Disability planning in South Africa starts with better data

THE effective planning and delivery of services for people with intellectual and developmental disabilities in South Africa is severely constrained by the lack of reliable data.

- LIEKETSENG NED & MARGUERITE SCHNEIDER

IDEALLY, it would be beneficial to have both the diagnosis and the functional profile in the population data, say the writers.

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Intellectual disability is characterised by significant limitations in: · intellectual functioning (reasoning, learning, problem solving) · adaptive behaviour (a range of everyday social and practical skills) which originate before the age of 22. Developmental disabilities are a diverse group of chronic conditions due to an impairment in physical, learning, language, or behaviour areas. Intellectual disability, autism, cerebral palsy, Down syndrome and fetal alcohol syndrome are some of the conditions. South Africa measures disability at population level using the Washington Group Short Set of six functional questions. This ensures international comparability. But it doesn't adequately capture intellectual and development disabilities. This is because the questions only capture difficulties in doing basic activities. They don't capture a diagnosis. It's therefore difficult to know what diagnoses have led people to report difficulties.

This makes disaggregation by disability diagnosis difficult. Data disaggregation by disability types is key. It contributes to effective policy, resource allocation and budgeting as well as appropriate intervention and targeted services. This article builds on our work researching disability in South Africa for over 10 years. In it, we propose pragmatic steps to improve the ability to monitor the status of people with intellectual and developmental disabilities of all ages. South Africa can add to the evidence base by producing robust, actionable metrics that strengthen population data. In turn this will enhance planning and implementation.

Disability measurement in South Africa rests on two main pillars. The first is administrative records. These include: