One in five children between the ages of 3 and 17 have a diagnosable mental, emotional or behavioral health disorder, and access to behavioral health care in Florida ranks among the lowest in the nation.

Just eight years ago, Florida ranked 26th in overall mental health among states, but the 2018 State of Mental Health in America reports Florida had dropped to 33rd last year. Youth access to behavioral health care had dropped to 43rd. As access for youths has plunged, the prevalence of adult mental illness in Florida has risen to sixth in the country, according to the report. Half of all chronic mental illness begins by age 14 and the average cost to taxpayers over a lifetime is $1.07 million, according to the Health Planning Council for Northeast Florida, Jacksonville Sherriff’s Office and Mental Health Resource Center.

Neuropsychology was the top service line for internal referrals at Johns Hopkins All Children’s Hospital in fiscal year 2017 and demand remains high. The hospital rapidly is adding providers and expanding its services, but keeping pace with the need is challenging and expensive.

“Early intervention and screening have the opportunity to reduce costs by avoiding more specialized treatments in the future and educate children and parents on warning signs that will allow for earlier diagnosis,” says Jennifer Katzenstein, Ph.D., director of psychology and neuropsychology at the hospital. “Early identification and support for children and families at risk for mental health diagnosis is likely to significantly reduce the number of children diagnosed later.

“More than ever before, individuals are sharing their mental health diagnoses and stories. This reduction in stigma assists with parents and adolescents seeking care when needed; however, additional education on early signs, symptoms, and how to seek appropriate treatment is necessary to improve overall outcomes and improve quality of life.”

Addressing the Problem

The hospital’s Center for Behavioral Health has been developing a comprehensive, integrated approach to mental health care programming since the Institute for Brain Protection Sciences formed in 2015. It has expanded from two to three psychiatrists, three to 13 psychologists/neuropsychologists and added fellows and trainees to address specialized areas such as attention deficit hyperactivity disorder (ADHD), anxiety/mood disorders, autism spectrum disorders, neuropsychology/neurodevelopment, pain management, suicide and trauma-informed care.

“Capacity to identify and treat those in need necessitates collaboration across multiple systems and individuals,” Katzenstein says. “Health care providers, both primary care and specialist, must be prepared to work with systems that are typically separate, including schools, government agencies and communities. For health care systems, this may mean cross-system communication, sharing of information, and multi-tier treatment systems that cross-cut multiple systems and environments for each child’s daily life. This comprehensive level of care may be what it takes to address, and in turn, decrease, mental health diagnoses in children and adolescents.”

“We’re seeing great demand for mental health services at the pediatric level,” agrees Mark Cavitt, M.D., medical director of Pediatric Psychiatry Services at the hospital. “We offer evidence-based combined pharmacotherapy approaches to treating psychiatric disorders. We help patients and families understand mental health issues, achieve interventions and accommodations, and develop a life plan the carries throughout childhood and adolescence and into adulthood.”

Specializing by Illness

Psychologist Melissa Faith Ph.D., with Lauren, a patient in the Cancer and Blood Disorders Institute.

The Johns Hopkins All Children’s program emphasizes treating both the mind and the body, so it has psychologists and neuropsychologists embedded with specialized clinical lines to help patients and families cope with stress or to help monitor patients’ development. 

For instance, a psychologist and a neuropsychologist work with the neonatal intensive care unit and follow-up clinics to monitor post-partum depression and the physical and mental development of babies, especially those born prematurely or experiencing neonatal abstinence syndrome, which can result from a mother using medication or drugs such as opioids during pregnancy.

Another psychologist assigned to the hospital’s pain clinic works with patients on pain management with a goal of avoiding or reducing the use of opioids.

“Having embedded psychologists means we know the illness process better, we understand the treatment regimen better, we get to know our medical teams really well,” says Melissa Faith, Ph.D., who works with the hospital’s Cancer & Blood Disorders Institute. “It really benefits the patients, families and the team.

“There has been a nationally growing recognition that having psychologists specialize by illness group can be incredibly helpful for physical illnesses.”

Working with the Community

The Center for Behavioral Health recently hired an educational advocate to work with local school systems on behalf of patients who may need specialized education plans or other support.

The position, supported by a gift from Jabil Inc., and an additional psychology position the hospital plans to fill are part of an effort to extend the hospital’s services into the schools and the communities along the west coast of Florida that depend on the hospital for specialized care. The Jabil gift also will support the development of educational material that conveys expertise on mental health issues.

Another psychologist is developing a program at the hospital focused on trauma-informed care, which is a specialized approach to treating children who have experienced physical or mental trauma. Funded by a gift from the All Star Children’s Foundation, Kristin Hoffman, Ph.D., also is advising that organization’s efforts to develop the most effective treatment for abused children in a foster/residential setting through a program it is developing in Sarasota.

Johns Hopkins All Children’s also offers training, funded by a grant from the Cigna Foundation, for law enforcement officials in recognizing and communicating with youths and adults on the autism spectrum.

“As experts in the field, we have a responsibility to our patients with autism spectrum disorder to assure we are building community awareness regarding their unique strengths and weaknesses, and advocating for their needs in the community across the course of their lifespan from childhood to adulthood,” says Lauren Gardner, Ph.D., administrative director of the Autism Program. “I’m thrilled to be part of this program and eager to watch it grow to include other first responders including firefighters, EMTs, paramedics and teachers. Dispatchers are a significant part of the equation as well.”

A Vision for the Future

Access to care remains a challenge for families trying to address behavioral health issues. Children and young adults often go 10 years or more without diagnosis and treatment, according to the National Alliance on Mental Illness.

Through philanthropy and organizational and legislative support, the Center for Behavioral Health has raised about half of the $15 million needed for a plan to continue growing to address community priorities such as substance abuse and suicide prevention. Suicide is the 10th leading cause of death in the United States and suicide and self-inflicted wounds cost $69 billion in 2015, according to the American Federation for Suicide Prevention.

Ultimately, the Center for Behavioral Health plans to add the full continuum of care, from community-based initiatives to an inpatient facility on the hospital’s St. Petersburg campus, to round out a comprehensive array of inpatient and outpatient services.

“Mental health is a critical issue in our community, our state and our country,” Katzenstein says. “We need to address it with a thoughtful, comprehensive and evidence-based approach that benefits everyone in the long run. Our mission includes being at the forefront of developing and executing that plan.”