Policies to provide better care for medically complex children made recent headlines in Arizona as its Family Licensed Health Aide Program went into effect this month. The program allows family caregivers to be paid for tending to their child’s medical tasks.
In Florida, state health policy often falls short of fully supporting medically complex children, according to University of Miami Miller School of Medicine Professor Jeffery P. Brosco, M.D., Ph.D.
“Policies are aimed at the typical child who doesn’t need much medical intervention,” he said. “They mostly need vaccines and a place to go if they get sick and to help get better quicker, but for the children with really complex medical needs? Those are the ones for whom our policy is not really well-designed.”
The disparities are even more palpable when considering the financial impacts of providing care for these children. According to Brosco, about 1%-2% of children in Florida are considered medically complex, yet account for 30%-40% of both child mortality and health costs.
Children with developmental or behavioral disorders such as ADHD, anxiety, and depression are also experiencing a lack of access to care, due in part to a widespread behavioral health workforce shortage and social determinants of health.
“Of 400,000 [Florida children with behavioral health disorders], only about 200,000 are getting treatment of any kind. So there’s a couple hundred thousand children not getting any intervention. Those tend to be populations where families are disadvantaged for a variety of reasons. Sometimes it’s because of racism. Sometimes it’s because of economic issues. Sometimes it’s because they live in a rural place and just don’t have great access.”
One unique advantage Florida does have is the Children’s Medical Services Health Plan, which provides managed care coverage for participants with complex medical needs. Still, the plan currently has about 90,000-100,000 enrollees—a fraction of the 800,000 medically complex children in the state.
Reevaluating the quality metrics that incentivize managed care can help address this issue, Brosco said. CMS currently uses the Healthcare Effectiveness Data and Information Set (HEDIS), which includes measures such as child immunization dates and care visit benchmarks. However if a child has leukemia, as Brosco said, other medical processes take higher priority than regular immunizations, and measuring quality of care becomes trickier.
“Among those children with medical complexity, there’s 13,000 different conditions,” he said. “You can’t have 13,000 different quality metrics. It just is not feasible.”
An alternative to the individual metrics could be placing more emphasis on measuring quality of life. This includes measuring if a child is free of pain and able to participate in everyday activities. Quality of life measures can also be applied to the child’s caregivers, such as the amount of anxiety they experience with regards to their child’s care.
Quality metrics could also apply to the continuum of care the patient receives. Even if a family does receive a diagnosis, one of the largest barriers to care is not being able to connect with the right providers.
In 2020, the National Academy of State Health Policy developed standards of care coordination for children with special health needs.
A greater emphasis on child population health measures can also help establish a more upstream approach to addressing child health needs, Brosco said. One set of metrics through the Florida Department of Education focuses on kindergarten readiness in the state. But Brosco said there can be even more measures prior to a child entering the school system, such as if a family reads to their child or if they have access to a playground. He pointed to Ohio’s Medicaid program, which is actively working with hospitals and community partners to improve housing, provide job training, and other social determinants of health.
By investing earlier in a child’s health, Brosco said, the state can both improve their quality of life and save on health care costs.
“We do it out of the goodness of our heart because it’s right for children and families, but it also in the long run will save money and improve health. There are good reasons for us to start thinking about how our state health policy can aid what really matters to us, which is that our population is healthy and thriving.”