1. Dental Care for Children and Youth with Special Health Care Needs AAPD Conference Children and Adults with Special Health Care Needs November 17-18, 2006, Chicago Betsy Anderson, Family Voices

2. National Network of Families & Friends http://www.familyvoices.org Family to Family Health Information Centers (35!) Meetings and Workshops Research and Data Networking and Partnerships FAMILY OICES V

3. Bright Futures Materials: The Family Pocket Guide is a quick reference that contains: How to choose and work with your health care provider What to expect as your child grows What will happen at health visits from birth to age 21 Color-coded by age Various tip sheets in the appendix for all ages Complements the Bright Futures Guidelines for Health Supervision of Infants, Children and Adolescents

4. Dental Health Issues for Children

5. Dental Health Issues for Children with Special Healthcare Needs

6. Family Roles and Partnerships: Families are their children’s first and best advocates, providing and overseeing their children’s health and development.

7. Initially - no where to go but up – families were not seen as partners or providers Roles for families at many levels MCHB and other champions! Concept of family-centered, community- based, coordinated, culturally competent care Concepts now selling points Partnerships at many levels Family Roles and Partnerships:  Obstacles  Successes

8. Care and Services Raising children is important, hard work – 24 hours a day.

9. Few services, giant gaps in service Lack of parent presence From limited care to fragmented care Care in specialty settings – primary care not comfortable or confident in their roles Innovation, technology, techniques Success in education (IDEA) prompted changes Each specialty “bloomed” Family roles have become more diverse Family roles are recognized and supported Care and Services:  Obstacles  Successes

10. Information and Data Children’s health happens in many settings – home, school, community. Families are the links between caregivers and settings.

11. Information and Data: limited to non-existent not family friendly not matched to family roles  Obstacles

12.  Successes Tremendous progress Internet dissemination Oral Health Data - Nat’l Survey CSHCN (2001) - Nat’l Survey of Children’s Health (2003) - Family Voices: provision of oral health info has doubled, 2005-2006 MCHB Performance Measures National and State Measures Information and Data:

13. Financing Your child’s health care providers want to help you raise healthy children. Children’s regular health and dental visits are excellent times to get this help.

14. Early on - seldom mentioned Soon after and ongoing - major health and economic consequence for the entire country Katie Beckett waivers (1982); children assisted by technology SCHIP (1997 – being reauthorized ‘07) Increase in understanding of issues Increase in advocates  Obstacles Financing:  Successes

15. Recommendations & Resources There are lots of right and good ways to raise healthy children.

16. 6 Critical Indicators of Progress Medical Home Insurance Coverage Screening Organization of Services Family Roles Transition to Adulthood Promoting the Oral Health of CSHCN In Support of the National Agenda Maternal and Child Health Bureau

17. Important Initiatives Advancing the Agenda National Maternal and Child Oral Health Resource Center ASTDD – State forums and plans Children’s Dental Health Project AAP – PROHD Project And others!

18. Family-Centered Care Be intentional – extend FCC to oral health practitioners Recognize families as primary care providers and models for their children Involve families in program, policy, and practice areas – work with families to define roles  Recommendations

19. Care and Services Create “virtual teams” to bring together those involved in a child’s care Emphasize health and wellness for CSHCN Build on Dental/Medical Homes and Bright Futures Quality Care - define & discuss with families  Recommendations

20. Information and Data: Participate in and help shape national, state and local initiatives Provide more specific and accessible data on –insured/uninsured –co-pays –out-of-pocket expenses for families  Recommendations

21. Financing: Express and define financing needs that partners can support Put teeth and gums back into the child! Integrate health and dental health Work broadly for good health for all  Recommendations

22. Family-to-Family Health Information Centers FV topical call on oral health (June ’07) Work w/partners to identify best oral health info for families (spring ’07) Family Voices Health and Wellness Survey (current) http://go.tufts.edu/familymatters  Resources & Initiatives FAMILY OICES V

23. Build a community of champions for dental health Be advocates! Be out there! Be visible! Recent APHA Conference  Finally If you find your life’s passion, you’ll never work again.

24. Health promotion works! Families matter! Raising healthy children is everybody’s business!