Quality measurement is a critical component of state health programs, including Medicaid and State Title V CYSHCN programs. This new compendium highlights quality measures aligned with key elements for a system of care for children and youth with special health care needs, as outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool compiles data and quality measures from applicable and widely used measure sets. Identification of data and quality measures can help states evaluate how well their system of care is serving CYSHCN.
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.
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.
Whether it’s facing the shock of a first diagnosis or responding to the many challenges along the way, parents of children with special health care needs often find that their most highly valued source of support is an experienced and knowledgeable parent who has navigated the same path. But where to find such a parent? Family-to-Family Health Information Centers may provide the answer.
The critical handoff from pediatric to adult care providers often fails to occur, in part because no payment mechanisms are available to either practice. To address this, the National Alliance to Advance Adolescent Health convened a multidisciplinary group of stakeholders to develop recommendations for pediatric-to-adult transition value-based payment (VBP) strategies and quality measures. Their findings are outlined in this new report.
Sufficient access to services for children with medical complexity varies considerably by state, geographic region, and payer. Families, advocates, and health care professionals need to understand children’s rights. Policymakers and payers must help support reliable and appropriate coverage and benefits. Learn how medical-legal partnerships and other forms of advocacy can protect the rights of children and support families in an era of cost containment.
Children with medical complexity account for about 40 percent of pediatric Medicaid spending, yet comprise only 3 percent of the pediatric population. Currently, no population measures exist to describe these children, who have diverse conditions of variable severity. A study published in Pediatrics suggests 10 potential outcome domains as a starting point.
Team-based health care is a key component of the Chronic Care Model, which has shown to be successful for adults with chronic conditions. As the number of children with chronic conditions grows, and payers seek innovative ways to increase efficiency and effectiveness, it may be time to invest in restructuring pediatric practice to promote team-based care.
While self-management support has been a component of adult chronic care for decades, it is just emerging as a critical need for children, especially those with complex conditions. Self-management is a shared undertaking between the child, their parents and care providers, and must take into account the child’s developmental status and the family’s capacities. Clinicians need routine, standardized approaches and tools to address the unique needs of children and their families including assessing self-management skills, collaboratively setting goals, and promoting competence and autonomy in youth.
Child health professionals increasingly are being asked to include screening for adverse early experiences as part of routine preventive pediatric care. Screening and providing appropriate follow-up would be a huge challenge for most practices. A good first step might be to incorporate routine screening for maternal depression, one of the most common risk factors for family psychosocial problems.
