Reimagining evidence-based health care for people with intellectual and developmental disabilities in South Africa

Authors: Dr Babalwa Tyabashe-Phume¹, Dr Nomvo Dwadwa-Henda², Prof Lieketseng Ned³ 
 

1. Postdoctoral Researcher, Division of Disability and Rehabilitation Studies, Stellenbosch University, Stellenbosch, South Africa

2. Postdoctoral Researcher, Division of Disability and Rehabilitation Studies, Stellenbosch University, Stellenbosch, South Africa

3. HOD Division of Disability and Rehabilitation Studies, Stellenbosch University, Stellenbosch, South Africa

Introduction

The UN Sustainable Development Goals with theme of “no one left behind” have clear links to the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), which holds governments to account with regard to the rights of people with disabilities. Following South Africa’s ratification of the CRPD in 2007, efforts to include people with disabilities have seen progress, but significant gaps remain. One particular focus that has gained momentum is ensuring equitable health care for people with disabilities, particularly those with intellectual and developmental disabilities (IDD).

The World Health Organization reported that people with intellectual disabilities die at a younger age than the general population, and are less likely to receive critical care. In South Africa, their meaningful inclusion in the health care system has not accelerated and poor understanding of the field of intellectual disability by policymakers and implementers remains. Teaching and training of health care and other service providers is limited, and gaps in legislative reform and funding mechanisms persist. These are some of the issues that have led to the slow translation of policy gains into improved access to health care for people with IDD.

Commissioned by Special Olympics International as part of their Rosemary Collaboratory Initiative entitled “Leveraging Research and Advocacy to Make Health Systems More Inclusive of People with Intellectual Disabilities,” we assessed the inclusion of people with IDD in the South African health care system. The assessment was guided by the Missing Billion Initiative (MBI) health system level framework – a catalyst for disability-inclusive health systems. The rationale for using the MBI framework is its ability to illustrate how systemic factors influence service delivery and health outcomes for people with disabilities.

This blog focuses on what this assessment reveals about the South African health care system and the inclusion of people with IDD in accessing health care. Particularly, we focus on governance, leadership, health financing and data, and evidence to highlight the critical challenges, lessons learned, and the path forward to an inclusive health care system for people with IDD.

Governance: A work in progress

South Africa's commitment to disability inclusion is reflected in various policy documents which are linked to the CRPD, including the White Paper on the Rights of Persons with Disabilities (WPRPD) and the National Health Act. These documents emphasize the need for disability-inclusive health care and rehabilitation. The National Health Act also mentions that anyone who wishes to provide residential care, treatment, and rehabilitation to people with profound and severe IDD should obtain a license from the Ministry of Health. Yet, the reality tells a different story. 

One major issue is the lack of specific, measurable actions for people with IDD. For instance, the National Strategic Plan for HIV, TB, and STIs (2017–2022) includes people with disabilities as a priority group. However, it falls short on detailing how this prioritization should be enacted in service provision for people with IDD. While the National Mental Health Policy Framework and Strategic Plan (2023–2030) mentions people with IDD, it provides no clear guidance on how services should be adapted for their specific needs. Additionally, there is no independent law for people with IDD and no national IDD clinical care standards. 

A key governance challenge reflects a lack of coordination across the ministries. For example, while numerous government departments (such as Health, Social Development, and Basic Education) are involved in disability matters, they often fail to collaborate effectively. The National Planning Commission notes that existing partnerships remain ineffective.

Health financing

South Africa does not have a dedicated national budget for disability inclusion. However, while inadequate, there are budgets for assistive devices through the Ministry of Health. Moroever, there are designated funds for Basic Education from Treasury to roll out the inclusion of learners with severe and profound intellectual disabilities  in educational opportunities in response to the Constitutional Court ruling of 2010. The Western Cape has a policy framework which facilitates transfer payments to learners in special care centers and adults in group homes. 

Lessons learned: Bridging the gaps

1. Data and evidence gaps

South Africa collects disability-related data through the Washington Group on Disability Statistics in its population household surveys, but these datasets lack the granularity required to accurately reflect the needs of people with IDD. There is no specific disaggregation of data for people with IDD, limiting the government's ability to tailor services or plan policies and budgeting effectively. For example, data collected in national surveys such as the Demographic and Health Survey and CENSUS do not distinguish people with IDD from those with other disabilities. Concerns and questions around the accuracy  of the general Census have also been raised.

2. Leadership

There is no specific focal point in the Ministry of Health responsible for ensuring access of people with IDD. Moreover, there is no formal representation of people with IDD in the national health sector, nor is there any formal representation in national taskforces. 

3. Advocacy and involvement

Advocacy groups and Disabled Peoples’ Organizations play a crucial role in holding the government accountable. Yet, there is still a lack of formal representation of people with IDD in key policy-making structures. In contrast, other disability groups have seen more success in securing their involvement in governmental decision-making. The creation of a permanent advisory committee on disability could ensure that people with IDD are better represented in health care policies and planning.

What needs to change?

To truly reimagine evidence-based health care for people with disabilities, especially IDD, several key changes are needed:

• Develop national IDD-specific policies: South Africa’s health care system must create specific, detailed policies for people with IDD, separate from the general category of mental health. This should include the development of clinical care standards for IDD to ensure that these individuals receive timely and appropriate health care.
• Establish a cross-ministry structure: A cross-ministry task force dedicated to disability inclusion in health care would help ensure coordinated action across sectors. This structure should have clear roles for each ministry, monitored by a central body such as the Ministry of Health, with involvement from the Ministry of Social Development, the Ministry of Basic Education, and other relevant bodies.
• Expand data collection efforts: South Africa needs to enhance its national disability data collection systems to include specific data on people with IDD. This will allow for more effective planning, resource allocation, and monitoring. By disaggregating data on IDD, the government can better understand the health needs and challenges faced by this population.
• Increase budget allocation for disability services: A dedicated budget for disability inclusion, especially for services targeting people with IDD, is crucial. Without clear financial support, policies will continue to fall short in practice. Furthermore, the government must consider including disability-specific services within the National Health Insurance framework to ensure that health care services are accessible to all. 
• Engage stakeholders early: Involve people with disabilities, policymakers, and advocacy groups early in health care planning. Their input will help ensure that health care strategies accurately reflect the needs of people with IDD.

Taking action beyond health

The inclusion of people with disabilities, particularly those with IDD, in the health care system requires more than just policy frameworks—it demands action. By improving data collection, coordinating cross-ministry efforts, and dedicating appropriate budgets, South Africa can take meaningful steps toward creating an inclusive and equitable health care system. The 2024 World EBHC Day Campaign reminds us that evidence-based health care should go beyond addressing clinical outcomes. It must prioritize the experiences of vulnerable populations and ensure that health care systems are responsive to their needs. For South Africa, reimagining evidence-based health care for people with IDD is not only a necessity—it is an opportunity to lead the way in disability-inclusive global health efforts.

To close the gaps in health care access for people with IDD, these actions must be prioritized. South Africa can improve health care equity for people with IDD, ensuring that their needs are met and their rights to quality health care are upheld.

References

National Development Plan 2030. https://www.gov.za/sites/default/files/gcis_document/201409/ndp-2030-our-future-make-it-workr.pdf

National Health Act (61 of 2003). https://www.gov.za/sites/default/files/gcis_document/201409/a61-03.pdf

National Health Insurance Bill. (2023). https://www.health.gov.za/wp-content/uploads/2023/07/NHI-Bill-2023.pdf

National Mental health Policy Framework and Strategic Plan (15 August 2023). https://www.health.gov.za/wp-content/uploads/2023/08/National-Mental-Health-Policy-framework-and-strategic-Plan-for-Web-15%EF%80%A208%EF%80%A223-2.pdf

National Strategic Plan for HIV, TB and STIs 2023 – 2028. https://knowledgehub.health.gov.za/elibrary/national-strategic-plan-hiv-tb-and-stis-2023-2028#:~:text=The%20emphasis%20in%20the%20NSP,STI%20prevention%20and%20treatment%20services.

White Paper on the Rights of Persons with Disabilities. http://ilifalabantwana.co.za/wp-content/uploads/2016/07/Framework-25-may_1_3.docx

UNCRPD (2006) - signed 2007 March; Ratified Nov 2007, Standard Rules for the equalization of opportunity for Persons with Disability. https://www.ohchr.org/en/instruments-mechanisms/instruments/standard-rules-equalization-opportunities-persons-disabilities

To link to this article - DOI: https://doi.org/10.70253/QNND4428

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