How do organizations and agencies serving children with special health care needs recruit family members to serve on an advisory committee? How do they encourage commitment to their role? How do they maintain engagement with them? This fact sheet provides recommendations for meaningfully engaging a group of family advisors.
Taking a fresh look at the perennial issue of how to provide effective care coordination, a team of researchers has reimagined the process using human-centered design, an approach that focuses on the users’ needs. The goal is to integrate all sectors of care and support – medical, educational, financial and other services – so that care can be delivered effectively and better meet the needs of children, families, providers, and payers.
The evidence is clear that care in a pediatric medical home results in improved health outcomes, increased family satisfaction, and decreased cost of care. A statewide survey queried California parents on which components of a medical home they most value, and how satisfied they are with the care their child receives.
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.