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

1. PURSUING EQUALITY IN THE MIDST OF DISPARITY: HEALTH AND WELL-BEING OF CHILDREN WITH DISABILITIES DON LOLLAR, Ed.D.

2. 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

3. 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

4. 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

5. 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

6. 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)

7. 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.

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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.

17. 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?

18. 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?

19. 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?

20. 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?

21. 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