Bridging the gaps in providing care

Health providers call for more beds for emergencies, stronger ties between schools and care providers and therapy that begins at home.

[Times photo: Stephen Coddington]

Michele Roper waits with her son Joey, 9, at the Comprehensive Behavioral Institute in Crystal River as she schedules an appointment.

Her son was different. His attention span barely spanned. In class, his shoelaces and school supplies occupied him more than the work at hand. He fidgeted and broke pencils, frustrated by an adversary more elusive than a schoolyard bully.

The signs that something was wrong with her son stacked up, yet Michele Roper wouldn't admit it. At least not consciously.

Within, her maternal instinct was more honest, driving her to spend nearly every day of four school years with Joey at his desk. Something inside her shouted that her little boy was struggling through life in his own frustrated world.

"He was lost, completely lost," she said. "He was so upset about it."

The devoted mother of two thought that steadfast, tender loving care could pull him out of it. Four years of wasted class time and long afternoons and evenings at home catching up on the day's tasks and subsequent homework proved her wrong.

Joey might very well have spent third grade just as he had spent the turbulent years before it had not a combination of exhaustion and wise counsel brought Michele Roper to a place she had avoided passionately: the office of a behavioral specialist.

Enter Dr. Esther Gonzalez, a Crystal River pediatrician with a knack for smoothing the rough edges of mental disorders that upset the lives of her young patients.

With a diagnosis for Joey's condition, attention deficit hyperactivity disorder, and the proper medication - just one pill a day - Roper says the doctor turned her family's life around.

"It's a miracle," she said.

"One little tiny pill is all it took after everything I fought for."

Gonzalez also taught an important lesson: Mental and behavioral disorders in children aren't easy to cope with and can be even harder to accept.

As Roper said, "Your children can do no wrong."

Getting the right services is key to a better life for the child and a healthier community. Ensuring they exist is another story.

Confronted by too many gaps in mental health services for children in Citrus County, health providers are looking for stronger ways to help those wading through the complicated, tumultuous waters of mental disorders.

Positive solutions are forthcoming: more beds for mental health emergencies, stronger relationships between schools and care providers, and the revival of an intensive therapy brought right into a child's home.

With at least one in five children suffering from a mental problem that threatens additional troubles without treatment, providers realize the remedies can't come soon enough.

Tom Neaman used to send a list each month to the Department of Children and Families' division for mental health services. In it, he detailed what services Citrus County needed for children.

As the coordinator of one of the Children's Assessment and Resource Evaluation Teams unique to District 13 in Florida, he was intimately familiar with the gaps.

The district established the CARE teams in April 2002 to coordinate community-based resources and support services for children at risk of being taken from their homes because of emotional or mental problems.

Each of the five counties in District 13 - which includes Citrus and Hernando - has a team consisting of a mental health consultant, family specialist, case manager and other care providers who work to stabilize clients through an individualized service plan.

Neaman had no problem finding kids who needed this line of help. Finding the help was a bigger challenge.

"We don't have enough of the services," he said during an interview in April. "These kids get bounced all over the place."

Just about every month, a Medicaid-funded program known in social services circles as intensive therapeutic on-site services, or ITOS, topped Neaman's list of needs.

The long name describes a fairly basic concept: Bring a therapist into children's homes or schools to work through their problems in familiar surroundings.

Experts tout this home-based treatment as an effective way to improve behavior and relationships in a child's family.

During the late 1990s, the school system allowed staff from Marion-Citrus Mental Health Center to provide this on-site counseling at several schools. But the center pulled out of schools when funding and staffing proved too hard to maintain; Medicaid reimbursements don't cover a therapist's mileage to get to a site or the time it takes to write up a report.

However, Mary Lee Cubbison, the agency's Citrus County director, is aiming for her staff to have a presence in schools again. She met with guidance counselors in June to discuss the need for closer interaction and has a meeting scheduled today to follow up with the school system.

No concrete plans have been made, but Cubbison said she is confident her agency will eventually offer some on-site services. At the very least, she said, they'll collaborate to strengthen the referral system for getting children into outpatient counseling services.

This spring, just before he retired, Neaman heard some other encouraging news: A Tampa-based company, Foster America, would soon renew ITOS services in Citrus County under a contract with DCF.

Kellyanne Rush, comprehensive assessment program supervisor for the company's newest office in Ocala, said master's degree-level therapists will spend two-hour increments once or twice a week assessing what a family needs for a child with mental or behavioral problems to be successful. Working with the family and child, the therapist will create a treatment plan with goals and positive behaviors to work toward.

Many mental disorders take root at home, she said, but few services provide intervention for low- to medium-risk families who need some prodding to make healthy changes.

"Children don't come with manuals," said Rush, who formerly worked as a contract manager and protective service worker for DCF. "We develop an environment for the children and the families to function under. We try to find the stressors in the family dynamics, and then we work to eliminate those stressors so we can eliminate the problem.

"You can manipulate your environment to be more positive than negative," she said. "That's what we try to do."

Elsewhere, these services have helped lower the rates of re-arrest by serious juvenile criminal offenders and their likelihood of being removed from their homes or foster homes. The criminal justice system is a common place for kids to land when their mental disorders involve aggressive or impulsive behaviors.

The intensive treatment also has helped prevent a significant proportion of adolescents from being hospitalized, according to the National Institute of Mental Health.

That's particularly good news for District 13, where the number of psychiatric hospital beds set aside for children is inadequate, mental health advocates said.

The company has hired one full-time therapist so far to work solely in Citrus County. The case load will range between 10 and 20 youths at a time, and they'll stay in the program at least six months or until the family's goals are met.

"This is not a one-shot deal," Rush said. "We want to ensure the safety of the kids. We do know there is a need, (and) not just in Citrus. There's a scream for it all over the district."

Last year, 10 Citrus County youths ages 17 or younger were admitted to the crisis stabilization unit at LifeStream Behavioral Center, a community mental health agency based in Leesburg. Between January and April 2003, another five made the trek.

Those kids made up only 2 percent of the total admissions into District 13's inpatient beds for mental health emergencies. But that doesn't mean Citrus County didn't have more youths to send. When the six beds in the unit were full, kids often went to Gainesville or New Port Richey for an open bed.

Or, as happened during the first five months of this year, 16 kids from Marion and Citrus counties went home without ever getting one.

Some advocates in Citrus think the area could easily support its own crisis stabilization unit. They say this service would ease the burden on families dealing with harrowing mental health emergencies instead of forcing them to drive miles to the nearest facility licensed to handle children.

Others believe anything less than a dozen beds would be difficult to maintain financially. Or, they just don't think enough funding would ever come through for a modestly sized county.

Either way, some relief is ahead.

In November, the Harbor Behavioral Healthcare Institute is set to open a new crisis stabilization unit for children in Brooksville. The unit will add four to six inpatient beds to the district, both for indigent children and those with insurance, said executive directorIrene Rickus.

The new 26,000-square-foot building off State Road 50 also will provide a continuum of care, including case management for children and adults, ITOS, outpatient counseling for substance abuse and sexual abuse, and prevention and outreach services for families at risk for substance abuse.

Even better, Rickus recently hired a psychiatrist who specializes in children's mental health. That will increase the number of child psychiatrists based in District 13 to two - one in Hernando and one in Lake.

"It will be huge," she said. "It will be a lot of help to Hernando and the northern counties."

Children with pressing mental health needs in Citrus County still will have to drive out of the county for these specialized services, but the facility is closer than any others. Rickus said the community mental health agency's mission is to serve all five counties in the region, relieving LifeStream of some of that burden.

DCF officials recently told the executive directors of the district's three community mental health agencies to make a concerted effort to help their neighbors, particularly those without their own crisis stabilization units, Rickus said.

"A child from Citrus has to be able to access the beds without any difficulty," she said. "Not every county will have (a crisis stabilization unit). There has to be a neighboring county that acknowledges that need and takes it on. That is how it is throughout the state.

"Resources are so scarce and needs are so great, we really have to think outside the box," she added. "Literally outside the box, as in, outside county borders."

Looking beyond state borders might be the best approach to finding models of effective treatment strategies.

When asked if Florida had a locality that Citrus County might emulate, numerous mental health providers came up empty. DCF spokesman Tim Bottcher declined to respond to the question.

"We don't have any kind of rating system," Bottcher said. "The department does the very best job it can given the population that it serves and the resources that are available. We're not really in a position to say that any one particular county or district does better than others."

Experts, however, come up with a working model more quickly - in Vermont.

The northeastern state, similar to Citrus County demographically, has worked for the past 15 years to develop successful treatment approaches and laws that benefit children with mental health needs.

Whereas Florida got an F from the National Mental Health Association for not addressing children's disorders in insurance parity laws, Vermont received an A.

The state's broad definition of mental health parity helps ensure children have access to mental health services, the report said.

Central to the state's strategy is the Wraparound Approach, a planning process that Al Duchnowski of the Florida Mental Health Institute says is worth repeating.

The idea, conceived as an alternative to institutionalization, consists of intervening into the world of a child with a mental disorder with comprehensive community services and a support system.

The team-driven concept involves the family, child, relevant agencies and providers and a resource coordinator. They work to create a service plan that builds on the strengths of each family. Working toward a collective vision, the resource coordinators strive to wrap services around a child that will produce results.

When he did research in Vermont several years ago, Duchnowski found that even the very rural areas of the state had effective systems of care in place.

"They've done a good job of developing it," he said. "Parents are strong partners."

The idea has slowly gained acceptance across the country. Some local providers caught on to it a little more than a year ago when they created the CARE teams, which are based on the wraparound idea.

So far, 97 percent of parents with children referred to the teams have been satisfied with the process, said Judy Everett, project manager for the district's Severely Emotionally Disturbed Network and one of the teams' developers.

The program has helped divert children from more costly residential treatment and kept them in the community.

However, the model is expensive. Everett said it has been tough to come up with enough state money to pay for mental health counseling, medical needs and therapeutic recreation. She would like to see local service organizations and businesses play a role in funding these services.

"You might identify all these wraparound services, but finding the money can be difficult," she said. "We would love for the community to step up the plate and do more. Every little bit helps."

National and international statistics indicate that while the number of childhood psychiatric disorders is poised to rise proportionately by more than 50 percent by 2020, it is estimated that fewer than one in five of impaired children receive treatment.

The forecast doesn't bode well with members of the Citrus County Children's Health and Early Services Task Force. They worry that today's hyperactive, troubled children will become tomorrow's teenage parents and juvenile criminal offenders.

That's why children's mental health in Citrus County has become their newest initiative. With state prevention dollars drying up, "there's nothing to stop these kids from going where they're naturally going to go," said group leader and Health Department director Marybeth Nayfield.

"We're seeing more and more children who are 8, 9 and 10 exhibiting psychiatric problems, and that's the concern of this group," she said.

Before breaking for the summer, the task force decided a needs assessment must be done. Identifying what services are available and the major gaps is the first step toward filling them, Nayfield said.

Members might turn to the North Central Florida Health Planning Council for help. In December 2001, the regional council conducted a community health needs assessment for Hernando County. Nearly all the community leaders interviewed for the study felt the mental health services for children in the county were inadequate.

As a result, pediatric mental health services were identified as one of the county's 12 critical health issues deserving closer scrutiny.

Ultimately, Nayfield said, she doubts the county ever will get enough funding to provide a full array of mental health services for children. But that doesn't mean the county can't improve what it has, she said.

Part of the solution might be creating a more cohesive system for children and families to cut down on the time parents spend "going around in circles looking for services," she said. Also, task force members agree that parents need to be educated to differentiate between normal and abnormal behavior, so the kids who need help get it.

Kids such as Joey Roper, who is a testament to the normalcy proper treatment can provide. He began third grade at Crystal River Primary with C's and D's on his report card. But after beginning medication for ADHD this spring, he landed on the honor roll.

His parents are thrilled. Michele Roper no longer attends school with her son, no longer cleans out his desk to keep it organized.

But the words of 9-year-old Joey best capture the joys of a boy released from his mental health burden. "I knew that I had accomplished something that I wanted to do all year," he said. "I was just so happy."

- Colleen Jenkins can be reached at 860-7303 or cjenkins@sptimes.com

The National Institute of Mental Health identifies six main types of mental health problems that affect children and adolescents:

- Depressive disorders: These disorders include major depression and bipolar disorder. Symptoms of depression include persistent sadness, loss of energy, feelings of worthlessness, recurrent thoughts of death or suicide, difficulty sleeping and significant changes in weight or appetite. Bipolar disorder is often characterized by continuous cycles of depression and manic stages. The manic symptoms include overly silly moods, increased energy and talking, decreased need for sleep, excessive display of risky behavior and increased sexual thoughts.

- Anxiety disorders: The most common childhood mental illnesses. These include generalized anxiety disorder, characterized by exaggerated worry and tension over everyday events, and obsessive-compulsive disorder, where a child experiences repetitive behaviors or thoughts due to a feeling of urgent need.

- Attention deficit hyperactivity disorder: This common disorder includes symptoms of developmentally inappropriate levels of attention, concentration, activity, distractibility and impulsiveness.

- Eating disorders: This treatable mental illness involves extreme or unhealthy reductions of food intake (known as anorexia nervosa) or severe overeating (bulimia nervosa). Feelings of distress about body shape or weight also are common.

- Autism and other pervasive developmental disorders: A brain disorder that typically affects a child's ability to communicate, to form relationships and to respond appropriately to the outside world.

- Schizophrenia: Typically emerges in late adolescence or early adulthood but signs can be evident during childhood. Symptoms include hallucinations, false beliefs, disordered thinking and social withdrawal.