CHOOSING A CAREGIVER FOR YOUR CHILD WITH A DISABILITY
The topic briefly describing the context for caregivers of children with disabilities, and briefly mentioning some of the challenges they face. After describing the impetus of the study which involved partnering with DICAG, I presented the research question: exploring the experiences of caregivers with disabilities at DICAG-affiliated Centre’s near Cape Town, South Africa. Thereafter describing some of the associated aims and objectives of the project, and the rationale for the study, including supporting DICAG, its affiliated Centre’s, and caregivers of children with disabilities by Swartz (2017).
Role of Caregiver in Disabilities
Caregiving role refers to participants’ primary role in caring for children with disabilities. Associated centre refers to the DICAG-affiliated centre where participants worked, attended support meetings, and/or participated in the research project (since some participants neither worked nor attended meetings at a centre). Two of the participants ran their own pre-schools, but came to one of the centers to participate in the study. Language choice refers to the predominant language which participants chose to speak during the interviews. Despite this, most participants code-switched between languages to varying degrees during the interviews.
Types of caregivers.
People with various occupations comprise caregivers of children with disabilities. Family members, health professionals and teachers might provide care to different extents and for different periods of time in children’s lives. Caregivers of children with disabilities are by no means a homogenous population (Resch et al., 2010). Paid caregivers, such as teachers and nurses, may or may not have formal training in caregiving, and might work in a variety of locations such as hospitals, clinics, residential homes, community centres, schools, and private homes (Coetzee, 2016). Others who care for children with disabilities include more informal caregivers such as family members, comprising parents, grandparents, siblings or other relatives (Coetzee, 2016).While the types of caregivers in the included study were limited by the search terms and inclusion criteria, I found it interesting to observe the representation of different types of caregivers in the studies, as well as which caregivers were not represented.
Places of caring for children with disabilities.
Caregivers care for children with disabilities in many of corners society, from more formal institutions such as hospitals, to informal care centres and private homes. Formal institutions of care. Paid caregivers in formal institutions, such as psychiatric hospitals, include nurses who care for individuals with intellectual and psychiatric disabilities. In primary health care clinics, nurses are often the main providers of care and services for people with disabilities (Mavundla, Toth, & Mphelane, 2009). Caregivers who work in disability sectors at hospitals and clinics are often underpaid and overworked, due to staff shortages, a lack of resources, and insufficient focus on the voices and needs of those who care (Capri & Buckle, 2015). Schools and edu-care centres where teachers, therapists, and other professionals attend to the needs of children with disabilities may also be places of care (Coetzee & Johns, 2016).
Care for caregivers.
From an ethics of care perspective, shifting the distribution of who cares to a more gender (as well as race and class) equitable distribution is not sufficient; attending to the care needs of caregivers themselves is also a priority for a caring and just world (Kittay et al., 2005). In Love’s Labour, Kittay (1999) argues that we have the responsibility and obligation to attend to caregivers’ needs as much as nwe do to the needs of the cared for—in this case, children with disabilities. At times due to the asymmetrical nature of many caregiving relationships in which the receivers of care are often not able to reciprocate, and potentially due to caregivers being unable to attend to their own needs due to being wrapped up in caregiving duties to others, caregivers may often note receive the care that they need (Kittay et al., 2005). Kittay et al. (2005) argue that recognising and attending to caregivers’ own needs is a way of honouring the care work that they do, and that ways that they often forgo their own needs for those in their care. The ways in which many of the mothers in this study prioritised the needs of their children over their own needs exemplifies the phenomena that Kittay et al. (2005) write about.
The gratitude and relief with which participants spoke about people who supported them by caring for them and their children, and provided them with opportunities for “me-time” illustrate the importance of receiving care as caregivers. The value which some participants attributed to being able to process their experiences and be listened to in a caring environment during the interviews also demonstrates their need and gratitude for being cared for. Participants’ references to some challenging experiences also allude to their needs or desire for care. These experiences, which echo experiences of caregivers in other South African literature, include feeling tired (e.g. Mathye & Eksteen, 2016); feeling stressed and frustrated (e.g. Sandy et al., 2013); and feeling unsupported by family or community members (e.g.Mhaule & Ntswane-Lebang, 2009). This points to the necessity of providing care for caregivers, including attending to their emotional needs, and providing opportunities for respite from care in the form of relief care. In line with Tronto’s (1993) requirements for good care, we not only need to notice, take responsibility, and attend to caregivers’ needs; we also need to engage with caregivers as receivers of care to enquire about their needs and experiences of care, and respond accordingly
Disabled Children’s Action Group: DICAG
An example of such an Organisation in South Africa is the Disabled Children’s Action Group (DICAG), formed in 1993 by and for the parents of children with disabilities. DICAG is actively involved in advocacy and development of caregivers and their children with disabilities. The Organisation supports and runs programmes and initiatives involving prevention, rehabilitation, social integration, parent mobilization, and empowerment of children with disabilities, their siblings and parents. In particular, DICAG aims to support children with disabilities and their caregivers who live in difficult circumstances due to poverty, environmental location, racial oppression, and/or severe disability (DICAG, n.d.). Amongst a myriad of other challenges faced by DICAG and its members, Ms Ambrose described some of the difficulties experienced by caregivers of children with disabilities, including those who work in DICAG-affiliated day-care centres around South Africa. Reporting from her extensive involvement with caregivers of children with disabilities, Ms Ambrose talked about how many caregivers are overworked, and may experience trauma as they care for their own or others’ children with disabilities who have been abused. Despite heavy workloads and stressful encounters involved in their care-work at home or day-care centres, caregivers tend to have few, if any, opportunities to process their experiences, to rest, or to heal.
Policies Linked to Caregivers of Children with Disabilities
The South African government has signed or published a number of policy documents regarding the rights of children with disabilities and their caregivers. In 1996, South Africa signed the United Nations Convention on the Rights of the Child (UNCRC), and in 2007 the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Based in part on concepts in these documents and various Acts in the South African Constitution, the Department of Social Development (DSD; 2009) published the Integrated National Strategy on Support Services to Children with Disabilities. This document outlines government strategies for implementing the rights of children with disabilities, including strategies related to their caregivers. The report highlights the importance of listening to the views of children with disabilities, their parents, and other caregivers, concerning issues related to decision making processes which affect these populations. In addition, the report states that psychosocial interventions, life skills training, parental programmes, respite care services, and other forms of community support should be accessible to families with children with disabilities, to help them cope with the challenges they face, and “enable them to function optimally in society” (DSD, 2009, p.31-32). In a joint paper comprising a situational analysis of children with disabilities in South Africa, the DSD, Department of Women, Children and People with Disabilities, and UNICEF (2012) emphasise the necessity of parent and caregiver support, including ensuring that caregivers of children with disabilities have access to information about training and resources, both for themselves and for their children.
One group of careers of children with disabilities who require training and support is teachers (DSD et al., 2012). In 2001, the Department of Education (DoE; 2001) published the white paper on inclusive education, which aims to address barriers to learning of students, both by strengthening the support offered by special schools, and by changing mainstream schools to be more accommodating and accessible to people with disabilities.The Social Assistance Act (Republic of South Africa, 2004) includes the care dependency grant for parents, foster parents, and other primary carers of a children requiring permanent care or support services due to mental or physical disability. To qualify for this grant, a child must undergo medical assessments or proof of disability, and the caregiver must be within a certain income or means threshold (Republic of South Africa, 2004). Despite policies advocating for the support of caregivv\ers and children with disabilities, and progress in achieving associated goals to some extent, uncoordinated and inadequate government systems and programmes mean that many South African children and their caregivers do not receive the support they need (DSD, 2009).
In South Africa, the government has shown desire to provide care and support for caregivers and children with disabilities, through policy documents which outline many of the support needs described by caregivers in this study (DSD, 2009). However, as described in other South African studies, it appears some caregivers of children with disabilities experience insufficient services and support from government, as well as from their communities.
Department of Social Development. (2009). Integrated national strategy on support services to children with disabilities. Pretoria, South Africa. Retrieved from www.hsrc.ac.za/en/researchdata/
Department of Social Development. (2012). White paper on families in South Africa. Pretoria, South
Africa: Department of Social Development. Retrieved from www.dsd.gov.za
Kittay, E. F., Jennings, B., & Wasunna, A. A. (2005). Dependency, difference and the global ethic of longterm care. Journal of Political Philosophy, 13(4), 443–469. http://doi.org/10.1111/j.1467- 9760.2005.00232.x
Kittay, E. F. (1999). Love’s labor: Essays in women, equality and dependency. New York, NY: Routledge.
Mathye, D., & Eksteen, C. A. (2016). Causes of childhood disabilities in a rural South African community: Caregivers’ perspective. African Journal for Physical Activity and Health Sciences, 22(2:2), 590–604. Retrieved from http://reference.sabinet.co.za.ez.sun.ac.za/
Mhaule, V. N., & Ntswane-Lebang, M. A. (2009). Experiences of caregivers of individuals suffering from schizophrenia in rural areas of the Mpumalanga Province of South Africa. African Journal of Nursing and Midwifery, 11(1), 118–136. Retrieved from http://www.nph.go.th/Document/ajnm
Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. New York, NY: Routledge. Retrieved from https://books.google.com/books?