The Health Systems Trust and Inclusive Practices Africa, a research group affiliated to the University of Cape Town (UCT), released the findings of its latest research in the South African Health Review (SAHR) this week, timed to highlight the International Day of Persons with Disability on 3 December.
The theme of this special edition of the publication is "Not all disabilities are visible" and highlights issues around inclusivity for persons with disability. Its launch is well timed, as the theme for the International Day of Persons with Disability is "Disability inclusion in the health system".
The edition also features the work of three UCT contributing editors from the Department of Health and Rehabilitation Sciences: Roshan Galvaan, PhD programme convenor in the Division of Occupational Therapy; Professor Theresa Lorenzo, head of the Department of Health and Rehabilitations Sciences and programme convenor for the Disability Studies programme; and Professor Harsha Kathard of the Division of Communication Sciences and Disorders.
"Our health system has largely been slow to respond to health needs of persons with disabilities, especially those with psychosocial, intellectual and/or communication impairments," said Professor Galvaan.
Even though the Alma-Ata Declaration of 1978 has rehabilitation as one of the key elements of primary healthcare, disability inclusion has remained on the periphery in terms of the building blocks related to financing, human resource planning and leadership to ensure that health services are accessible, available and affordable to all.
A statement from the Health Systems Trust said that while the SAHR recognised the gains made in disability and inclusive healthcare, it also acknowledged that progress in the public health system had been slow and limited.
"The authors note that disability-awareness programmes advocate for the inclusion and full participation of persons with disabilities. They stress the need to develop a participatory approach to disability awareness activities that respect linguistic and cultural diversity, traditions and preference."
However, these tend to be driven by people who are not disabled, the statement said.
"The authors also argue that the implementation of self-advocacy programmes will contribute to dispelling stereotypes of persons with disabilities as passive recipients of welfare and charity programmes."
Other central messages in the SAHR include:
persons with disabilities and COVID-19
intersections between health and education
COVID-19 an X-ray
COVID-19 has deepened the layers of vulnerability and challenges for persons with disabilities and acted as an X-ray to show up the fractures and discontinuities in the health system. The risks were higher for people with disability to contract COVID-19.
The statement said, "While some people benefitted from online services and delivery, this was not accessible to all, especially for those relying on public transport and public sector health services. Gaps were noted in financial assistance, food parcels, clean water and domestic help."
"Everyday activities, such as buying groceries, coupled with dependence on caregivers, guardians, friends and relatives can contribute to increasing mental health needs for persons with disabilities. This with the strain of increased psychological distress burdening the already inadequate health system."
Community based rehabilitation
There is strong motivation for strengthening community-based rehabilitation strategy for inclusive development and extending the idea of rehabilitation beyond individual impairment-related interventions.
"There is a need for a paradigm shift from an overwhelmingly medicalised and individualised approach to disability."
"There is a need for a paradigm shift from an overwhelmingly medicalised and individualised approach to disability," said the statement. "This focuses on fixing impairments, to a rehabilitation service delivery model that acknowledges the critical role of mid-level community rehabilitation workers and community-based peer supporters for persons with disabilities."
Health and education
Systemic barriers also lead to inadequate health, development and academic outcomes for children with disabilities. Collaboration in the health and education sectors is affected by poor coordination and integration at various levels of the system, said the statement.
"And while the South African national departments of Health and Basic Education have both individual as well as coordinated policies to facilitate the participation of children and youth with disability, there is a disjuncture in implementation."
It said more effort and political will are required to make it easier for children and youth with disabilities to transition more seamlessly between these sectors.
In the formal sector, unemployment rates for persons with disabilities are still much higher than those of non-disabled people in South Africa.
The statement said the majority of South Africans with disabilities, and particularly those who are historically disadvantaged, face significant challenges in accessing employment. Poor health also limits employment potential.
Disabling environments contribute to the problem, and these include insufficient reasonable accommodation, so programmes focusing on the integration and retention of employees with disabilities must be strengthened.
Professor Lorenzo said co-editing the special issue of SAHR underscored her commitment to see the community rehabilitation workers, sometimes family members or persons with disabilities themselves, recognised as equal members of the health and rehabilitation team.
"They extend the services to those most in need through advocacy and mobilising resources that enable participation and inclusion of persons with disability. Disabled peoples' organisations also play a critical role as stakeholders in hospital boards and community health committees."
Professor Galvaan said she hoped the special edition would spark discussions, debates and action to "visibilise" disability inclusion for all decision makers.
"These debates, and some critique of us as academics and professionals, are necessary for actioning the Disability Rights slogan 'Nothing about us without us'. Integral to this is systemically addressing the ableist assumptions that discriminate against persons with disabilities within policies and services."
Professor Kathard hoped the edition would consolidate the body of knowledge and implementation practices to give a clearer picture of the gains and challenges in achieving disability inclusion in the health system.
"I am hopeful that this edition of the SAHR will stimulate critical engagement and action of all people, particularly persons with disabilities, as we continue to work towards [a] just society through intersectional disability inclusion.
"It is imperative that we strengthen our community of practice - persons with disabilities, activists, practitioners and service providers and scientists - to formulate a coordinated health strategy that will promote the health and well-being of all people."