1. Maternal and Child Health Bureau www.mchb.hrsa.gov Partnering to Achieve Community Service Systems for CSHCN Merle McPherson, MD, MPH New Leaders Orientation Meeting October 2004

2. Maternal and Child Health Bureau www.mchb.hrsa.gov History (1) 20-year history of: Development Demonstration Partial implementation in every state Moving to a comprehensive, strength-based, family-centered approach Key partnerships with Health professionals Families States and communities

3. Maternal and Child Health Bureau www.mchb.hrsa.gov History (2) Surgeon General’s Conferences 1982 1988 Title V’s revised legislative mandate (OBRA ‘89) Provide and promote family-centered, community-based coordinated care Facilitate the development of community-based systems of services Healthy People 2000 and 2010 Broad definition of CSHCN Published in Pediatrics (1998)

4. Maternal and Child Health Bureau www.mchb.hrsa.gov Core Outcomes (1-3) Families of CSHCN will participate in decision making at all levels and will be satisfied with the services they receive. CSHCN will receive regular ongoing comprehensive care within a medical home. Families of CSHCN will have adequate public and/or private insurance to pay for the services they need.

5. Maternal and Child Health Bureau www.mchb.hrsa.gov Core Outcomes (4-6) Children will be screened early and continuously for special health care needs. Community-based service systems will be organized so families can use them easily. Youth with special health care needs (YSHCN) will receive the services necessary to make transitions to all aspects of adult life.

6. Maternal and Child Health Bureau www.mchb.hrsa.gov Current Status (1) Partial implementation in all States State and national data released from first National CSHCN survey Next survey being planned Performance measures for States on 6 core outcomes in place

7. Maternal and Child Health Bureau www.mchb.hrsa.gov Current Status (2) Incorporated as part of the President’s New Freedom Initiative (NFI) “Delivering on the Promise” (March 2002 status report on NFI) charges HRSA with developing and implementing plan to achieve appropriate community-based systems for children and youth with special health care needs and their families.

8. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program OVERALL STRATEGIES: 2004-2005 (1) SIX OVERALL IMPLEMENTATION STRATEGIES: Fund implementation grants, Work with DSCH and Block Grant, Identify/address special issues, Coordinate with partners, Develop/Disseminate information, Monitor/Measure progress Integrate new programs (Epilepsy, TBI)

9. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program (2) Family Professional Partnership -Desired National Status by 2005 Family-professional partnerships and cultural competence are key elements in 100% of SPRANS grants. 50% of Family Voices State Coordinators and 100% of the Family-to-Family Health Information and Education Centers (F2F) provide data on family needs, consistent with National Survey F2F Centers implemented in 6 more States Family Voices Cultural Competence/Outreach Plan is fully implemented.

10. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program (3) Medical Home -Desired National Status by 2005 75% of Title V State CSHCN agencies have a plan for statewide implementation Medical home accepted as the standard of care for primary and specialty care providers Medical home promotes and integrates 6 outcomes of an integrated system of care Evidence-based data gathered and analyzed for the cost- effectiveness of care coordination and the improved outcomes associated with medical homes for CYSHCN

11. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program (4) Adequate Financing -Desired National Status by 2005 Utilization & cost profiles of CSHCN widely disseminated and innovative risk models used 3 health plans have QA initiatives for CSHCN & use various strategies to identify and stratify CPT coding modifications accepted by AMA & increasingly accepted by major insurers At least 5 key employers initiated steps to improve health & work support benefits 7 States decreased uninsured and/or increased number with adequate insurance

12. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program (5) Universal Newborn Hearing Screening -Desired National Status by 2005 All States screen 90% of newborns for hearing loss prior to discharge from nursery Medical homes established for 80% of all newborns screened Part C programs have (a) established standards for quality pediatric audiologic assessment and treatment and (b) increased capacity to meet needs Linked data systems to facilitate long term follow-up will be established in at least 30 States

13. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program (6) Integrated Community Systems -Desired National Status by 2005 75% of State programs have implemented strategies to build/monitor/measure integrated community systems 100% of States/jurisdictions have access to technical assistance, information sharing, and funding Status reports available on all States’ implementation of easy-to-use community-based service systems

14. Maternal and Child Health Bureau www.mchb.hrsa.gov Integrated Services Branch Program (7) Adolescent Transition -Desired National Status by 2005 HRTW II projects deliver replicable components from State implementation models At least half of CSHCN programs identify transition priorities, with needs assessments and youth advisory councils in place At least 10 States implement HRTW components and work collaboratively with other partners on transition for YSHCN The Physicians’ Consensus Statement on Youth Transition is disseminated to youth, families, and providers, and is followed as standard practice

15. Maternal and Child Health Bureau www.mchb.hrsa.gov Genetics Services Branch Program 1. Facilitate the development of health care and public health infrastructure to enhance and expand newborn screening programs and to improve linkages among them and the state and community systems of care for CSHCN. 2. Examine emerging issues and evaluate emerging technologies in genetics with a special emphasis on the financial, ethical, legal and social implications of these issues/technologies for MCH populations.

16. Maternal and Child Health Bureau www.mchb.hrsa.gov 3. Improve the genetic literacy of the MCH population by enhancing its understanding of the benefits, risks, limitations, and implications of genetic testing and the role of genetic information in improving health practices. 4. Provide leadership in defining the educational needs in genetics of health professionals working with the MCH population. Genetics Services Branch Program

17. Maternal and Child Health Bureau www.mchb.hrsa.gov 5. Support the National Hemophilia, the Thalassemia Comprehensive Care and the Sickle Cell Disease Newborn Screening Programs as a model of comprehensive care for the delivery of genetic services: testing, counseling, education and coordinated system of services. 6. Build on the expertise gained with the MCH population to provide national leadership on expanding and enhancing genetics services for the entire population. Genetics Services Branch Program

18. Genetic Services Agency and National Leadership Infrastructure Delivering Genetic Services Translational

19. Maternal and Child Health Bureau www.mchb.hrsa.gov Title XXVI of Children’s Health Act 2000 Screening for Heritable Disorders in Newborns and Children To expand newborn and child screening programs Involves 4 agencies: HRSA, AHRQ, CDC, NIH Three parts: grants to states, evaluation and established advisory committee Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children Advise the Secretary on science and technology for expanding or enhancing screening for heritable disorders in children

20. Maternal and Child Health Bureau www.mchb.hrsa.gov Genetic Branch Initiatives FY 2004 (1) Family History as an Educational Tool utilize a consumer-based family history tool to increase awareness about genetics Regional Genetics and Newborn Screening Collaboratives enhance and support the genetics and newborn screening capacity of states within defined regions

21. Maternal and Child Health Bureau www.mchb.hrsa.gov Genetic Branch Initiatives FY 2004 (2) Genetics Public Policy increase the knowledge base in the area of genetic services evaluate existing data and recommend and weight priorities on health and economic value of genetic services, including genetic testing, education and counseling to provide important cost, health outcomes, and quality of care data address the ethical and social issues surrounding the use of new and emerging technologies Evaluate current and future models for delivering genetic tests and other genetic services

22. Maternal and Child Health Bureau www.mchb.hrsa.gov Resource Center National Newborn Screening and Genetics Resource Center - http://genes-r-us@uthscsa.edu Serves as a focal point for national newborn screening and genetics activities, and provides related resources to benefit consumers, health professionals, the public health community, and government officials.