Children with Special Health Care Needs

Children and youth with special health care needs (CSHCN) “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.”1

  • Nearly 20% of U.S. children under age 18 years of age have a special health care need.
  • One in five U.S. families have a child with a special health care need.
  • Children and youth with special health care needs and their families often need services from multiple systems – health care, public health, education, mental health, and social services.

CSHCN Programs Addressing Deaf Awareness, Newborn Screening Awareness and Sickle Cell Disease Awareness

Our Early Hearing Detection and Intervention (EHDI) Program enables states, territories, families, and providers to develop complete and coordinated systems of care so newborns, infants and young children who are deaf or hard of hearing are identified and get the care they need.

Newborn screening is a successful public health program that has saved and improved the lives of thousands of babies in the United States. Each year, four million newborns are screened for up to 34 conditions recommended by the U.S. Secretary of Health and Human Services. Early intervention and treatment mitigates brain and organ damage, may affect disease severity, and may prevent life-threatening complications.

  • Our The Newborn Screening Clearinghouse program establishes and maintains a central, online clearinghouse of current educational newborn screening information on family support and follow-up services, and other resources, as well as research to increase awareness, knowledge, and understanding of newborn screening for parents, expectant individuals, families, and health professionals.
  • Our Newborn Screening Data Repository and Technical Assistance Program provides technical assistance to state newborn screening programs and collects and stores data on the newborn screening system to help states improve their screening processes.
  • Our Newborn Screening Family Education Program supports the education of families about the newborn screening program and is focused on reaching the underserved and rural populations.
  • Our Quality Improvement in Newborn Screening Program aims to support quality improvement (QI) in newborn screening processes to ensure the optimal health and well-being of children with conditions identified through state newborn screening programs. The program supports the development and implementation of QI activities across the nation, focusing on timeliness, detecting out-of-range results, reporting out-of-range results to providers, confirming diagnoses, and addressing emerging issues that could negatively affect the quality, accuracy, or timeliness of newborn screening.

Our Sickle Cell Disease Treatment Demonstration Regional Collaborative Program funds regions that work to improve the care and treatment of people with sickle cell disease by coordinating service delivery, genetic counseling and testing, bundling of technical services, health professional training , and efforts to expand and coordinate education, treatment, and continuity of care for patients.

Our Sickle Cell Newborn Screening Follow-up Program enhances the follow-up services of state sickle cell disease newborn screening programs and supports community-based efforts. Activities focus on improving access for newborns diagnosed with, or as carriers of, sickle cell disease, and their families.

What Goals Are We Trying to Accomplish?

The Maternal and Child Health Bureau's (MCHB) vision is for optimal health and quality of life for all children and youth with special health needs and their families. Creating an effective system of care for children and youth with special health care needs to achieve optimal outcomes is one of the most challenging and pressing roles for public health leaders at the national, state and local level. Systems of care for CSHCN depends on ensuring families are partners in care; there is early and continuous screening; children and youth have access to a medical home to provide coordinated care that is community- based; there is adequate insurance and funding to cover services; and families and providers plan for transition to adult care and services.

Individuals and Families diagram

Improving the system of care for CSHCN has potential for maximizing outcomes for women, pregnant women and children in general – what works for the most vulnerable should work for all.

How Do We Accomplish Our Goals?

MCHB accomplishes these goals by providing leadership and resources to the nation in order to improve the quality of life for children with special health needs and their families. MCHB provides support for programs that support states, communities, and organizations to improve systems of care for all CYSHN or, in some cases, for children with specific conditions as required by federal law. MCHB works on the principles that all program are: 1) evidence-base/informed; 2) ensure health equity; 3) are whole-person focused; and 4) are innovative and collaborative.

Learn about our initiatives, on our CSHCN Programs & Initiatives page


1McPherson et al (1998) Pediatrics 102/1.

 

Date Last Reviewed:  September 2018