New NASHP Tool Identifies Key Quality Measures for Children with Special Health Care Needs

Quality measurement is a critical component of state health programs, including Medicaid and State Title V CYSHCN programs that serve children and youth with special health care needs (CYSHCN). While quality measurement for children continues to lag behind that of adults, quality measurement efforts for children overall, and CYSHCN in particular, are gaining greater traction across the nation.

A new National Academy for State Health Policy compendium of data and quality measures provides a robust reference tool for states working to measure and improve their systems of care for CYSHCN.

The compendium compiles existing quality measures from 13 relevant measure sets and highlights the measures that address each core element in a system of care for CYSHCN. It includes some measure sets that are already widely used, such as the National Survey of Children’s Health, as well as some that are very applicable to systems of care for CYSHCN, but may not be commonly used by states. It also includes measures from the Centers for Medicare & Medicaid Services (CMS) Child Core Set. In 2024, state Medicaid agencies will be required to begin reporting all Child Core Set measures to CMS. This compendium summarizes these numerous, relevant measure sets in one place so states can easily select the measures that best meet their needs.

The measures compendium aligns with the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, which describe the essential structure and process components of a comprehensive and quality system of care for CYSHCN. State officials can use the compendium to inform key decisions about which measures can help them evaluate how their states’ systems of care serve CYSHCN.

Improving quality of care for CYSHCN, including children with medical complexity, is a key priority for many state health policymakers. Nearly 20 percent of all US children (more than 14 million children) have a special health care need. Approximately 3 million of those children have complex medical conditions. Of children with medical complexity, two-thirds are enrolled in Medicaid, and they account for 34 percent of all Medicaid spending on children.

States face a number of challenges in measuring quality of care for CYSHCN, as outlined in the NASHP issue brief State Strategies for Medicaid Quality Improvement for Children and Youth with Special Health Care Needs. These challenges are compounded by the unique and varied needs of this population of children. For example, CYSHCN have extremely varied diagnoses. While there are numerous measures targeting specific medical conditions — for example, asthma medication management — many CYSHCN have less common disorders that are much lower in prevalence than what is needed for accurate and reliable quality measurement. Further, many measures do not capture major aspects of quality care defined by families, such as experience with accessing and receiving care.

States have launched numerous initiatives to reform how they deliver and pay for care through Medicaid, which include initiatives that reward providers for delivering high-quality and cost-effective care, as well as programs that contract with managed care organizations to manage beneficiaries’ care. States are using quality measurement as a central component of these reforms. This tool can help states understand the wide range of measures available as they work to refine their quality measurement strategies for CYSHCN.