1. Future Research Agenda for MCH: Children with Special Health Care Needs November 10, 2004 Washington, DC Deborah Allen, ScD Boston University School of Public Health

2. Children with special health care needs resemble other children Basic patterns of growth and development Dependence on parents within broader community Vulnerability to typical pediatric risks Need for accessible, high quality primary and preventive services Need for accessible, high quality acute services Variability in response to psychosocial challenges

3. Children with special health care needs differ from other children Variation from typical patterns of growth and development Heightened and/or prolonged dependence on family and broader community Need for elaborated primary, preventive and acute care Need for accessible, high quality specialty and/or chronic care Exposure to unique psychosocial challenges

4. What “special” research issues does that imply? Variation from typical patterns of growth and development Unique developmental issues Heightened and/or prolonged dependence on family and broader community Family needs and coping strategies Community-based systems of care Need for elaborated primary, preventive and acute care Medical home as hub of comprehensive system of care Need for accessible, high quality specialty and/or chronic care Care coordination as feature of medical home Disease management/secondary and tertiary prevention Exposure to unique psychosocial challenges Psychosocial support strategies at different stages of development

5. Where is relevant research done NICHD – NICHD researchers examine growth and development, biologic and reproductive functions, behavior patterns, and population dynamics to protect and maintain the health of all people. AHCRQ – To improve the quality, safety, efficiency, and effectiveness of health care for all Americans. CDC – CSHCN survey: The primary goal of this module is to assess the prevalence and impact of special health care needs among children in all 50 States and the District of Columbia. – CDC also coordinates efforts to track progress on Healthy People 2010 HRSA – Public health service systems and infrastructures at the community, State and/or national levels, as they apply to different maternal and child health (MCH) populations based on demographic, epidemiological, and/or other factors. – MCH services and systems of care efforts to eliminate health disparities and barriers to health care access for MCH populations. – Services and systems to assure quality of care for MCH populations. – Promoting the healthy development of MCH populations CMS – The research programs at the Centers for Medicare & Medicaid Services (CMS) help develop, test, and implement new health care financing and payment policies. They also evaluate the impact of CMS programs on beneficiaries, providers, States, and other customers and partners. The scope of these activities embraces all areas of health care: costs, access, quality, service delivery models, and financing and payment approaches. OSERS/NIDRR – NIDRR's research focus includes such areas as: employment outcomes, health and function, technology for access and function, independent living and community integration, associated disability research areas, knowledge dissemination and utilization, and capacity building for rehabilitation and international activities

6. Key data sources NCHS – NHIS – National CSHCN Survey – National Child Health Survey YBRFS BRFSS NLSY NLS

7. A public health perspective All research on children is relevant All research on childhood conditions is relevant Public health has emphasized – Cross disability approach – Attention to function and integration – Systems approach Title V at state and national level frames these issues in terms of 2010 Agenda/New Freedom Initiative – Family participation – Medical home – Adequate financing – Screening – User-friendly services – Transition

8. Where does the research stand now National CSHCN Survey a huge advance Useful information from other studies – On a national level – On a localized level Otherwise – Small scale, time limited evaluation efforts – Small number of more focused studies – Limited consistency from study to study re: Study population Outcomes of interest Nature, scope or scale of intervention's Hypotheses about relationship of intervention to outcome

9. Elusive topics: Service systems Impact of medical home on child, family, provider, system Cost effectiveness of medical home Best practice re care coordination Cost effectiveness of care coordination Impact of Early Intervention on child, family, system Impact of Special Education on child, family, broader community

10. Elusive topics: Children and youth Factors that promote quality of life for CYSHCN – Young and school aged children, teens Factors that promote successful transition for YSHCN Factors that promote quality of life for CYSHCN – Young children and schoolaged children teens Factors that promote successful transition for YSHCN Impact of race, gender and other potentially interacting attributes on youth

11. Where do we need it to go 1. Identify children via CAHMI screener Include all CYSHCN or definable subset 2. Achieve consensus on outcomes and indicators 3. Parse out and define intervention components 4. Develop families of studies

12. How will we get there – A systems approach to research Agreement on goals and terms at the national level Coherent funding strategy Cooperation among grantees and researchers around program implementation, documentation and evaluation Cooperation among federal agencies – Within HHS – Between HHS and Education