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Identifying, accessing and coordinating services that benefit an individual child or youth with special health care needs is a difficult but necessary part of good quality health care. Providing such care requires a continuous collaborative effort by children/youth, families, and their care team. The best means of guiding and documenting these efforts is an individualized and comprehensive plan of care.

A plan of care includes the information necessary to assure that issues affecting a child’s health and health care are identified, and that activities and accountability for addressing them are documented. The best strategies, care structures, processes and outcomes result when patients, families and health care providers form trusting, caring partnerships and draw upon one another’s perspectives and expertise.

This report, and its accompanying implementation guide, recommend core content of a comprehensive and integrated plan, and outline the steps necessary to achieve it.

Related Webinar: Two expert speakers discuss their approaches to the process of care planning in two very different settings—Children’s Hospital of Philadelphia and a small private practice in Vermont.

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.