Intellectual disability in South Africa: the possibilities and limits of democratic rights

Abstract

Purpose The purpose of this paper is to present an overview of the history, current status and possible future directions for intellectual disability (ID) policy and practice in South Africa (SA). Design/methodology/approach The paper was developed by academics and practitioners in the field of ID in SA. A review of the literature, accompanied by a joint writing and discussion process was carried out to identify critical issues in the development of ID services, specifically facing the challenge of moving from racially based provision towards equitable services for all citizens with ID. Findings Progressive policy has replaced practices of scientific racism which were previously used to support the establishment of white supremacism. This positive move is still in process and has not resulted in the immediate establishment of human rights. A vibrant civil society is engaging with this task currently. Research limitations/implications The findings point to the need for a human rights approach that takes into account the postcolonial context of SA. Practical implications There is a need for continued advocacy that is inclusive of people with ID and their families. Social implications Continuing engagement between government and civil society is recommended to ensure the achievement of human rights for citizens with ID. Originality/value This paper is of value to ID researchers and practitioners from the global South as it describes a non-western context that might have resonance with other low and middle income countries.

The support needs of families raising children with intellectual disability

“…Despite the social model of disability by South African legislation to protect the rights of persons living with ID, children with ID continue to be neglected by societies and the institutions under their care. Although the government developed policies for regulation of educational institutions, including schools and day-care centres, to cater for children with ID, the educators’ role to meet the learning needs is still not aligned with the constitution of the country on educational rights of these children (McKenzie et al 2019 ). In addition, the study of Duma et al ( 2021 ) found the need to upskill the teachers on ID to enhance the care of the children with ID and support of their families.…”

“…The current statistical information on disability relied on the national census. Although foetal alcohol spectrum disorder was found to be the most common cause of ID in South Africa, other factors such as malnutrition, infectious diseases and injuries also contributed to high ID incidences (McKenzie et al 2019 ). Deficient statistical information compounds the situation when children continue to be hidden by their families and cannot access any services envisioned in the Integrated National Strategy on Support Services to Children with Disability (INSSSCD) (DoSD 2009 ).…”

Families’ Experiences on Safety Needs of Children with Intellectual Disability

“…Such a lack of reporting and passive response to such cases provided families with evidence that their children were not safe in these facilities. Regardless of the constitutional rights, educational policies for educators in South Africa are not yet adequately aligned to the protection of the rights of children with ID at schools [ 13 ] to make such institutions a safe place. Hence, in this study, some families opted for their children to stay at home, not attending school or day care centres, and risked a bleak future without education for them to be safe, rather than endure ill-treatment and bullying at schools.…”

“…In South Africa, the increase in ID’s prevalence is not clearly indicated due to the lack of accurate epidemiological data [ 12 , 13 ]. Notwithstanding, the country is implementing various regulatory mechanisms and institutional/organisational involvement to ensure protection, safety, and security of persons with intellectual and physical disabilities.…”

“…Studies have shown that children living with ID continue to experience social stigma and discrimination, which compromise their basic human right to safety and security [ 13 ], compared to their peers without ID. Currently, there are few studies on the safety of children with ID.…”