4.  Amended Legislation for Title V of the Social Security Act (1989): “Facilitate the development of community-based systems of services” Healthy People 2010 Objective 16-23 “Increase the proportion of States and territories that have service systems for children with special health care needs.” The President’s New Freedom Initiative (2001) Responsibility given to HRSA for developing and implementing a community-based service system

5. National Survey of Children with Special Health Care Needs: Family Partnership and Satisfaction Status: 57% Access to Medical HomeStatus: 47% Adequate Financing/ InsuranceStatus: 62% Early and Continuous ScreeningStatus: 63% Easy Access to Community Based Services Status: 89% Services to Transition to AdulthoodStatus: 41% ALL COMPONENTSStatus: 20%

6. “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” 13.9% of children and youth under age 18

8. Revisions of NS-CSHCN to improve measurement of outcomes for family partnership, organization of services for easy use, and developmental screening. Launch new initiative on universal vision screening for young children via National Coordinating Center for Vision Screening for Young Children. Work with public and private constituents to protect focus on pediatrics and family-centered care in the “new world” of medical home.

10. Supports the core systems program through State Implementation Grants in over half of States, Supports National Resource Centers to facilitate core systems outcomes (Family Voices, NCCC, AAP, Catalyst Center, HRTW, Champions), Supports systems development activities for specific conditions including Newborn Hearing Screening, Autism, Epilepsy, and Traumatic Brain Injury.

11. Promote family-centered care, cultural competence, and family professional partnerships through Family-to-Family Health Information and Education Centers in every state and DC, Support Continuous Quality Improvement (CQI) in all sponsored programs (Continuation of Learning Collaborative Model with National Initiative for Children’s Healthcare Quality)

12. Expand the capacity of the private and public health system to strengthen the financing system and provide adequate health insurance and financing for all CYSHCN, Improve access to early and continuous screening and surveillance through enhanced data integration capacity, improved guidelines, and increased awareness.

14. Facilitate health care and public health infrastructure to enhance and expand newborn screening programs and to improve linkages among state and community systems of care for CSHCN Support the National Hemophilia,Thalassemia Comprehensive Care, and the Sickle Cell Disease Newborn Screening Programs as models of comprehensive care for the delivery of genetic services: testing, counseling, education and coordinated system of services.

15. Examine emerging issues and technologies in genetics with a special emphasis on the financial, ethical, legal and social implications of these issues/technologies for MCH populations, Improve the genetic literacy of the MCH population by enhancing understanding of the benefits, risks, limitations, and implications of genetic testing and the role of genetic information in improving health practices.

16. Newborn Screening Saves Lives Act of 2008: Establish Grant Program to provide education, outreach, and coordinated follow-up care, Expands responsibilities of the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children to advise the Secretary on science and technology for expanding or enhancing screening for heritable disorders in children.

17. Newborn Screening Saves Lives Act of 2008: Facilitate creation of Federal Guidelines on newborn screening Assist States in meeting Federal guidelines. Clearinghouse for newborn screening educational materials, Establish an Interagency Coordinating Committee on Newborn and Child Screening.

19. Contact: Bonnie Strickland, Ph.D. Director, DSCSHN HRSA/MCHB bstrickland@hrsa.gov 301-443-9331