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Oral Health Disparity Issues


									     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
      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-)
  Understanding Terms
The old term Mental Retardation is
   now referenced in the terms
 intellectual disabilities, learning
    disabilities, developmental
 Whatever term we choose we must
  understand that these children are
susceptible to the same oral problems
          as other children.
Many children with ID/DD have
compounding disabilities or co-
 Children with Special Health Care
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
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
        Conditions (Continued)
•   Genetic and hereditary disorders
•   Cerebral palsy
•   Learning and developmental disabilities
•   Mental retardation (intellectual
    – 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
• Down Syndrome children exhibit a wide
  range of intellectual ability, caution in
  assessing is necessary.
• Motivation
• Cooperation
• Communication
• Depression (Don’t forget emotional
       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
• Medical Pediatric
                            • Transportation
• Dental Professional
  Team                      • School teachers and
• Other Medical
  Specialists               • Community
• Speech and language
• Nursing visitation (for
    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
• 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.
 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
                         • Increased anxiety
  Communication Management

• Know child’s preferred method of
• 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

      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 %

      Percent Children (5-20 Yrs) with Disabilities
                 2005 State Rankings
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
                               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
                                           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
            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
            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
                         Fenton SJ, Special Care Dentistry, 1999

                      Curriculum Hours devoted to Special Care Dentistry




        1992   1993    1994    1995    1996     1997    1998    1999       2000
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,
         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
                       Standard 2-26
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
                  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
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
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
  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
                   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
• Community-based care: Integrate health care services
  for person with ID into diverse community programs.
Special Olympics Special Smiles
           Access to Oral Health Care
           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
• Humanitarian Foundation
  – Financial support for dental treatment for
    children with special needs
     • Cerebral Palsy
     • Muscular Dystrophy
     • Dental Treatment for Organ Transplant
     • Mentally Challenged
      Grottoes of North America
                   Virginia Chapters

ABACA                     SAMIS
Masonic Temple            4028 MacArthur Avenue
803 Princess Anne Sreet   Richmond, VA 23227
Fredericksburg, VA        (804) 266-4490
                   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
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

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