PURSUING EQUALITY IN THE MIDST

OF DISPARITY:
HEALTH AND WELL-BEING OF
CHILDREN WITH DISABILITIES

DON LOLLAR, Ed.D.

Centers for Disease Control and Prevention

National Center on Birth Defects

and Developmental Disabilities

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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
 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

 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
 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

 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
 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

 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

 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

 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
 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

 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

 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

 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

 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

 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
– 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.

 NATIONAL CENTER ON BIRTH DEFECTS AND

DEVELOPMENTAL DISABILITIES
 U.S. CENTERS FOR DISEASE CONTROL AND
PREVENTION
Atlanta, Georgia
USA
dlollar@cdc.gov

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