1. TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities PURSUING EQUALITY IN THE MIDST OF DISPARITY: HEALTH AND WELL-BEING OF CHILDREN WITH DISABILITIES DON LOLLAR, Ed.D.

2. TM 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. TM 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. TM  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 Points of Departure--2

5. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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. TM 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