Access to Services for Children and Youth With Special Health Care Needs and Their Families: Concepts and Considerations for an Integrated Systems Redesign.

Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families. Meeting these needs should be grounded in health equity, address systemic racism and ableism, and emphasize the life course and journey of those with such needs and their families. In this paper, we start with the simple concept of asking that care is available for CYSHCN regardless of when, where, and how they need it. Access to services is built on relationships instead of a series of transactions. Opportunities for innovation include creating a single point of service entry; determining services based on need instead of diagnosis; and emphasizing service continuity, transition, and a place-based approach. The innovations reimagine access throughout the life course, centering care around a proactive, human-centered system that addresses health and all of its determinants. The landscape of antipoverty investments, cultural humility, workforce changes, technology, and human-centered thought in design have the potential to further transform the conceptual framework to improve access to services for CYSHCN and their families.

Variations in state-level definitions: children with special health care needs.

UNLABELLED: Multiple agencies at the federal and state level provide for children with special health care needs (CSHCN), with variation in eligibility criteria. Epidemiological studies show that 3.8%-32% of children could be classified as children with special health care needs, depending on the definition and method of determination used. OBJECTIVES: To determine the extent of variation between definitions used and funding by Supplemental Security Income (SSI), Title V, and Medicaid for CSHCN. METHODS: Statistics on children receiving SSI and the amount of funding were obtained from the SSI website. This was compared to information on Title V children from the Maternal and Child Health Bureau (MCHB) website and eligibility definitions published by the Institute of Child Health Policy in Gainesville, Florida. Medicaid definitions were obtained through interviews with state Medicaid agencies and confirmed with state regulations. RESULTS: The population enrolled in SSI has varied with alterations in eligibility criteria. The number of children enrolled in SSI and the amount of funding per child in each state correlate with the state poverty rate (r=0.56, p<0.0001; r=0.44, p<0.001). Enrollment in Title V does not correlate with state poverty rates (r=0.16, p=0.25). Title V definitions vary widely among states, but there was no correlation between the number of children served or amount of funding per child and the type of definition used (Z=-0.12, p=0.91; Z=-0.59, p=0.55). State Medicaid agencies rarely define CSHCN. CONCLUSIONS: There is significant variation in definitions used by agencies serving CSHCN. Agencies need to be more explicit with eligibility criteria so the definitions are logical to those making referrals for services.