The National Academy for State Health Policy (NASHP) has released a new set of standards to help states provide high-quality care coordination for children and youth with special health care needs (CYSHCN). Care coordination is an important strategy to improve the quality of health care and reduce costs, and state officials are increasingly using it to integrate care for CYSHCN – yet they have reported challenges and a need for guidance. 

The National Care Coordination Standards for Children and Youth with Special Health Care Needs are designed to help state health officials to:

• Address state-level challenges, including identifying the needs of CYSHCN;
• Support and engage families of CYSHCN in care coordination;
• Train the care coordination workforce; and 
• Improve other aspects of quality care coordination systems. 

States can also use these standards in a variety of ways, including to identify areas for quality measurement, guide strategic planning, and improve their care coordination systems for CYSHCN.

Historically, care coordination researchers and policymakers have primarily focused on adult populations. However, CYSHCN have unique and diverse care coordination needs and warrant special consideration. While some families of CYSHCN lack critical care coordination services, others report challenges due to poor alignment of care coordination by multiple service providers. 

NASHP developed the National Care Coordination Standards for Children and Youth with Special Health Care Needs over a two-year period with support from the Lucile Packard Foundation for Children’s Health. To inform these standards, NASHP conducted an extensive literature review, conducted more than a dozen key informant interviews, and obtained guidance from a national workgroup comprised of over 30 members representing state and federal agencies (e.g., Medicaid, public health, and mental health), families of CYSHCN, health plans and insurers, and health care providers with expertise in CYSHCN. These standards expand upon the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, which were developed in 2012 and identified care coordination as a core element of a comprehensive, coordinated system of care for CYSHCN. 

In addition to describing more than 50 system-level care coordination standards, this resource provides a clear definition of care coordination, identifies major themes across the standards, and outlines the principles guiding their development. The standards are grouped into six domains identified as key for effective care coordination, including:

• Screening, identification and assessment;
• Shared plans of care;
• Team-based communication;
• Child and family empowerment and skills development;
• Care coordination workforce; and
• Care transitions. 

For more information about the National Care Coordination Standards for CYSHCN, please contact Karen VanLandeghem, NASHP senior program director, kvanlandeghem@nashp.org or Kate Honsberger, NASHP project director, khonsberger@nashp.org.

Read the full report here.