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

DoH programmes: prevention of health conditions & impairments in children
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

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

• 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