Zeena Johar, Ph.D., is leading the charge in revolutionizing the care for children with special healthcare needs through her role as the Cofounder and Chief Growth Officer at Imagine Pediatrics. She highlights the story of Katie Beckett, whose struggles in accessing essential nursing care at home led to the landmark ruling of the Tax Equity and Fiscal Responsibility Act (TEFRA) in 1982, allowing families with children with special healthcare needs to access critical services through Medicaid.
Despite advancements in caring for these children at home, the overall experience remains fragmented, resulting in poor health outcomes and caregiver burnout. One major challenge is the lack of seamless care pathways for transitioning from tertiary care children’s hospitals to home environments. Discharge planning teams often face obstacles such as caregiver readiness issues, nursing shortages, and inadequate support services, leading to delays in assigning skilled nurses for home care.
Addressing the fragmented healthcare system requires a combination of solutions, including payment reform to create value-based care models, virtual pediatric care networks, and improved pediatric home-health support and training opportunities. Some states have introduced innovative programs, such as the Licensed Health Aide in Arizona, which allows caregivers to become licensed health aides for their children with complex medical needs and receive compensation. Virtual-first pediatric care models also provide 24/7 support for families of children with special healthcare needs.
Another crucial aspect of transforming care for children with special healthcare needs is aligning the incentives of all stakeholders involved, including the children, caregivers, healthcare providers, and payors like Medicaid. Value-based care models that shift incentives from the volume of care to the quality of care can help improve outcomes and align interests across different parties. By empowering caregivers and leveraging innovative care models, healthcare providers can maximize the number of safe and healthy days that children with special healthcare needs spend in their communities and homes.
The ongoing efforts to enhance care for children with special healthcare needs require a collaborative approach that combines caregiver empowerment, innovative care models, and value-based care risk models. By championing these initiatives, healthcare providers can create a more cohesive and supportive environment for these children and their families. Through a thoughtful and holistic pediatric care model, the goal is to ensure that children with special healthcare needs can thrive within their communities and homes, ultimately leading to better health outcomes and quality of life.
