ellis of Healthcare Network; Scott Burgess of the David Lawrence Center; and Stacey Cook-Hawk from Lee County's SalusCare) are pushing for the establishment of a primary care system for the mind, making emotional checkups as much a part of a pediatric visit as a vision screening and starting treatment, if needed, right there in the doctor's office.
Dr. Rosemarie Pezzullo (left) works with psychologist Dr. Joyce Pallens (right) at Healthcare Network of Southwest Florida to ensure children's physical and psychological needs are met.
"You can imagine what most people think when they hear, 'I want to send you to a psychologist.' They instantly get this picture. 'You think I'm crazy?'" says Dr. Scott Needle, who is Healthcare Network's chief medical officer and, along with Dr. Rosemarie Pezzullo, Stefany's pediatrician. Three-quarters of parents ignore doctors when they refer kids to a mental or behavioral health specialist. It's different when a psychologist shows up in the exam room, as Dr. Joyce Pallens does when Needle or Pezzullo flag her down.
The practice of marrying physical and psychological health is known as "integrated care." Healthcare Network began its pilot project about four years ago with a grant that allowed it to hire specially trained psychologists from Florida State University, and an agreement with the David Lawrence Center that the practice would manage less acute cases in-house, freeing DLC to focus on the children needing intensive treatment. Armed with data and success stories, the executives are beginning to meet with health care providers across Collier and Lee counties to encourage replication.
Half of all mental illnesses in America show up before age 14. Yet children suffering from them go an average of eight to 10 years before they get help.
In that respect, Stefany is one of the lucky ones. Her current doctors recognized that along with treatment of her physical illness, she needed emotional and behavioral support.
Five years ago, Stefany was diagnosed with juvenile idiopathic arthritis, an autoimmune disease for which there is no cure. When the disease is latent, she leads a normal life. When it flares, the pain forces her to bed.
Stefany enjoying dinner at home.
"A lot of doctors thought I was crazy," she says, thinking back on the physicians she saw before her diagnosis. "They thought I was making things up. One sent me to David Lawrence Center to see a psychiatrist."
"Do you remember what the psychiatrist said?" her mother asks.
"I could never forget! She said I'm not the crazy one. My doctor is for referring me to her!"
The doctor who ultimately diagnosed the arthritis dropped the news on the family like a bomb.
"Everything started when the first doctor said you have a condition that cannot be cured," Maria says. "Doctors need to learn to say things in different ways to their patients."
"I'm not going to lie. It was a lot easier on me than it was on my parents," Stefany says.
Her mother isn't so sure, remembering her daughter's tears that evening. And the "last will and testament" she penned, her dad recalls. Stefany laughs. "Oh yeah, I made that!"
But then the girl's voice quivers. "When I saw my dad crying in the living room, that's what made me cry. That's what I remember. That's the first time I had ever seen my dad cry in my entire life. … I accepted (the diagnosis), but I knew my parents would not give up on trying to find a cure."
Her mom is teary now, too. "It's a lot she has to handle. A lot." The disease affects Stefany's heart and thyroid, as well. Meanwhile, the family is also managing the health of their 13-year-old, Cindy, who has a different strain of juvenile arthritis, one that is more acute at the moment but has a better prognosis than her sister's overall.
Even though Stefany doesn't always think so, the disease may underlie what are otherwise commonplace family squabbles—disagreements over clothing choices or cellphone use or eating habits or social life.
As the conversation continues, it's evident that worry drives Maria's maternal fussing.
"Yes," concedes Stefany, considering her mom's insistence on habits such as good sleep and proper nutrition. "That is one reason why there is tension between us. My parents take it very literal, not necessarily over-exaggerate because I know it's a big deal, but kind of go above what I think is necessary. I'm fine. I feel fine."
Other challenges reveal themselves—Stefany's self-described obsessive-compulsive tendencies, her sense that her immigrant parents sometimes see the world much differently than she does, and her mom's penchant of trying too hard to accommodate her daughters' whims.
Maria and Nelson had pulled their girls from the practice with the insensitive doctor. They enrolled them at Healthcare Network, where Dr. Needle sent Stefany to a rheumatologist for specialized care and suggested the family start seeing the in-house psychologist, first Dr. Molly Coates and now Dr. Pallens.
"I learn from listening to the doctors," Maria says. "I love them. They are part of our lives."
Related: Chloe's Trauma and a Lesson Learned
The neglect of children's psychological health has been long-discussed but only recently addressed in Southwest Florida. Mike Ellis first learned about the struggle back in the early 2000s when he was the chief administrative officer for the Children's Hospital of Southwest Florida and a juvenile court judge invited him to lunch one day. At the table were some 15 women, mothers of children with mental illnesses. "They basically said, 'We need help.'"
Ellis tried to shake up the system, but the region's mental health organizations were consumed by adult needs and wary of collaboration. "It was sort of a wall," he says. "There was nothing I could do at the time. But it always sat in the back of my mind and bothered me."
By the time he got to Healthcare Network in 2013, he found Collier County's movers and shakers ready to tackle the situation head-on. The Naples Children & Education Foundation had commissioned a study and found that mental health care was among the top needs for Collier's children. It devised and funded a new approach to delivering care—the forerunner to the larger, regional network now proposed.
The initiative, dubbed Beautiful Minds, involves Healthcare Network, which employs about two-thirds of Collier pediatricians; the David Lawrence Center; and Florida State University's Immokalee campus, whose director, Dr. Elena Reyes, is a clinical psychologist specializing in child psychology and integrated health. Collier's school district and National Alliance on Mental Illness chapter also played parts.
FSU launched a postdoctoral program that trains psychologists to work in pediatric practices and developed screening questionnaires for both children and mothers, knowing the trickle-down effect of maternal depression. Healthcare Network doctors, meanwhile, learned to administer those screenings, detect the psychological red flags, share cases with their new mental health partners and how to prescribe psychiatric medications, drugs they have generally avoided for lack of training. David Lawrence Center used its share of the NCEF grant to add advanced services, including a partial hospitalization program for all-day therapy.
Upending health care is a delicate process, which is why no one should expect to see other practices adopt changes without much deliberation.
"It's a process," says the David Lawrence Center's Scott Burgess. "You can't just flip a light on."
Healthcare Network started with one psychologist in one pediatric office, Ellis says. Shortly thereafter, the idea caught fire.
Today, Healthcare Network embeds psychologists in all 16 of its pediatric and adult medicine practices. In its pediatric division, practitioners logged 4,606 behavioral health visits in 2016, up from 964 in 2013. As the Leons' experience shows, you don't need a complex illness like bipolar disorder to benefit from help. Psychologists at Healthcare Network have helped children come to terms with divorces; adapt to new schools; manage ADHD; change unhealthy eating habits; and deal with bullying, school anxiety and social isolation.
"How many people walk in and out of the pediatrician's office have these secrets or stressors, or they are in emotional pain?" says Dr. Emily Ptaszek, a psychologist and the chief operating officer for Healthcare Network. "If we don't ask about it, they're not going to reveal it. We're the ones who set the tone for what to expect at the doctor's office."
Related: The Lingering Effects of Childhood Traumas
A year ago, Ellis again broached the idea of a multi-organization approach to improving children's mental health, and this time he found a much more receptive audience. Burgess jumped on board. So did Stacey Cook-Hawk of SalusCare.
"We go to Tallahassee and we ask for money and we explain how the system is not well-funded and the reality is, it's the region's responsibility to take this on," she says. "Rather than looking at it as individual organizations, a collective impact model is truly one that can change a system."
The three CEOs roped in the Golisano Children's Hospital of Southwest Florida, where Dr. Emad Salman, the Regional Medical Officer for Golisano Children's Services, and hospital Chief Administrative Officer Armando Llechu had already started trying to figure out how to add much-needed psychiatric services to their roster of specialty care, including finding a way to keep the most critically ill children in Southwest Florida rather than sending them elsewhere for residential care.
Mark Ellis (back, left), Stacey Cook-Hawk, Scott Burgess, Armando Llechu and child advocate Doug Campbell discuss the next steps in the Regional SWFL Children's Behavorial Health Coalition.
"When I got here I heard there was a lot of ruminating on the problem, and I said even if we don't fix the entire problem we need to do something. We can't just keep acknowledging we have a problem and having these kids age out (of pediatric care) and becoming even more sick as they get older," Llechu says. Some 90 children between July 2016 and July 2017 landed in the hospital under the Baker Act, many needing emergency medical attention before transferring to a mental health organization. "For a non-Baker Act facility, that's a really big number," he says.
If ever kids needed help, it's right now.
One recent headline-making study by San Diego State University found rates of depression among teen girls jumped 65 percent between 2010 and 2015. Researchers attributed it to the pervasiveness of cellphones and social media.
In Southwest Florida, the rates of children hospitalized for psychiatric evaluations under the Baker Act have skyrocketed: a 170 percent increase in Collier between 2010-11 and 2015-16 (No. 1 in the state) and a 136 percent increase in Lee (No. 4).
Rates of suicidality and self-harm have doubled nationally between 2008 and 2015, and kids are getting seriously ill at younger ages. SalusCare admitted a record 122 children last May through the Baker Act; the David Lawrence Center recently doubled its children's crisis unit to accommodate community growth and growing psychiatric need.
"I think this is a tsunami we haven't even seen the tip of," Burgess says. "I think everybody anecdotally recognizes it's problematic, but now we're seeing the evidence."
Just before the holidays, Ellis was getting ready to present the integrated medicine concept to Healthy Lee, a multi-organization community advocacy group, and to Lee County's pediatric practices (he had already visited with the Collier practice that sees most of the county's remaining kids). He was laying plans to embed a psychologist in practices that wanted a trial run before going full-throttle into integrated care and chasing grant money to provide a roving psychologist to help Collier pediatricians who are not employed in his organization.
Related: 10 Reasons We Need to Worry About Children's Mental Health in Florida
At Dr. Pallens' advice, Nelson and Maria summoned Stefany and told her they were drafting family rules in order to establish clear expectations.
"I was so nervous," Stefany admits of that night.
But the family agreed something had to change. And now, several weeks later, they agree the mood in their home has lifted.
"She's taught me things about myself that help me calm myself down," Stefany says of Dr. Pallens.
Maria says she is changing, too. "Now I am more open. I am more flexible." She's learning to loosen the reins so her daughter can develop the independence necessary for college and adulthood.
It's hard to say how the family's story might have unfolded if it weren't for their doctors' intervention. Stefany jokes that she might not have suffered through a cellphone confiscation, a doctor-advised penalty for a poor decision. But her mom, in more seriousness, offers this:
"How would my life be without them? I think it would be totally different. I think I would not be laughing."
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