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Society needs to acknowledge the centrality of the lifelong relationship between the family caregiver and the person with intellectual disability and its impact on the lives of both, writes Callista Kahonde.
Celebrated annually on the first Friday in September, Casual Day (2 September) is about supporting persons with disabilities. On this day, South Africans are called upon to donate to campaigns and initiatives that support and afford human rights to persons with disabilities.
As someone who has been doing research on issues impacting the lives of persons with intellectual disabilities for the last 10 years, I would like to reflect in this article on a topic we rarely speak about, namely the lifelong caring responsibility of their family caregivers. In my work, I have found that this matter is indispensable for most persons with intellectual disabilities to realise their rights, thrive in their communities or even survive in some instances. Looking at this year's Casual Day theme #ICelebrate SA, I see it fitting to advocate for the celebration and recognition of these critical role players in the lives of persons with intellectual disabilities.
Intellectual disability affects a person's mental abilities, such as reasoning, problem-solving, abstract thinking, judgment, academic learning, among others. The affected person's adaptive functioning is impaired, which makes it difficult for them to meet standards of personal independence and social responsibility in one or more aspects of daily life. The deficits in intellectual and adaptive functioning should start during the developmental stage (before the age of 18) for a person to be classified as someone with an intellectual disability.
The severity of intellectual disability occurs across a range of levels from mild to moderate intellectual disability to severe and profound intellectual disability. The levels are classified according to individual support required for that person with an intellectual disability to achieve optimum functioning. In South Africa, the lifelong responsibility to care for and support a person with intellectual disability falls on the family, usually with minimum to no external support or respite.
Often there are no opportunities for out-of-home residential services, and when these services are available, most families can’t afford them. Although parents, especially mothers, are generally the primary caregivers, grandparents, aunts, and uncles can also be involved. As parents age and die, siblings usually take over this responsibility.
Role of family caregivers unacknowledged
My research on issues affecting the lives of persons with intellectual disabilities in the country has highlighted the experiences and struggles of family caregivers. This important aspect is rarely highlighted in the academic literature in South Africa and the African continent at large. There is evidence of disjuncture between what the families experience within their homes where they live with their child or relative with intellectual disability and the human rights informed policies that guide services.
The central role of the inextricable, lifelong relationships that persons with intellectual disabilities have with their family caregivers is not given enough priority in policies, research, and practice in South Africa. The country has progressive human rights policies and frameworks advancing the rights of persons with disabilities. These are grounded within the White Paper on the Rights of Persons with Disabilities, which incorporates provisions of the main international disability treaty, the United Nations Convention on the Rights of Persons with Disabilities. However, these policies focus more on the rights of the person with disabilities. They should also prioritise the rights and needs of family caregivers who must provide lifelong care and support to persons with intellectual disability. Failure to acknowledge and address the need for this balance will result in family caregivers deciding what they think is best for the person with intellectual disability within their immediate family circumstances. This was apparent in my research with families of young adults with intellectual disabilities in the Western Cape Province, South Africa.
In a recent article, I pointed out that family caregivers fear that their child or relative with intellectual disability could be sexually abused. In the absence of appropriate support for both the caregiver and the person with intellectual disability, the former must constantly conduct protective surveillance. In some instances, this denies the person with intellectual disability opportunities for education and training, employment, leisure, and other forms of social life.
This can also apply to other areas of the person with intellectual disability’s life. For example, a recent study in Cape Town found that some caregivers stopped taking their relative with intellectual disability to receive biomedical health services because of the challenges of using public transport, and they also feared that their relative would be taken advantage of if exposed to the outside world. They preferred keeping them at home.
At first glance, one might conclude that the families are simply overprotective, restrictive, and even violating the rights of the person with intellectual disability under their care. However, the scenario is more complex and needs to be analysed with a lens that considers the material, emotional and practical support needs of both the caregiver and the person being cared for.
Supporting family caregivers
So, how can family caregivers be supported as they care for and support persons with intellectual disabilities?
In my doctoral study, I recommended that we complement the current human rights approach to disability with a relational lens. This does not only apply to caregivers of persons with intellectual disabilities, but also those caring for persons with different types of disabilities who need long-term care from family caregivers. What we need, is an ethics of care approach.
Firstly, society needs to acknowledge the centrality of the lifelong relationship between the family caregiver and the person with intellectual disability and its impact on the lives of both. Secondly, society must recognise and seek to understand how family caregivers view their responsibilities towards the person with intellectual disability within this lifelong relationship.
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Here they could be asked questions about what they see as their responsibility, where they draw the boundaries within the care relationship so that their care does not become paternalistic, and the extent to which relevant human rights policies and initiatives influence their caring responsibilities. Seeking answers to these questions can help policymakers and service providers, and society at large gain a better understanding of the areas that need to be addressed so that the optimum support can be offered to both the person with intellectual disability and the caregiver.
Thirdly, it is important to realise that the relationship between the family caregiver and the person with intellectual disability and the dynamics of the care given and received depend on the context. This means that the family's structure, culture, beliefs, socio-economic status, history, and neighbourhood, among others, have an impact on the day-to-day care and support that the caregiver can give to the person with intellectual disability. Although some family caregivers of children receive the care dependency grant, there are many other non-financial, practical and emotional needs.
Lastly, for a person with intellectual disability whose life depends on the support of the family, focusing only on "public rights" like education, social security, health, housing and employment is simply inadequate. We must bridge the gap between the private, which is their domestic life, and their public life. That way, the struggles, and experiences within their homes and how they impact on the attainment of the public rights can become clear.
With a proper understanding of the lifelong caring relationships and the day-to-day realities of persons with intellectual disabilities, it would be easier to acknowledge the important contribution of family caregivers and to offer them the support they so richly deserve.
*Dr Callista Kahonde is a postdoctoral fellow at the Centre for Disability and Rehabilitation Studies in the Faculty of Medicine and Health Sciences at Stellenbosch University.
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