The perspective and expertise of parents and caregivers are invaluable in efforts to improve the health care system for children with special health care needs. But how can service and policymaking organizations involve family members in Family Advisory Committees and maintain their interest and participation? A veteran parent offers her thoughts and tips.
Proposed changes in health care payment, from fee-for-service to alternative, risk-sharing payment models, can have a substantial impact on health services for children, especially those with complex care needs. In addition, tying payment to value can increase use of ambulatory and preventive services and encourage creative outreach. However, abrupt changes can interrupt continuity and reduce access to care.
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, 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 these children.
What ethical considerations should guide the design and evaluation of systems of care for children with medical complexity? There are inevitable tradeoffs that any complex health care system must confront when attempting to achieve multiple worthy goals, from benefitting individual patients and families and securing fair distribution of benefits across populations, to operating in a manner that is transparent and free from conflicts of interest.