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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.

Related Grants

This policy brief by the National Alliance to Advance Adolescent Health looks at what happens when low-income youth and young adults with chronic conditions and disabilities age out of the Title V Program for Children and Youth with Special Health Care Needs and provides policy recommendations.

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.