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An Olympian Task: Universal Access to Preventive and Comprehensive Dental Services for Children with

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Title: An Olympian Task: Universal Access to Preventive and Comprehensive Dental Services for Children with


1
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

2
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 Generals
    Conference on Health Disparities and Mental
    Retardation, February 2002

3
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.)

4
Vulnerable Patient Populations
  • Underemployment and non-employment - lack of
    private medical/dental benefits
  • Structure of public dental care financing (MM)
  • De-institutionalization to community-based (non-)
    system

5
Understanding Terms
  • The old term Mental Retardation is now
    referenced in the terms intellectual
    disabilities, learning disabilities,
    developmental disabilities.

6
Understanding
  • Whatever term we choose we must understand that
    these children are susceptible to the same oral
    problems as other children.

7
Understanding
  • Many children with ID/DD have compounding
    disabilities or co-morbidity.

8
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.

9
18 of US children and adolescents ages 18
and under have a chronic condition or disability
10
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

11
Conditions (Continued)
  • Genetic and hereditary disorders
  • Cerebral palsy
  • Learning and developmental disabilities
  • Mental retardation (intellectual disabilities)
  • Down syndrome and other causes

12
Children with Intellectual Developmental
Disabilities
  • Population represents about 3
  • Worldwide about 170,000,000
  • US prevalence is about 3 in 100 births.

13
Risk Factors/ Prenatal
  • Cerebral malformation ( microcephaly )
  • Chromosomal (Down Syndrome)
  • Genetic
  • Infection
  • Alcoholism (FAS)
  • Pregnancy toxemia
  • Diabetes Mellitus
  • Prenatal malnutrition

14
Postnatal Risk Factors
  • Trauma
  • Meningitis
  • Encephalitis
  • Lead poisoning
  • Missed diagnosis pseudo e.g. CP, visual and
    hearing impairment, ADD, Learning disorders,
    autism.

15
Mental Retardation
  • Mild 50-70 IQ
  • Moderate 30-50 IQ
  • Severe to profound lt 30 IQ

16
Down Syndrome
  • Estimated at 1 in 700 births
  • Medical co-morbidity
  • Congenital heart disease
  • Atlanto-axial instability
  • Leukemia
  • immunodeficiency
  • obesity
  • osteoporosis (female)
  • premature aging

17
Down Syndrome Oral Factors
  • Jaw abnormalities
  • Malocclusion
  • Poor mastication
  • Macroglossia
  • Salivation
  • Tooth anomalies/shape and number
  • Mouth breathing and poor lip posture

18
Down Syndrome /Behavior Factors
  • Down Syndrome children exhibit a wide range of
    intellectual ability, caution in assessing is
    necessary.
  • Motivation
  • Cooperation
  • Communication
  • Depression (Dont forget emotional problems)

19
Barriers to Oral Health
  • User/Caregiver Barriers
  • Provider Barriers
  • Societal Barriers

20
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

21
User/Caregiver Barriers
  • Parental/caregiver awareness
  • Reluctance to seek or accept care
  • Knowledge and skill in support staff, parent care
    providers.
  • Low expectations

22
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.

23
Societal Barriers
  • Access
  • Poor system for health care reimbursement
  • Attitudes
  • Low expectations

24
Oral HealthCare / Management Pre-school and
School age
  • Integrated care
  • Early initial dental visit
  • Regular dental appointments

25
Integrated Care Partners
  • Parent
  • Social Services
  • Medical Pediatric
  • Dental Professional Team
  • Other Medical Specialists
  • Speech and language
  • Nursing visitation (for developmental monitor)
  • Occupational Therapist
  • Transportation
  • School teachers and staff.
  • Community organizations

26
Oral Health Care/ Prevention
  • Diet Monitoring
  • Fluoride use
  • Parent/caregiver education
  • Sealant
  • Other Health Professional Education
  • Nursing
  • Medical
  • Educators
  • Therapists

27
Oral Health Care and Treatment Strategies
  • Friendly and supportive dental team
  • Continuity of providers is necessary
  • Allow time for acclimatization to dental
    environment
  • Time to explain each step
  • Awareness of disability by dental team
  • Dental operatory adaptation
  • All patients deserve and are entitled to full
    service and care.

28
Communication Considerations
  • Hearing and Vision impairment
  • Attention span
  • Poor auditory memory
  • Process and response time
  • Verbal cognition
  • Limited expressive vocabulary
  • Motor deficits including weak or uncoordinated
    oral musculature.
  • Increased anxiety

29
Communication Management
  • Know childs preferred method of communicating
  • Signing is very helpful
  • Slow , clear and calm
  • Language is appropriate
  • Patience- allow time for response.

30
Treatment Planning
  • Medical History
  • Level of MR
  • Cooperation Level
  • Mobility
  • Dexterity
  • Oral Hygiene (what works and what doesnt)
  • Communication and motivation
  • Dental findings
  • Dental Expectations (realistic, compassionate,
    expedient, definitive, treatment that can be
    maintained.)
  • Family support
  • Economic constraints
  • Settings for care
  • Inpatient/outpatient
  • Prognosis

31
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?

32
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

33
National Survey of CSHCN Chartbook 2001Percent
of Children with SHCN
  • Total Child Prevalence 0-5 yrs 6-11yrs
    12-17 yrs
  • National 12.8 7.8 14.6 15.8
  • West Virginia 16.7 9.0 20.7 19.8
  • Kentucky 15.7 11.2 17.7 17.8
  • Virginia 15.3 9.0 16.7 17.1
  • Maryland 15.2 9.2 17.9 18.2
  • North Carolina 14.0 8.1 16.7
    17.1
  • Tennessee 14.0 9.2 15.8 16.9
  • Delaware 13.5 9.5 17.7 18.5
  • New Jersey 12.6 7.9 14.6 15.0
  • www.cdc.gov/nchs/about
    /major/slaits/cshcn.htm

34
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35
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36
Percent Children (5-20 Yrs) with
Disabilities2005 State Rankingshttp//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

37
Disability Status Profile For VirginiaNoninstitut
ionalized Children Ages 5-15www.kidscount.org/cen
sus/
  • 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

38
Disability Status Profile For VirginiaNoninstitut
ionalized Children Ages 5-15www.kidscount.org/cen
sus/
  • 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)

39
Inadequate Access to Dental Care The Evidence
  • Yale Literature review (SOI, 2001)
  • Surgeon Generals Report - Oral Health in America
    (2000)
  • Surgeon Generals Report on Health Disparities
    and Mental Retardation (2002)
  • Special Olympics Special Smiles Data
  • National Goals Conference for MR (2003)

40
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 MDs in primary care
    practices

41
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.

42
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.

43
Closing the GapA National Blueprint to
Improve the Health of Persons with Mental
RetardationReport of the Surgeon Generals
Conferenceon Health Disparities and Mental
RetardationU.S. Department of Health and Human
ServicesFebruary 2002
44
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.

45
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

46
Dental School Curriculum TrendsFenton SJ,
Special Care Dentistry, 1999
47
Dental School Curriculum Trends
  • Almost 2/3 of dental students (3rd 4th year)
    reported having never treated a person with MR
  • 82 reported lt 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

48
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

49
Commission on Dental AccreditationPredoctoral
Dental EducationStandard 2-26Effective Date
January 1, 2006
  • Graduates must be competent in assessing
  • the treatment needs of patients with special
  • needs.

50
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.

51
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 individuals lifespan.

52
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

53
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)

54
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.

55
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

56
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.

57
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.

58
Special Olympics Special Smiles
59
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.

60
Grottoes of North Americawww.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

61
Grottoes of North Americawww.scgrotto.com
  • Virginia Chapters
  • ABACA SAMIS
  • Masonic Temple 4028 MacArthur Avenue
  • 803 Princess Anne Sreet Richmond, VA 23227
  • Fredericksburg, VA (804) 266-4490
  • abacagrotto_at_comcast.com

62
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.

63
Medically Necessary Dental Care
64
Lack of Access to Comprehensive Dental Services
65
Increased CariesOther Contributing Factors
  • Physical disabilities
  • Intellectual disabilities
  • Increased incidence of malocclusion
  • Oral defects
  • Lack of self-cleansing ability

66
Increased Periodontal DiseaseOther Contributing
Factors
  • Soft diets
  • Metabolic disturbances
  • Nutritional deficiencies
  • Malocclusion
  • Oral habits
  • Oral defects

67
General Health Risks Associated With Periodontal
Disease
  • Heart attacks
  • Coronary heart disease
  • Stroke
  • Poor diabetic control
  • Bacteremia
  • Endocarditis
  • Malnutrition
  • Nosocomial pneumonia

68
General Health Risks Associated With Periodontal
Disease
  • H. Pylori infection
  • Obesity
  • Premature/low birth weight infants
  • Hyperlipidemia

69
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

70
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
HandicappedPersons with disabilities need
comprehensive dental services and not just lip
service.Fenton SJ, Special Care Dentistry,
1999
71
2009 ????????????
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