“What will happen when I die?” Since beginning my research on the family life of persons with intellectual disabilities through my doctoral study more than a decade ago, I have lost count of the times I have heard this question. It is something that many family caregivers of someone with intellectual disability, mostly mothers or female family members, cannot escape.
Some even wish for their child to die before them because they have no hope that anyone else will be able to take care of their son or daughter as a parent would. As one caregiver in a study conducted in Giyani, Limpopo said: ‘What I pray for day and night is that before I die, God keep me away from death until I bury her. She should pass on before me so that I will be able to bury her; then God may let me die.’
Naturally, no parent would wish to bury their own child. Yet the circumstances surrounding these families, coupled with the lack of options for transitioning care, can lead parents to wish for something seemingly unimaginable. More concerning is that this issue has not been prioritised enough in current disability discourse in South Africa.
These families are wondering and struggling on their own with a heart-wrenching question that no one can answer. For them, the “Beat As One – Rhythm Matters” message emphasised by this year’s Casual Day (observed on September 4) is difficult to realise, as there is no one with whom they can beat this “sombre drum”.
Their anxiety is a symptom of a system that has not adequately planned for the whole life course of persons with intellectual disabilities, making lifelong care largely a family responsibility rather than an issue of public policy.
According to the American Association’s Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSMV), intellectual disabilities, also known as disorders of intellectual development, start during the developmental period and affect how a person learns, communicates, and manages everyday tasks. Most persons with intellectual disabilities require lifelong support, although the nature and level of support vary.
In South Africa, families provide much of this support, especially in under-resourced communities with limited formal services. Families provide emotional support, accommodation, supervision, personal care, transport, advocacy, healthcare coordination and opportunities for social participation. In many instances, they are filling gaps that should be addressed by a broader social support system.
The United Nations Convention on the Rights of Persons with Disabilities (CRPD), which South Africa has signed and ratified, affirms the rights of persons with disabilities to family life and independent living. Article 23 addresses respect for home and the family, while Article 19 recognises the right to live independently and to choose where and with whom one lives.
The CRPD also recognises that families require protection and assistance to enable persons with disabilities to enjoy their rights fully and equally. Yet almost two decades after South Africa ratified it, significant gaps remain in family support and independent-living options, particularly for adults with intellectual disabilities requiring lifelong care.
South Africa’s own policy framework recognises the critical role of families in line with the CRPD. The White Paper on the Rights of Persons with Disabilities, released by the Department of Social Development in 2016, acknowledges that disability affects not only individuals but also their families. Its section on “Building and Supporting Families” recognises the need to support families in fulfilling their role. A decade later, however, families continue to report many of the same gaps.
The draft Policy on Social Development Services to Persons with Disabilities identified the problem of fragmentation and inadequacy of services and the need for disability-specific services across the life course. Generally, options for persons with intellectual disabilities beyond the school-going age are scarce. Even those capable of working often have limited opportunities. This increases the challenges that the families face while taking care of an unemployed adult with intellectual disability who has no opportunities for any other activities in the community.
The support needs of families with aging members with intellectual disabilities are becoming more urgent as this population is living longer due to improvements in healthcare. Services, however, have not adequately responded to this growing need for lifelong care. Options for independent living outside the family home remain scarce in South Africa and are available to only a few. For example, evidence from the Western Cape shows that such services accommodate only 2% of the population of persons with intellectual disabilities.
Research in South Africa has focused disproportionately on children and young people with intellectual disabilities and their families. We need more evidence to better understand the realities of those whose primary caregivers have already died or are aged and/or too frail to continue supporting adults with intellectual disability.
One can only assume that siblings and extended family members are taking over. It cannot be easy for them to assume a role they may have had little preparation for or understanding of. The lack of knowledge and preparation can be detrimental to the health and well-being of the person with intellectual disability and the new caregiver. This gap requires urgent attention.
Lifelong care does not necessarily mean institutionalisation. It means creating a range of options, including family homes with appropriate support, respite care, supported living, group homes, daytime and employment opportunities, community-based services, and high-support residential care where it is genuinely needed. There is a need for targeted policies that align with the CRPD, the South African Constitution and human rights instruments, addressing avenues for lifelong care for persons with intellectual disabilities.
To inform these policies and the needed services, research must seek to understand strategies and resources that enable persons with intellectual disabilities and their families to engage in future care planning. Above all, the aspirations of persons with intellectual disabilities themselves must be prioritised. Many may also be asking the question: “What will happen to me when my parents/caregiver dies?”
*Dr Callista Kahonde is a senior lecturer in the Division of Disability and Rehabilitation Studies at Stellenbosch University.
**The opinions expressed in this article are solely those of the author and do not necessarily reflect the views of the Stellenbosch University or The National Media Group.