The Problem:
In 2022, the South Carolina Council identified a growing shortage of caregivers for children with significant medical needs. Many parents had to leave their jobs to care for their children because qualified caregivers were unavailable. Parents serving on the Council and participating in Partners in Policymaking raised this issue and pushed for change. The Council also used findings from the 2023 HCP Benchmark Report to document the need and begin policy discussions.
Action:
A Partners in Policymaking graduate helped initiate meetings with state Medicaid policy leadership to discuss changes to the Medically Complex Children’s (MCC) Waiver. The Council organized a small group of parents whose children receive waiver services to share their experiences directly with policymakers. This parent group and Council leadership met with Medicaid officials and worked together over two years to advocate for allowing parents to be paid caregivers for their children.
Results:
As of July 1, 2025, the Medically Complex Children’s Waiver was updated to allow parents to serve as paid caregivers. To date, 1,290 MCC waiver participants have requested children’s attendant care services. Of those, 97 parents have been approved or are in the final steps of approval to become paid caregivers. The parent group continues to meet to help resolve implementation issues and ensure families can access the new option.
Unique Role of the Council:
The Council was well positioned to lead this effort because of its oversight of Partners in Policymaking and its strong relationships with Medicaid leadership and other system partners. These connections allowed families’ voices to directly shape policy change.