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An Olympian Task: Universal Access to Preventive and Comprehensive Dental Services for Children with Disabilities Sanford J. Fenton, D.D.S, M.D.S Strong Roots for Healthy Smiles Virginia Dental Summit Richmond, Virginia July 27, 2007 Vulnerable Patient Populations • Significant dental health disparities identified in children and adults with intellectual disabilities Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation, Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation, February 2002 Vulnerable Patient Populations • Over 7 1/2 million people in the U.S. have intellectual disabilities & over 1.6 million non-institutionalized children (ages 5-15) • Persons with ID are living longer and have life stages health challenges • Oral health is compromised by underlying conditions, limits on comprehension, self-care ability and judgement (e.g., tobacco use, diet, oral hygiene, need for care, etc.) Vulnerable Patient Populations • Underemployment and non-employment - lack of private medical/dental benefits • Structure of public dental care financing (M&M) • De-institutionalization to community-based (non-) system Understanding Terms The old term Mental Retardation is now referenced in the terms intellectual disabilities, learning disabilities, developmental disabilities. Understanding Whatever term we choose we must understand that these children are susceptible to the same oral problems as other children. Understanding Many children with ID/DD have compounding disabilities or co- morbidity. Children with Special Health Care Needs Who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services of a type or amount beyond that required by children generally. 18% of US children and adolescents ages 18 and under have a chronic condition or disability Conditions that may lead to special health care needs • Diabetes • Asthma • Vision and hearing impairments • Emotional disturbances • Cleft lip/palate and other craniofacial defects • HIV Conditions (Continued) • Genetic and hereditary disorders • Cerebral palsy • Learning and developmental disabilities • Mental retardation (intellectual disabilities) – Down syndrome and other causes Children with Intellectual Developmental Disabilities • Population represents about 3% • Worldwide about 170,000,000 • US prevalence is about 3 in 100 births. Risk Factors/ Prenatal • Cerebral malformation ( microcephaly ) • Chromosomal (Down Syndrome) • Genetic • Infection • Alcoholism (FAS) • Pregnancy toxemia • Diabetes Mellitus • Prenatal malnutrition Postnatal Risk Factors • Trauma • Meningitis • Encephalitis • Lead poisoning • Missed diagnosis “pseudo” e.g. CP, visual and hearing impairment, ADD, Learning disorders, autism. Mental Retardation • Mild: 50-70 IQ • Moderate 30-50 IQ • Severe to profound < 30 IQ Down Syndrome • Estimated at 1 in 700 births • Medical co-morbidity – Congenital heart disease – Atlanto-axial instability – Leukemia – immunodeficiency – obesity – osteoporosis (female) – premature aging Down Syndrome Oral Factors • Jaw abnormalities • Malocclusion • Poor mastication • Macroglossia • Salivation • Tooth anomalies/shape and number • Mouth breathing and poor lip posture Down Syndrome /Behavior Factors • Down Syndrome children exhibit a wide range of intellectual ability, caution in assessing is necessary. • Motivation • Cooperation • Communication • Depression (Don’t forget emotional problems) Barriers to Oral Health • User/Caregiver Barriers • Provider Barriers • Societal Barriers User/Caregiver Barriers • Physical, mental and cognitive ability to perform oral hygiene, make choices or cooperate with care and treatment • Diet • Communicating needs • Fear and anxiety • Self empowerment User/Caregiver Barriers • Parental/caregiver awareness • Reluctance to seek or accept care • Knowledge and skill in support staff, parent care providers. • Low expectations Professional Service Barriers • Lack of skill, training and confidence • Poor reimbursement system • Attitudes of Health Professionals: Siperstein study in Boston. University of Mass. Siperstein G et al. Multinational study of attitudes toward individuals with intellectual disabilities, Special Olympics, June 2003. Societal Barriers • Access • Poor system for health care reimbursement • Attitudes • Low expectations Oral Health Care / Management Pre-school and School age • Integrated care • Early initial dental visit • Regular dental appointments Integrated Care Partners • Parent • Social Services • Occupational Therapist • Medical Pediatric • Transportation • Dental Professional Team • School teachers and staff. • Other Medical Specialists • Community organizations • Speech and language • Nursing visitation (for developmental monitor) Oral Health Care/ Prevention • Diet Monitoring • Fluoride use • Parent/caregiver education • Sealant • Other Health Professional Education – Nursing – Medical – Educators – Therapists Oral Health Care and Treatment Strategies • Friendly and • Awareness of supportive dental team disability by dental • Continuity of team providers is necessary • Dental operatory • Allow time for adaptation acclimatization to • All patients deserve dental environment and are entitled to full • Time to explain each service and care. step Communication Considerations • Hearing and Vision • Verbal cognition impairment • Limited expressive • Attention span vocabulary • Poor auditory memory • Motor deficits • Process and response including weak or time uncoordinated oral musculature. • Increased anxiety Communication Management • Know child’s preferred method of communicating • Signing is very helpful • Slow , clear and calm • Language is appropriate • Patience- allow time for response. Treatment Planning • Medical History • Dental Expectations • Level of MR (realistic, compassionate, • Cooperation Level expedient, definitive, treatment that can be • Mobility maintained.) • Dexterity • Family support • Oral Hygiene (what works • Economic constraints and what doesn’t) • Settings for care • Communication and motivation • Inpatient/outpatient • Dental findings • Prognosis Treatment Planning • Risk vs. benefit • Quality of life At the end of the day can you honestly say that your treatment will improve the quality of life of your patient? National Survey of CSHCN Chartbook 2001 • Delaware 30,409 children • Kentucky 156,211 children • Maryland 209,097 children • New Jersey 266,804 children • North Carolina 280,771 children • Tennessee 198,647 children • Virginia 270,347 children • West Virginia 66,201 children http://mchb.hrsa.gov/chscn/pages/states.htm National Survey of CSHCN Chartbook 2001 Percent of Children with SHCN Total Child Prevalence 0-5 yrs 6-11yrs 12-17 yrs National 12.8 % 7.8 % 14.6 % 15.8 % 1. West Virginia 16.7 % 9.0% 20.7 % 19.8 % 2. Kentucky 15.7 % 11.2 % 17.7 % 17.8 % 3. Virginia 15.3 % 9.0 % 16.7 % 17.1 % 4. Maryland 15.2 % 9.2 % 17.9 % 18.2 % 5. North Carolina 14.0 % 8.1 % 16.7 % 17.1 % 6. Tennessee 14.0 % 9.2 % 15.8 % 16.9 % 7. Delaware 13.5 % 9.5 % 17.7 % 18.5 % 8. New Jersey 12.6 % 7.9 % 14.6 % 15.0 % www.cdc.gov/nchs/about/major/slaits/cshcn.htm Percent Children (5-20 Yrs) with Disabilities 2005 State Rankings http://factfinder.census.gov 1. Maine 10.2 % 3. Kentucky 9.4 % 8. West Virginia 8.6 % 13. Delaware 7.8 % 18. Tennessee 7.5 % 20. North Carolina 7.4 % 27. Maryland 6.7 % United States 6.7 % 34. Virginia 6.5 % 48. New Jersey 5.1 % 51. Hawaii 4.4 % Disability Status Profile For Virginia Noninstitutionalized Children Ages 5-15 www.kidscount.org/census/ Number % of Children Children ages 5 to 15 1,087,367 100.0 Children with no disability 1,019,969 93.8 Children with one disability 56,029 5.2 Sensory disability 4,742 0.4 Physical disability 3,482 0.3 Mental disability 46,191 4.2 Self-care disability 1,614 0.1 Disability Status Profile For Virginia Noninstitutionalized Children Ages 5-15 www.kidscount.org/census/ Number % of Children Children with two or more disabilities 11,369 1.0 Includes a self-care disability 7,427 0.7 Does not include a self-care disability 3,942 0.4 Source: Population Reference Bureau, analysis of data from the U.S. Census Bureau, 2000 Census Summary File 3 (Table PCT26) Inadequate Access to Dental Care: The Evidence • Yale Literature review (SOI, 2001) • Surgeon General’s Report - Oral Health in America (2000) • Surgeon General’s Report on Health Disparities and Mental Retardation (2002) • Special Olympics Special Smiles Data • National Goals Conference for MR (2003) Dentistry in the U.S. • The majority of dental care is provided by private practice dentists – 175,705 dentists professionally active/licensed (2004) – 162,181 dentists (92 %) in private practice – Dental Profession - 80% general practitioners – Medical Profession - 40% MD’s in primary care practices Dentistry in the U.S. • National Health Service Corps offer scholarships and loan repayment opportunities to encourage newly licensed dentists to locate in underserved areas and provide dental care for underserved populations. • The current definition of underserved area or underserved populations does not recognize people with intellectual disabilities as underserved. Dentistry in the U.S. • Insurance Coverage for Dental Care – For every child under age 18 without medical insurance, there are at least two children without dental insurance. – For every adult 18 years or older without medical insurance, there are at least three adults without dental insurance. Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation U.S. Department of Health and Human Services February 2002 Action Steps Goal Three Improving the Quality of Health Care for People with ID • Priorities: Identify priority areas of health care quality improvement for persons with ID. • Standards of Care: Identify, adapt, and develop standards of care for use in monitoring and improving the quality of care for persons with ID. • Use: Ensure that the practice, organization, and financing of health care services for individuals with ID promote improvement in their quality of care. Action Steps Goal Four Train Health Care Providers in the Care of Adults and Children with Intellectual Disabilities • Professional education: Integrate didactic and clinical training in health care of individuals with ID into the basic and specialized education and training of all health care providers. • Interdisciplinary education and training: Support development and dissemination of effective training modules in interdisciplinary practice. • Provider Competence • Continuing Education Dental School Curriculum Trends Fenton SJ, Special Care Dentistry, 1999 Curriculum Hours devoted to Special Care Dentistry 15 10 Hours 5 0 1992 1993 1994 1995 1996 1997 1998 1999 2000 Years Dental School Curriculum Trends • Almost 2/3 of dental students (3rd & 4th year) reported having never treated a person with MR • 82% reported < 5 hours of didactic time devoted to treating individuals with MR • 3/4 of dental students do not feel prepared to treat persons with MR Wolff AJ, Waldman HB, Milano M, Perlman, SP. JADA, 135: 353-357, 2004 Dental Hygiene Education • 48% of 170 programs had 10 hours or less of didactic training (including 14% with 5 hours or less) • 57% of programs reported no clinical experience at all Goodwin M, Hanlon L, Perlman, SP. Forsyth Dental Center, 1994 Commission on Dental Accreditation Predoctoral Dental Education Standard 2-26 Effective Date: January 1, 2006 Graduates must be competent in assessing the treatment needs of patients with special needs. Standard 2-26 Intent: An appropriate patient pool should be available to provide a wide scope of patient experiences that include patients whose medical, physical, psychological, or social situations may make it necessary to modify normal dental routines in order to provide dental treatment for that individual. These individuals include, but are not limited to, people with developmental disabilities, complex medical problems, and significant physical limitations. Clinical instruction and experience with these patients with special needs should include instruction in proper communication techniques and assessing the treatment needs compatible with the special need. These experiences should be monitored to ensure equal opportunities for each enrolled student. Action Steps Goal Five Ensure that Health Care Financing Produces Good Health Outcomes for Adults and Children with ID • Outcomes and financing: Determine relationships among diverse financing mechanisms, service packages, and health outcomes for individuals with ID. • Services: Identify a package of health care services for persons with ID that will produce good outcomes in terms of health maintenance, management of illness, functionality, and life goals across the individual’s lifespan. Medically Underserved Population According to HRSA, a population is considered to be a Medically Underserved Population (MUP) if it receives an Index of Medical Underservice (IMU) score less than 62.0. The IMU is calculated by adding the scores from four (4) separate data sets: V1-Percentage of population living below the poverty line V2-Percentage of population over the age of 65 V3-Infant mortality rate among target population V4-Ratio of primary care physicians to patients in population http://bhpr.hrsa.gov/shortage/muaguide.htm Medically Underserved Population V1 = 5.6 33% of children and adults with ID live in poverty (Mental Retardation: Vol.41, No 6, pp.446-459) V2 = 19.8 10% of the ND/ID population are over the age of 65 V3 = 0.0 Infant mortality of the ND/ID population is 47-94/1000 (National Vital Statistics Reports, Vol. 53, No. 5, October 12, 2004) Medically Underserved Population V4 = 28.7 Number of primary care physicians willing and capable of caring for the ND/ID population is very difficult to estimate although anecdotally the number is fairly low. By default, the maximum score of 28.7 was used to calculate the IMU. Medically Underserved Population HRSA Determination Score for Eligibility 62.0 or Less IMU Calculation for ND/ID Population V1 = 5.6 V2 = 19.8 V3 = 0.0 V4 = 28.7 54.1 Action Steps Goal Five Ensure that Health Care Financing Produces Good Health Outcomes for Adults and Children with ID • Leveraging: Evaluate models for leveraging health dollars to maximize purchasing power by and for persons with ID. • Cost Effects: Explore strategies to offset financial costs to providers and health services programs that are associated with meeting specialized needs of patients with ID. Action Steps Goal Six Increase Sources of Health Care Services for Adults, Adolescents, and Children with ID, Ensuring that Health Care is Easily Accessible for Them • Easier access: Make access to health care services less complicated for persons with ID and their families and caregivers, whether in urban, rural, or remote communities. • Community-based care: Integrate health care services for person with ID into diverse community programs. Special Olympics Special Smiles Access to Oral Health Care for Persons with Special Needs American Dental Association 66H-2002 • Resolved, that the Association supports appropriate initiatives and legislation to improve and foster the oral health of persons with special needs, and be it further • Resolved, that the constituent and component dental societies be encouraged to support state and local initiatives and legislation to improve the oral health of persons with special needs, and be it further • Resolved, that dental and allied dental programs be encouraged to educate students about the oral health needs and issues of people with special needs. Grottoes of North America www.scgrotto.com • Humanitarian Foundation – Financial support for dental treatment for children with special needs • Cerebral Palsy • Muscular Dystrophy • Dental Treatment for Organ Transplant Children • Mentally Challenged Grottoes of North America www.scgrotto.com Virginia Chapters ABACA SAMIS Masonic Temple 4028 MacArthur Avenue 803 Princess Anne Sreet Richmond, VA 23227 Fredericksburg, VA (804) 266-4490 email@example.com Action Steps Goal Six Increase Sources of Health Care Services for Adults, Adolescents, and Children with ID, Ensuring that Health Care is Easily Accessible for Them • Special equipment: Ensure that adaptive equipment and assistive technologies are available in urban, rural, and remote communities for use at clinical sites where persons with ID receive health care. • Lifetime health: Ensure continuity of health care services throughout the life of a person with ID. Medically Necessary Dental Care Lack of Access to Comprehensive Dental Services Increased Caries Other Contributing Factors • Physical disabilities • Intellectual disabilities • Increased incidence of malocclusion • Oral defects • Lack of self-cleansing ability Increased Periodontal Disease Other Contributing Factors • Soft diets • Metabolic disturbances • Nutritional deficiencies • Malocclusion • Oral habits • Oral defects General Health Risks Associated With Periodontal Disease • Heart attacks • Coronary heart disease • Stroke • Poor diabetic control • Bacteremia • Endocarditis • Malnutrition • Nosocomial pneumonia General Health Risks Associated With Periodontal Disease • H. Pylori infection • Obesity • Premature/low birth weight infants • Hyperlipidemia Thinking Out of the Box • Infant Oral Health Education Programs • Appropriate Timing for Prevention Appointments • Individuals with ND/ID are Medically Underserved • Appropriate Reimbursement for Necessary Dental Care • Behavior Management Often Requires Additional Time or Non- Routine Clinical Site • Team Approach to Dental Care “It is acknowledged that one of the major unmet health care needs in the United States is adequate dental care for the handicapped.” 1979 National Conf. on Dental Care for the Handicapped “Persons with disabilities need comprehensive dental services and not just lip service.” Fenton SJ, Special Care Dentistry, 1999 2009 ????????????
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