Prevention of disabilty in South African children Pam McLaren Disability Action Research Team (DART) RuDASA 8-10 September 2011

What does disability mean ? Disability … “is complex, dynamic, multidimensionsl and contested” World report on disablity (2011) WHO An umbrella term incorporating impairments, activity limitations and participation restrictions The role of the environment is important in understanding risk factors for disability

What is disability prevention ? The human rights approach shifts focus from child’s limitations resulting from health conditions & impairments to barriers within society that prevent access to basic services, preventing development to fullest potential and enjoyment of rights Two parts to disability prevention: i) prevention of health conditions, impairments, & ii) removal of barriers which exclude children with disabilities from services, facilities and participation in community life

Early identification & intervention of children at risk for disability Multifacited approach & intersectoral strategy needed NGOs, NPOs, civil society, parents, caregivers & children and l ead govt players: DoH - Health, Health promotion & referral to services DSD – Early Childhood Development (ECD), Child Protection, Social Security & funding for NPOs DoE – Early learning (ECD), differentiation of school curriculum, Inclusive Education, School health, School nutrition, Health promotion

Primary prevention: Genetic disorders & birth defects Integrated management of childhood illnesses (IMCI) SA Expanded Programme of Immunisation (SA-EPI) Developmental screening (Road to Health booklet) Malnutrition Foetal Alcohol Sprecturm Disorder (FASD) Secondary prevention: Childhood blindness – 80% avoidable (preventable or treatable) Hearing impairment – infant hearing loss & otitis media School health – screening for vision and hearing impairment Tertiary prevention: Rehabilitation DoH programmes: prevention of health conditions & impairments in children

Identification of barriers experienced by children with disability Most barriers relate to cultural factors & lack of understanding of child disability: Attitudes & behaviours that stigmatise & marginalise CWD Low expectations resulting in lack of learning opportunities Lack of ramps, adapted toilets & inaccessible built environment restrict participation Discriminatory institutional practices result in lack of accessible information e.g for parents & caregivers, blind & Deaf children

Major barriers result from confusion of disability terminology Following concepts are not well understood: Mainstreaming Inclusion Morbidity Barriers to learning Reasonable accomodation Rehabilitation Community-based rehabilitation (CBR)

Risk factors for childhood disability Does this quotation apply to children in SA? “Children under 5 years of age are exposed to multiple risks: poverty, malnutrition, poor health and unstimulating home environments, which can impair cognitive, motor and social-emotional development.” Grantham-McGregor (2007)

Particular risk factors for childhood disability in SA Poverty Maternal factors Malnutrition Micronutrient deficiency Poor delivery of basic services Violence, child injury & child abuse

Examples of risk factors during child’s life cycle Before birth At birth After birth During infancy < 1yr Early childhood 1-5 yrs Birth defects, congenital, environmental, multifacrorial Prematurity, birth complications, infections CNS infections, injuries Infections, high fevers, dehydration, Infections, parasitic, child injury, malnutrition, unclean water, pollution

Re-engineering Primary Health Care (PHC) …. window of opportunity ? District-based model – deployment of 5 specialists / clinicians in all districts (52) to focus on maternal and child mortality (MDG goals 4 & 5) School health programme – inclusion of eye care, vision & hearing screening, dental work, immunisation programmes in schools (later contraceptive health, HIV/AIDS, drug & alcohol abuse will be added) Ward-based PHC model – deployment of 10 well trained PHC workers in each municipal ward in all districts (52)

A way forward – examples of good practice Addressing childhood disability in a context of poverty – Isibindi Model Disability Project Early identification & intervention – HI HOPES Developing a more effective service delivery model – Malumele Onward, CAAC, Interface KZN, Tiny Handz Promoting access to information about disability & services – The.Sponge.Project, Disability Networks & Forums

Conclusion Key messages: The decrease in mortality of children under 1 will increase the prevalence of morbidity of children The increase is numbers of children at risk for disability is a serious public health issue CBR could be used as a strategy to prevent disabilities in children and ensure their rights