Guidelines for Engaging Parents of Children with Special Health Care Needs

Introduction: The Children’s Medical Services Network, Florida’s Title V program, provides

enrollment for 65,000+ children with special health care needs statewide. The CMS South

region enrolls 8,269 children with approximately 40 nurses providing care coordination.

Limited resources are compounded by the fact that these children have multiple needs and

families often struggle to navigate the health system. It is especially important to develop a

strategic plan for engaging and empowering families in the care coordination of their children.

Methods: This concept evolved from an organized and thorough literature review and a series

of meetings with the CMS’ Regional Medical Director and teams. The results of the literature

review were shared at CMS Future of Care Coordination meetings.

Results: Used a three-part framework for building partnerships with parents published by the

National Academy for State Health Policy to develop a strategic plan for improving CMS parent

engagement. Level 1 in the NASHP model requires parents effectively engaging with their

children; Level 2, parents shaping services; and Level 3, the pinnacle, is parents shaping policies

and systems.

Discussion: Increasing parent engagement has a great potential for improving health outcomes

for children with special needs. When examining this from a large organizational perspective,

this strategy for improving parent engagement will be a low cost, high yield opportunity that

will increase organization efficiency. Additionally, it also has the potential for improving the

health and well-being of families within the region.