Prioritise inclusive healthcare for people with disabilities

Commonly defined as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”, people with disabilities are often failed by health systems, resulting in poorer health outcomes. 

Statistics South Africa estimated that people with disabilities comprise 7.7% of the country’s population, although this excludes children under five years old, people living in institutions, and people living with mental illness, making this a significant underestimation of actual prevalence. This number will continue to increase as the population grows and ages.

Essentially, disability arises from an interaction of an impairment and environmental, societal, or personal barriers. People with disabilities report barriers to accessing healthcare such as inaccessible health facilities and negative attitudes of providers. They are also excluded from many healthcare services, with disability-related health services (such as rehabilitation and assistive technology) often reported as inadequate or poor. 

All of this prompts a need for improvement in the health system to ensure that all people have access to the full range of quality health services they need to lead healthy lives. This is something that we should also keep in mind as we celebrate Casual Day on Saturday 6 September to create awareness of persons with disabilities.

It is possible to make health systems disability inclusive. However, South Africa currently has no comprehensive tool to assess how inclusive the healthcare system is for people with disabilities. Our project is aimed at contributing to this gap.

We are part of a Special Olympics International (SOI) Rosemary Collaboratory Initiative entitled “Leveraging Research and Advocacy to Make Health Systems More Inclusive of People with Intellectual Disabilities”. SOI partnered with the Missing Billion Initiative to adapt an existing MBI system-level framework which describes the components required to create a disability-inclusive health system. The original framework is targeted at making health systems inclusive to all people with disabilities. 

The outcome of this partnership was an Intellectual and Developmental disabilities (IDD) specific module. This IDD-focused tool is being piloted in eight countries and three states in the United States. The findings of these assessments will appear in a global report on the health of persons with intellectual and developmental disabilities (PWIDD) that Special Olympics plans to launch in 2025.

Serving as consultants for South Africa, we are using the tool to assess the inclusion of persons with IDD in the country’s healthcare system. The significance of the missing billion framework is its ability to illustrate how systemic factors influence service delivery and produce outputs and outcomes relevant to people with disabilities. The tool has four system-level components and five service delivery components (two on the demand side, and three on the supply side) (Fig. 1). It is assumed that improving performance with respect to disability inclusion in these nine components will improve the output of this system, that is, effective service coverage and thus lead to improved health outcomes (health status) of people with disabilities.

Figure 1: The Missing Billion Health System Framework

The preliminary findings of our desktop review and policy analysis in accordance with the MBI framework system indicators show the following:

In terms of governance, South Africa has been hailed for its policies which are aligned to the international laws and the Constitution. For example, South Africa signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2007. However, the last country progress report of the UN convention was published in 2014. South Africa has legislation protecting the right to health for people with disabilities in general, without any specific reference to PWIDD. There is also no independent law specifically for them. They  are referenced as a priority group in the National Mental Health Policy Framework and Strategic Plan 2023-2030 (department of health, 2023). There is no independent policy for IDD in the country. 

In health policy plans, the National Policy Framework and Strategy on Palliative Care 2017-2022 makes considerations that healthcare facilities and services must prioritise PWIDD and ensure that reasonable accommodation is provided. Several national disease plans speak about making services accessible to people with disability, without specifically mentioning IDD, and fall short on how this inclusion will be implemented.

It remains unclear how PWIDD are represented under the ministry of health leadership. There are no dedicated health sector structures for IDD and often IDD needs are grouped under mental health action plans. We found no evidence of formal representation of PWIDD or their caregivers in the national taskforces.

Health financing in South Africa takes place through a two-tiered health system divided along socioeconomic lines, resulting in inequitable access to healthcare (department of health, 2019). Health services are mostly provided through the tax-funded public sector that caters for about 84% of the population, while the private sector caters for about 16% of the population through medical aid schemes. But, there is no dedicated budget allocated for disability inclusion. 

The 2023 evaluation report of the white paper on the rights of people with disabilities highlights that budgeting for the disability sector is currently fragmented with different departments funding specific projects relevant to them. Some best practices exist though. For example, basic primary healthcare services are free at clinics for all public healthcare users and charged on a means-tested sliding scale at higher levels of care. People who receive disability grants are entitled to free healthcare at hospitals as well (department of social development, 2016). The South African Revenue Service allows for declaration of disability which allows for reclaiming of tax on disability-related purchases.

On Data and evidence, South Africa has a number of data sources collecting national data that include the World Health Organization Disability Assessment Schedule, the Washington Group on Disability Statistics short set (WGSS) for disability data, Stats SA’s Census, the National Health and Nutrition Examination Survey, and the Demographic and Health Survey. While our preliminary findings show that some representation of disability data is considered nationally (as in all of the abovementioned datasets) and the data collection methods use validated and internationally recognised tools (such as the WGSS), they do not actually measure IDD. 

The used WGSS questions ask about a range of domains of functioning and do not collect specific disorder information and are therefore not able to specifically identify PWIDD, thus prohibiting disaggregation of data by IDD status. For this reason, we conclude that there is a paucity of data on IDD-related information in the country. We could not identify national data for the output indicators on service coverage and outcomes of health status because of the lack of disaggregation by IDD in the national data sets. 

We call on the government of national unity to collaborate and partner with us on this endeavour as this assessment can help prioritise activities by policymakers, including the department of health as well as the department of women, youth and persons with disabilities. The study will also provide many opportunities for the development of disability inclusion in the country within structures, programmes and monitoring and evaluation, and make healthcare inclusive for people with disabilities. There are opportunities to link with current efforts to implement the pillars of the White Paper on the Rights of People with Disabilities as well as harmonise disability reporting.

Professor Lieketseng Ned, Dr Nomvo Dwadwa-Henda and Dr Babalwa Tyabashe-Phume are affiliated with the Division of Disability and Rehabilitation Studies at Stellenbosch University.