Children and Youth with Special Health Care Needs (CYSHCN)

CYSHCN are children who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions. They also require health and related services of a type or amount beyond that required by children generally.ⁱ

According to our National Survey of Children’s Health (NSCH) (PDF), in our country:

• About 14 million children under 18 years old (19%) have a special healthcare need
• 25% of homes had one or more children with a special healthcare need
• CYSHCN are more likely to live in poverty, be non-Hispanic Black, and have public insurance than non-CYSHCN

Our Approach to CYSHCN

Our bureau’s strategic plan elevates access, equity, capacity, and impact for our Maternal and Child Health (MCH) populations. We support CYSHCN and their families during each stage of life, from infancy through adulthood. With our committed partners, our programs promote these six indicators of a coordinated, comprehensive, family-centered systems of services where:

• Children and youth are screened early and continuously
• CYSHCN receive a medical home model of care that is patient-centered, coordinated, comprehensive, and ongoing
• Community-based services are organized so families can use them easily
• CYSHCN receive services necessary to make transitions to adult life, including healthcare
• Families have adequate insurance and funding to pay for services they need
• Families of CYSHCN are partners in decision-making at all levels of care, from direct care to the organizations that serve them.

In addition, our programs support strengthening the Maternal and Child Health (MCH) workforce including:

• Training and support for Title V MCH professionals, students, health professionals, paraprofessionals, family leaders, and advocates.

Our Investments

We strengthen the capacity of state public health agencies, healthcare providers, and organizations that serve CYSHCN.

Investments to improve systems of services

• Advancing Systems of Services for Children and Youth with Special Health Care Needs (CYSHCN)
• CYSHCN Research Network
• Family to Family Health Information Centers (F2F)
• Health Care Delivery Systems Innovation for Children with Medical Complexity
• Innovation in Care Integration for Children and Youth with Autism Spectrum Disorders (ASD) and Other Developmental Disabilities Programs
• Maternal and Child Environmental Health Network
• Strategic approaches to improving access to quality health care for children and youth with epilepsy
  • Innovations in Access to Care for Children and Youth with Epilepsy
  • Transforming Health Care for Children and Youth with Epilepsy
• Title V Maternal and Child Health Block Grant
• Maternal, Infant, and Early Childhood Home Visiting Program

Investments to improve genetic and newborn screening services

• Newborn Screening and Genetics Programs
• Early Hearing Detection and Intervention programs

Investments for specific conditions

• Autism Spectrum Disorder (ASD) and related Developmental Disabilities (DD)
• Epilepsy
• National Hemophilia Program
• Pediatric Pulmonary Centers
• Sickle Cell Programs
• Thalassemia

Investments in Technical Assistance (TA) Resource Centers

• Advances in Integrating Genetics into Clinical Care Program
• Early Hearing Detection and Intervention National Technical Resource Center
• Family Leadership in Language and Learning Center
• Innovations in Care for Children and Youth with Epilepsy
• Leadership in Family Professional Partnerships
• Medical Home Implementation for CYSHCN
• National Center for Health Care Transition for Youth with Special Health Care Needs
• National Center for Children’s Vision and Eye Health
• National Center for Health Insurance and Financing for CYSHCN
• National Genetics Education and Family Support Program
• National Hemophilia Program Coordinating Center
• Newborn Screening Family Education Program
• Newborn Screening Technical Assistance Center - NewSTEPS

Gathering Data and Tracking Progress

We gather program data and national data to track progress. We evaluate the impact of our investments. We gather data through:

• Title V MCH Block Grant state annual reporting activities. These reflect population health, including measures about children’s health status (e.g., receiving care in a medical home, having adequate insurance, etc.). 
  • National Outcome Measures (see numbers 17.1, 17.2, 17.3, and 17.4)
  • National Performance Measures (see numbers 11, 12, and 15)
• Discretionary Grants Information System (DGIS)

_{McPherson et al (1998) Pediatrics 102/1.}