Serving Special Populations Medical and Dental Homes Children with Special Health Care Needs

1. Serving Special PopulationsMedical and Dental HomesChildren with Special Health Care Needs Washington Oral Health Regional Forum August 1, 2008 Washington State Medical Home Project Katherine TeKolste, MD - Co-Director

2. Partners: DOH, CSCHN Program Dept. Pediatric Dentistry MHLN Teams – 21 Community-based teams WC AAP CCSN CHDD Division of Genetics and Developmental Medicine, UW ITEIP Family Voices of Washington Fathers’ Network OSPI LEND Program Parent to Parent Program Washington Family to Family Network Medical Assistance Administration Washington State Medical Home ProjectUniversity of Washington - CHDD

3. Medical Home:High-quality health care partnership Families, physicians and office staff working together to: • Provide acute and preventive primary health care and a central location for health records • Set priorities and plan a child’s care • Identify medical and non-medical services needed to optimize outcomes • Coordinate specialty care & community services • Connect with information resources

4. In a context of: • Respect, mutual trust and collaborative decision-making in health care encounters • Respect for cultural and religious beliefs and personal preferences Originated in context of CSHCN. Evolved to include all children and adults… Endorsed by the AAP, AAFP, ACP, AOA

5. Oral Health Issues:Prevalence in General Population Oral disease is the single most common chronic childhood disease • Five times more common than asthma • 2% of 1-2 year olds have at least one tooth with decay • 18% of 2-5 year olds in Head Start/ECEAP programs (WA) have ECC • Citizen’s Watch for Oral Health • Washington State Smile Survey, 2005

6. Dental High-Risk Groups: • Young children – ECC • Washington’s 1 yo are 5x and 2 yo twice as likely as children nationwide to have dental decay (Citizen’s Watch for Oral Health) • Children from families with active dental disease (AAPD Caries Risk Assessment Tool) • CHSCN • Across all income levels, 2x as likely to have unmet oral health needs as non-SHCN peers (Nat’l Maternal Child Oral Health Resource Center) • With severe dental decay, often need treatment in hospital operating room (Citizen’s Watch for Oral Health)

7. PCP Steps: • Prevention emphasis: • Reinforce importance of daily oral care • Provide information on oral hygiene • ‘Innoculate’ against cavities – review fluoride exposure, supplement as needed • Review diet and feeding practices that increase risk for caries and gingivitis • Review medications and dosage regimens to minimize oral health side effects • Monitor interactions of oral and systemic health • Recognize and teach implications of poor oral health on overall health across the lifespan

8. Bright Futures in Practice:Oral Health Pocket Guide http://www.mchoralhealth.org/pocket.html • To help health professionals implement specific oral health guidelines during pregnancy, postpartum, infancy, early childhood, middle childhood and adolescence • Addresses risk assessment for caries, periodontal disease, malocclusion and injury.

9. http://www.mchoralhealth.org/PediatricOH/index.htm

10. Cost Savings of Early Oral Health Care for Preschool Children • Over the course of 5-year study of N Carolina Medicaid children enrolled at birth: • Average cost per child who had a dental visit before 1 yo - $262 • If child’s first visit not until 4-5 yo, cost doubles to $546 • Older age of first dental visit associated with increased restorative and emergency visits for oral health Age at First Dental Visit $492* $546* $449* $339* $262* N=23 249 465 915 823 *Average cumulative dental expenditure per child according to age at first dental visit Savage MF et al. Pediatrics. 2004.

11. Children/Youth with Special Health Care Needs • Children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that required by children generally • 14% of population; 5-6% severe • E.g. children and youth with: • Down syndrome • Seizure disorder • Cleft lip or palate; other craniofacial defects • Cerebral palsy • Intellectual or developmental disability • Vision and/or hearing impairment • Genetic and hereditary disorders

12. The Problem: In surveys of the special needs population, parents and families identify dental care as the most common unmet health care need for their children. CYSHCN - Higher risk for oral health problems • Routine self-care may be difficult or impossible for a child • Motor disability such as seen in spastic quadriplegia • Cognitive or behavioral impairment.  • The underlying disease may impact oral health • Cleft lip and palate • Leukemia.  • The treatment of a chronic disorder may lead to secondary oral health problems, • Gingival hyperplasia with anticonvulsants, methotrexate, immunosuppressants and calciuim channel blockers.

13. CYSHCN: • Need for dental care exceeds need for either preventive or specialty medical care • Individuals with a personal doctor/nurse (medical home) are significantly less likely to have unmet dental needs ‘Dental care should be an integral and explicitly stated part of the comprehensive coordinated services that the medical home aims to provide for CSHCN.’ Lewis C et al. Pediatrics. 2005.

14. Medical Home: Oral Health Strategies • Develop referral, tracking and follow-up protocols, including oral health • Establish collaborative relationships with oral health professionals to ensure coordinated care • Include oral health as part of routine health supervision • Oral health assessment • Anticipatory guidance • Preventive services Nat’l Maternal and Child Oral Health Resource Center

15. The Dental Home “The dental home is the ongoing relationship between the dentist and the patient, inclusive of all aspects of oral health care delivered in a comprehensive, continuously accessible, coordinated, and family-centered way. Establishment of a dental home begins no later than 12 months of age and includes referral to dental specialists when appropriate.” American Academy of Pediatric Dentistry • Endorsed by: • American Dental Association • Academy of General Dentistry • American Academy of Pediatrics

16. Dental Home Concept: Oral health professionals helping families: • Understand what care is needed • Find necessary care • Coordinate care with specialists and other health professionals

17. Dental Home Provides: • Acute and preventive services (AAPD schedules) • Assessment for oral diseases/conditions • Preventive dental health program based on risk assessment for caries and periodontal disease • Anticipatory guidance • Plan for acute dental trauma • Information about care of teeth and gingivae • Dietary counseling • Referral to dental specialists as needed • Transition to adult dentist AAPD

18. Dental Home for CSHCN: AAPD Guideline on Management of Dental Patients with SHCN http://www.aapd.org/media/policies.asp • Provide appropriate preventive and routine dental care • Document informed consent as appropriate to patient’s special needs • Determine optimal communication methods for patient • Appointment scheduling should include determination of the special needs, primary medical care provider, and need for additional time or dental personnel to accommodate needs • Know the patient’s medical history and updates to prevent aggravating a medical condition • Consult with medical providers to coordinate care • Provide summary of findings and recommendations • Understand behavior guidance* – most patients with physical and mental disabilities can be managed in the dental office • Know and use community-based resources to assist with issues from cultural and language preferences to transportation and financial support. • Work with insurers on financial coverage, especially in genetic and congenital conditions with oro-facial malformations *http://www.mchoralhealth.org/Special/mod5_0.htm

19. CSHCN -Stories in the last 48 hours: • Access • Family of child with ID – 2 pediatric dentists (unsuccessful) and then Seattle Children’s community dentist referral. But graduates from pediatric dentist at 21 yo. • HMC used to have dental clinics for SHCN patients, but no longer • Need dental care from someone who speaks the same language as the child/family • Physician with 18 yo former preemie with CP, shunted HC, ID and significant orthodontic needs (small jaw, crowded teeth, very high arched palate) cannot access care at UW, CHRMC or private orthodontist to date – trying almost 2 years to get care for this member of a Spanish-speaking family on Medicaid • Transitions: • Children’s Village patients aging out at 18 years and no adult program to serve the population (DECOD consultation in progress) • Very difficult to find dentists who accept adults on Medicaid

20. CSHCN -Stories in the last 48 hours: • Extra care needs • ‘Long-term consequences of oral health were not at the top of the list: feeding issues, drooling, teeth grinding, biting, pica, oral sensitivity, inadequate oral hygiene (difficult to brush, impossible to floss) and dentist ‘just doing the best (s/he) could’ on q 6 mos cleaning; ended up with severe gum disease • Physical access issues – e.g. wheelchair • ‘There is a great need for the dentist or hygienist to take adequate time to address oral sensitivity and sensory integration issues’…private room, quiet music, calm and pleasant voice, explaining before doing - understand, ask and accommodate • Privacy for individual who must wear a diaper and may need to be changed while at the office • Expenses and insurance coverage • Medical vs dental coverage for maxillofacial problems; high out-of-pocket expenses ($3,000-6,000 not uncommon), esp. in genetic and congenital disorders with oro-facial manifestations • Loss of family dental insurance with retirement – move onto Medicaid which few providers take These themes are echoed in key informant interview (WA) and survey (UT)

21. Access to a Dental Home: • Fewer than half of US dental schools offer meaningful clinical experiences in care of very young children/CSHCN • Fewer than 1 in 10 general dentists regularly provide care for children and youth with CP, ID or who are medically fragile (Nat’l Maternal and Child Oral Health Fact Sheet) • In King County: (Smith RG, Lewis CW. Pediatr Dent. 2005.) • 99% of dental offices seeing children would see a new 5 yo patient, but only 15% would if on Medicaid • 9% would see new under 1 yo, but only 3% would accept if on Medicaid

22. Access? • 136 Pediatric Dentists in WA (AAPD) • At best: 4337 dentists licensed in WA (How many are general dentists, active?) • If 10% see CSHCN  434 • Dentists billing Medicaid 2008 (All seeing children?) – 693 • WA 0-5 population – 434,000 (DOH, 4/1/2008) • WA CSHCN population – 214,600 (CSHCN survey 2005-6)

23. How to provide care? • 4,520 children per pediatric dentist • Of which 1,578 have SHCN • 1,078 children per general and pediatric dentist who see CSHCN • 702 0-5yo + 376 with SHCN • 936 children per Medicaid billing dentist • 626 0-5yo + 309 with SHCN • 97 children 0-5 per general dentist (assuming all are general dentists) OR OR OR

24. Other Providers: • Dental Hygienists – 4443 (2007) • Oral Health Assessments • Cleaning • Sealants and some restorative • Dental Assistants • Dental Students • Some prevention and education at WIC • Primary Health Care Offices • Anticipatory guidance, fluoride varnish • Other?

25. Washington Resources: • UW Dental Education in the Care of Persons with Disabilities (DECOD) • Seattle Children’s • Odessa Brown • Community Health Clinics (KGC) • Yakima – Children’s Village, Farm Worker’s Clinic • Access to Baby & Child Dentistry-ABCD • Smile Mobile

29. Practice Tools for Dental Offices Caring for Special Needs Children: From The Maternal and Child Oral Health Resource Center Special Care: Dental Office Considerations Checklist Special Care:  Getting to Know Me Special Care: Family Satisfaction Questionnaire

31. http://www.scdonline.org/ • American Academy of Developmental Medicine and Dentistry • AAPD Dental Home resource center • International Assoc. for Disability and Oral Health • And others….

32. What will work for our future?

33. Issues: • Workforce - numbers, distribution, capability/training • Knowledge gap – child development, family and social context, behavior management, what families want from medical/dental homes • ‘Willingness’ gap – Ethics, social responsibility, reimbursement enhancements, carrots?

34. Examine New Workforce Paradigms • Medical Office Prevention Efforts • ICHOP • Learning Collaboratives • (discussion of overlapping roles of medical and dental homes) • Oral Health Practitioners (MN) • Dental Therapists (NZ) • Nursing/Dental (NYU) – synergistic relationship to improve overall health

35. New paradigms: • Special clinics – Premier Health Program, NYC • ABCD program for CSHCN • Centers of Oral Health Excellence • Head Start – AAPD linkage • Dental Internship requirements (NY 2007) • Increased experience with complex problems • Opportunity for hospitals to establish dental training programs

36. Align With Referral Capacity: As a community, move for change – improving dental outcomes for young children and CSHCN is a priority; effective prevention will leverage significant cost savings and alleviate unneeded suffering… • Dental professionals • Capacity – esp. for subpopulations by age, ESL • Establish referral criteria with local dental resources • Other community resources • WIC nutritional education • PHD/LHD oral health specialists

37. Connecting Your Medical and Dental Community: • Personal links – your own doctor/dentist • Local Medical and Dental Societies • Organizational – • Washington State Dental Association, Medical Association, WC AAP • Public Health Department • DOH-CSHCN Program, • Oral health liaison, CSHCN Coordinator in LHJ • Community Health Clinics, FQHCs • Medical and Dental Schools, Faculty Contacts • ABCD Program

38. Medical-Dental Linkage - Models • West Treasure Valley, ID • 1:1::MD:DDS relationships for direct patient referral • Boise, ID • Toll-free 211 referral hotline “Idaho CareLine” with rotating list of dentists accepting patient on MD referral • Yakima, WA – • Smile Mobile; ABCD Program • Referral system for adults w/HIV • Pilot for access for pregnant women • Initiation of Children’s Village/ DECOD Transition collaboration

41. Take Home Messages: • Prevent EARLY • Break down silos for prevention • Rejoice in children being embedded in families who work to make it happen (may not be as true for other populations you will discuss today). Leverage family power. • Start to organize services at your community level • Be open to examining new models.

42. ‘Considerable work remains to define the health team composition (including dental professionals) and technology requirements, develop the optimal medical home [and dental home] curricula and performance measures, and evaluate the effectiveness and cost of coordinated services as well as their financing and methods of provider compensation.’ Kenney MK et al. Parental perceptions of dental/oral health among children with and without special health care needs. Ambulatory Pediatrics. In press.