Dental Care for Children and Youth with Special Health Care Needs

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

3. Complements the Bright Futures Guidelines for Health Supervision of Infants, Children and Adolescents 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

4. www.brightfuturesforfamilies.org Dental Health Issues for Children Thoughts for families · Dental health is more than teeth – it also includes mouth, face, nutrition, speech, chewing, swallow - ing, appearance, well being, and confidence. · Ideas about dental health and what can be done may be different from when you were growing up. New dental procedures such as seal ants , cosmetic treatments, and pain man - age ment have been added and improved. · Ex periences and beliefs about dental care v ary from country to country . · Cost and cover age can be barriers to good dental care High costs of care ­ Lack of information about how to get services covered ­ F amilies with coverage may face red tape and delays in determining ­ what is covered, pre - approvals, and co - pays. P rovider s may be hard to fin d, especially for those with Medicaid or certain · dental plans. · Family - centered care exists in some , but not all, dental practices . Needed is : Understanding of families’ roles in day to day care ­ and special situations I nformation especially for families and children ­ S upport for children and families ­ · Communication and coordination among child health providers - dentists, pediatricians, and other caregivers – is needed. · Dental care is not typically part of regular health insurance , convey ing a confusin g message. ________________ ________________________________________________________________________ · · · 2340 Alamo SE, Suite 102, Albuquerque, NM 87106 Telephone 505 - 872 - 4774 Fax 505 - 872 - 4780 Toll · · Free: 1 - 888 - 835 - 5669 E - mail: kidshealth@familyvoices.org Internet: http://www.familyvoices.org Dental Health Issues for Children

5. Dental Health Issues for Children with Special Health Care Needs Thoughts for families All of the issues mentioned on the previous page may also a pply for children with special needs. T hese issues may be “heightened.” Additional c on cerns may include: · N eed for a ccessibility, modification, accommodation. Dental offices and practices should comply with Americans ’ with Disabilities Act standards . · Staff attitudes and comfort caring for children with special needs · Staff training to addr ess information, support, and specific treatments for children with special needs. · Medications a child is taking may cause increases in cavities and plaque. · Appropriate recommendations for anesthesia . Some children may need anesthesia for treatments and procedures that others do not . In other cases, children with special needs may be inappropriately anesthetized. · C onsideration that c osts for treatment, equipment and supplies will likely be in addition to other health care costs families face. · Under ma naged care, some procedures may be denied, thus requiring families to appeal in order for children to receive needed services. · Families will need to c oordinat e dental appointments and care with other health care services and therapies child ren receive . · C ommunication and coordination with children’s other health care professionals in order to provide quality, family - centered care. · Children and families benefit from dental health professionals who act as advocates for children’s dental and other health ca re and services ! Note that for some children with special needs, there are no special dental health issues! Our thanks to Bright Futures at Georgetown University for graphics Supported by G97 MCO 4453 from the Maternal and Child Health Bureau, Division of Child, Adolescent and Family Health Health R esources and Services Ad ministration, Department of Health and Human Services 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. Family Roles and Partnerships: • Obstacles • Initially - no where to go but up – families • were not seen as partners or providers • Successes • 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

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

9. Care and Services: • Obstacles • 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 • Successes • Innovation, technology, techniques • Success in education (IDEA) prompted changes • Each specialty “bloomed” • Family roles have become more diverse • Family roles are recognized and supported

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: • Obstacles • limited to non-existent • not family friendly • not matched to family roles

12. Information and Data: 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

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

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

16. Maternal and Child Health Bureau 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

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 • Recommendations • 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

19. Care and Services • Recommendations • 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

20. Information and Data: • Recommendations • 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

21. Financing: • Recommendations • 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

22. V OICES FAMILY • Resources & Initiatives • 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

23. Finally • Build a community of champions for dental health Be advocates! Be out there! Be visible! • Recent APHA Conference 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!