Division of Services for Children with Special Health Needs (DSCSHN)

How we improve the health and quality of life for CYSCHN

We help children and families, health care professionals, and public health leaders improve the system of services and supports by:

Ensuring health from the start

What we do: Through our newborn screening programs, we reach the nearly 4 million infants born each year.

Purpose: All newborns benefit from state programs we support. They screen for hearing, critical congenital heart defects (CCHD), and dozens of conditions identified through blood spots.

Supporting families

Connections: Our Family-to-Family Health Information Centers support families of children with special health care needs.

Coverage: These centers serve families in 59 states and territories, and through organizations who serve Indian tribes.

Addressing sickle cell disease

Impact: We serve nearly 1 in 4 people with sickle cell disease through our sickle cell disease programs.

Coverage: We provide grants that create regional networks of care, education, and social services across the United States.

Guiding national health policies

Leadership: We coordinate the Advisory Committee on Heritable Disorders in Newborns and Children.

Purpose: The committee advises the Secretary of the Department of Health and Human Services (HHS). It covers universal newborn screening tests, technologies, policies, guidelines, and standards.

Programs we manage

We have two branches within our division: the Integrated Services Branch (ISB) and the Genetics Services Branch (GSB).

Integrated Services Branch

ISB oversees programs that work to promote coordinated, comprehensive, family-centered systems of services.

• Transition for Youth with Autism and/or Epilepsy
• CYSHCN Research Network
• Early Hearing Detection and Intervention
  • State and Territorial Grants Implementation and Change Center located at the National Beacon Center of Gallaudet University website
  • Family Leadership in Language and Learning Center, led by Hands & Voices
  • Provider Education Center
• Family Engagement and Leadership in Systems of Care
• Family-to-Family Health Information Centers (F2Fs)
• Health Care Delivery Systems Innovations for Children with Medical Complexity
• National Center for a System of Services for CYSHCN

Genetic Services Branch

GSB oversees programs that focus on using genetic and genomic information in clinical practice and supporting coordinated public health systems of services.

• Comprehensive Medical Care for Thalassemia
• Genetics
  • Advances in Integrating Genetics into Clinical Care
  • Regional Genetics Networks (RGNs)
  • National Genetics Education and Family Support Center
• Maternal and Child Environmental Health Network
• National Hemophilia Program
  • National Hemophilia Program Coordinating Center
  • Regional Hemophilia Network
• Newborn Screening
  • Newborn Screening Information Center
  • National Center for Newborn Screening System Excellence (NBS Excel)
  • Cooperative Newborn Screening System Priorities (NBS Co-Propel) Program
• Sickle Cell Disease
  • Sickle Cell Disease Newborn Screening Follow-up Program
  • Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
  • Hemoglobinopathies National Coordinating Center