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PURSUING EQUALITY IN THE MIDST OF DISPARITY: HEALTH AND WELL-BEING OF CHILDREN WITH DISABILITIES. DON LOLLAR, Ed.D . GOALS OF THIS PRESENTATION. Include Health Promotion for those living with disabilities as one priority for the conference

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PURSUING EQUALITY IN THE MIDST OF DISPARITY: HEALTH AND WELL-BEING OF CHILDREN WITH DISABILITIES

DON LOLLAR, Ed.D.


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GOALS OF THIS PRESENTATION

  • Include Health Promotion for those living with disabilities as one priority for the conference

  • Define “care” as the responsibility for services and interventions for those living with disabling conditions

  • Highlight disparities

    • Countries with lower vs. higher resources

    • Individuals with vs. those without disabilities

    • Infectious vs. congenital conditions

  • Identify strategies to promote health and prevent secondary conditions in this population


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Points of Departure--1

  • Primary prevention of birth defects and developmental disabilities is a worthy, noble goal

  • These activities should be vigorously pursued

  • Even with intense efforts, and for the foreseeable future, children will continue to be born with problems or develop them early in life, impacted by

    • Poor nutrition

    • Poorly-controlled diseases

    • Conflicts

    • Other environmental factors, such as air quality


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Points of Departure--2

  • Definition of “care”

    • In this discussion, not only “maternal care”

    • Rather, those interventions and strategies and programs that support and encourage the health and well-being of the child/youth/adult with a disability and their family

    • Both uses of the term are important, but need clarification

  • Poverty not only contributes to disability but the presence of a disability contributes to poverty, particularly in low resource countries


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MORTALITY, MORBIDITY, AND DISABILITY—BIRTH DEFECTS OUTCOMES

  • MORTALITY—public health outcome using statistics on deaths

  • MORBIDITY—public health outcome focusing on diseases, traumas, or injury (health conditions-classified by ICD)

  • DISABILITY—public health outcomes related to health conditions that include limitations in personal activities and societal participation (classified by ICF)

    • Chamie, 1995


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MORTALITY OUTCOMES

  • 1995 Infant Mortality

    • 39/1000 Lower resource countries overall

    • 75/1000 Africa

    • 53/1000 Asia

    • 5/1000 North America

  • Each year 585,000 women die from pregnancy related causes—most in lower resource countries

  • 8,000,000 babies die in late pregnancy or during the first 28 days of life—most in lower resource countries from “The Healthy Newborn”

  • At least 1/3 of early-childhood death are associated with congenital disorders (Christianson)


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MORBIDITY OUTCOMES

  • Developmental vulnerability makes children more susceptible to and more affected by illness and environmental influences

  • UNICEF reports the rate of neonatal and postnatal mortality of children under 5 has declined in the previous decade; morbidity has increased (2000)

  • Differences in the provision of health services should not be based on whether the diagnosis is infectious disease or congenital disorder.


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DISABILITY OUTCOMES

  • 85% of children with disabilities live in lower resource countries, and are disproportionately younger

  • “Disability” data often under-represent morbid conditions associated with disability—stunting, wasting, parasitic infections, and “hidden” conditions such as hearing problems


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DISABILITY OUTCOMES

  • Data indicate substantial disparities in services, education, and opportunities

    • South Africa—70% of school-aged children with disabilities are not in school

    • Vietnam—almost 50% of 6-17 years olds with disabilities have either not attended or dropped out of school

    • Central and Eastern Europe—10 million children with disabilities face exclusion from services and opportunities


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United Nations Convention on the Rights of the Child--1989 OUTCOMES

  • Article 23, Children with disabilities

    • CHILDREN SHOULD ENJOY A FULL LIFE

      UNDER CONDITIONS TO ENSURE DIGNITY, SELF RELIANCE, AND PARTICIPATION IN THE LIFE OF THE COMMUNITY

    • THE RIGHT TO SPECIAL CARE AND ASSISTANCE FOR THEMSELVES AND THEIR CAREGIVERS

    • ASSISTANCE WITHOUT COST WITH ACCESS TO EDUCATION, TRAINING, HEALTH CARE, REHABILITATION, AND SERVICES TO ACHIEVE SOCIAL INTEGRATION AND INDIVIDUAL DEVELOPMENT


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INTERVENTIONS OUTCOMES

  • LEVELS OF INTERVENTION—function of scope and intensity of intervention

    • UNIVERSAL EFFORTS/MORTALITY

      prevent mortality, morbidity, disability/promote health and development

    • SELECTED EFFORTS/MORBIDITY

      increased risk for disability due to increased risk, such as poverty or environmental hazards

    • INDICATED EFFORTS/DISABILITY designed for children living with disability

      • Simeonsson, 2003


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UNIVERSAL INTERVENTIONS OUTCOMES

  • Registries provide a foundation from which children with birth problems and families can be monitored

    • Maternal or other risk factors for the problem

    • Tracking the child’s service needs and use and planning treatment and interventions

  • Less than 50% of children are registered at birth (UNICEF, 2001)

  • Female Literacy/Family Planning


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SELECTED INTERVENTIONS OUTCOMES

  • Provide information on risks to targeted groups

  • Develop and implement public health approaches to preventable diseases

  • Identify environmental factors that contribute to vulnerability among populations

  • Improve transportation, especially in rural settings


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INDICATED INTERVENTIONS OUTCOMES

  • INTERVENTIONS IN PRIMARY CARE SETTINGS—

    • 31 Common Congenital Disorders– Christianson

  • SURGERY—14 conditions

  • MEDICATIONS, TRANSFUSIONS--13

  • THERAPIES—PHYSIO, VISUAL, BEHAVIORAL, inc.ADAPTIVE EQUIPMENT- 8

  • COUNSELING—Psychosocial, Diet--3

  • PALLIATIVE CARE—3

  • COMMUNITY BASED REHABILITATION— 13

    • CBR OFTEN INCLUDES THERAPIES AND SUPPORT


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INTERVENTIONS OUTCOMES

  • It is presumptuous to assume resources available in developed countries are always available in low-resource countries—Respect costs nothing and means everything to us all

  • Professional interpersonal support is always possible, regardless of country, culture, religion, gender, ethnicity, or economics

  • Patience is crucial and is a sign of respect

  • More time is often needed for patients to move, communicate, or understand information


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INTERVENTIONS OUTCOMES

  • Children with disabilities are often seen as flawed. Their families are often marginalized. Public messages could address these attitudes and perceptions.

  • Parent education programs should be instituted that include the vulnerability of their children to exploitation—physically, sexually, economically.


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DISABILITY POLICY QUESTIONS OUTCOMES

  • Do families with children with disabilities have the right to keep and raise their children?

    • Are those families marginalized?

  • Is there a national program for the early detection of disabilities?

  • Do children with disabilities have ways (programs, services..) to play with other children in their commuity?


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    DISABILITY POLICY QUESTIONS OUTCOMES

    • Is training on provision of care to children with disabilities available for physicians, both before and after they receive their medical degree?

    • Are training programs for physiotherapy, occupational, speech, mental health professionals available?

    • Has the national health service implemented a strategy of Community-Based Rehabilitation?


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    DISABILITY POLICY QUESTIONS OUTCOMES

    • Are there government-sponsored habilitation and rehabilitation programs in the country?

    • Is there an organization, such as Disabled Persons International, that supports families and may disseminate information and aids?

    • Do architects and engineers have courses on Universal Design to encourage accessible buildings and facilities?


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    DISABILITY POLICY QUESTIONS OUTCOMES

    • Is training on teaching children with disabilities included in the national teacher curriculum?

      • Are children with disabilities attending school?

      • If education is available at special schools, where are they located?

    • Is there a national policy that schools are accessible to children with disabilities?


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    • DON LOLLAR, ED.D. OUTCOMES

    • NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES

    • U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION

      Atlanta, Georgia

      USA

      [email protected]


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