Meg Comeau, a parent of a young adult with special needs as well as a long-time professional in the CSHCN field, suggests that commonly used terms such as “family burden” and “medical complexity” are viewed differently by parents and professionals, with consequent impact on how services are provided. She proposes reconciling those views, with the goal of creating a better system of care.
This fact sheet from the National Health Law Program is designed to inform families about the steps they can take to appeal decisions about their child’s CCS benefits and highlight key resources available to support the process.
The National Academy for State Health Policy convened a national forum to discuss innovations, strategies, and opportunities to improve high-quality, equitable care coordination for children and youth with special health care needs, with particular focus on integrated care and the care coordination workforce.
