Zeena Johar, Ph.D., is the Co-founder and Chief Growth Officer at Imagine Pediatrics. Katie Beckett’s story in 1980 highlighted the need for Medicaid coverage for children with special healthcare needs to receive essential nursing care at home. This led to the Tax Equity and Fiscal Responsibility Act of 1982, allowing families to access these services. Despite progress, the current healthcare system for children with special needs remains fragmented, leading to poor health outcomes and caregiver burnout.
Discharge planning teams at children’s hospitals help families transition home, but factors like lack of caregiver readiness and nursing shortages can create challenges. Caregivers need training to manage complex medical needs like enteral feeding tubes and respiratory treatments. Payment reform, virtual care networks, and improved pediatric home health support are needed to create seamless care pathways and improve outcomes for these children.
Innovative programs like the Licensed Health Aide in Arizona and virtual-first pediatric care models are emerging to support families of children with special healthcare needs. These programs provide training, support, and compensation for caregivers, helping them take on the role of licensed health aides. Aligning incentives across stakeholders, including children with special healthcare needs, caregivers, healthcare providers, and payors like Medicaid, is essential to improve care quality and outcomes.
By empowering caregivers and leveraging innovative care models, along with transitioning to value-based care risk models, we can better serve children with special healthcare needs. By maximizing safe and healthy days spent at home within their communities, a thoughtfully curated pediatric care model can improve the overall experience for these children and their families. Forbes Business Council supports business owners and leaders in their growth and networking efforts.
