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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.

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.

Current measurement landscape

Disability measurement in South Africa rests on two main pillars.

The first is administrative records. These include:

the South African Social Security Agency’s medical assessments for disability grants

the Department of Basic Education’s records of learners with special needs

the South African Revenue Service’s Disability Tax Rebate system (which also requires a medical diagnosis and assessment)

the Department of Health healthcare registers.

These all provide useful service-level insights. But they only capture people already in contact with services. And they use different coding standards.

The second pillar is population-based surveys. These include Washington Group questions on disability. This generates internationally comparable prevalence estimates. But this measurement doesn’t include children under 5 years. The nature of the questions also means that a wide range of predominantly invisible disabilities are missed.

For children, the Washington Group/Unicef Child Functioning Module is internationally recognised as a valid measure for 2–17 year olds. It is available and recommended. But it’s still not widely implemented in South Africa.

As a result, the current system remains inadequate in reliably disaggregating data by disability type, age, severity or onset.

Measurement limitations

Population-based measures of functioning don’t provide a diagnosis. It is therefore difficult to identify people with intellectual and developmental disability within the data.

Additionally, the Washington Group does not ask about psychosocial functioning. An example of such a question could be: Do you have difficulty forming relationships?. Relying on it alone may undercount many people whose primary impairments are cognitive, adaptive or psychosocial.

Ideally, it would be beneficial to have both the diagnosis and the functional profile.

National reporting also leaves an important early-childhood blind spot. Infants and many toddlers (0–4 years) are not captured in the same way as older children and adults. Yet this is the period when early detection and intervention can have the most impact. The Washington Group/Unicef measure improves data for children from 2 to 4 years. But it isn’t embedded in the country’s data collection platforms.

Data on young children are further limited by uneven developmental surveillance and the narrow use of the Road to Health Booklet. The booklet serves as a comprehensive record of a child’s medical history, health status, growth and development.

Administrative records are also inconsistently coded and weakly linked. This makes them an unreliable source of data on type of disability. Single-item indicators (for example, “difficulty communicating”) risk misclassification unless analysed alongside onset and other related functioning.

What is possible?

The question that we asked in our recently completed country assessment in collaboration with Special Olympics South Africa is:

how does one use data on the functioning profile to understand diagnosis and vice versa?

Such a crosswalk would allow identification of people with intellectual and developmental disabilities in the data. As an initial step, we created and used a composite indicator. This could potentially assist in identifying people 5 years and older.

For each dataset, we used a combination of the already existing Washington Group Short Set variables to create the new “With intellectual and developmental disabilities” variable.

This was followed by running cross-tabulations of the “with possible intellectual and developmental disabilities” versus “without intellectual and developmental disabilities” with a number of other health-related variables. These cross-tabulations were used to identify gaps in accessing health care services.

We acknowledge that this is an imperfect measure. But it provides a starting point to try and understand the trends in access to health care.

Next steps

We recommend the following:

Amend survey instruments to include the Washington Group alongside diagnosis questions for those under five.

Do research to understand the functional profile of people with people with intellectual and developmental disabilities based on their responses to the Washington Group Short Set.

Expand training for field staff on the new modules. This should include interviewing techniques.

Ensure national and subnational coordination.

Publish detailed breakdowns by disability type, by age group (including under 5) , and by region.

The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.