Moodley, Jacqueline (2017). 'Measuring the Quality of Life of Children with Disabilities in South Africa' Paper presented at the annual conference of the HDCA, Cape Town 2017.
While the South African Constitution recognises the right to care, nutrition and access to services for all children, the plight of children with disabilities (CWDs) remains invisible and unrecognised in the society (DSD, DWCPD & UNICEF, 2012). This situation prevails not only in South Africa but also in other developing countries (Trani, Bakhshi & Biggeri, 2011). CWDs are at risk of marginalisation and social exclusion especially when they are poor leading to multiple forms of deprivation (Barnes, Wright, Noble & Dawes, 2007). Thus, CWDs face a double burden due to their experiences of both poverty and disability which could compromise their development in key domains. These domains include their physical, cognitive, social, psychological and emotional development (Euwema, 2006). Developing an index that allows us to adequately measure development outcomes of CWDs will contribute to highlighting their situation and provide a means upon which to develop future programmatic and policy interventions.
Disability in this study is an umbrella term that refers to “impairments, activity limitations and participation restrictions” of individuals (WHO, 2001, p.9). More specifically, the Washington Group on Disability Statistics identifies the following functional impairments as being associated with disability, namely sight, hearing, mobility, self-care, remembering, concentrating and communication (WHO, 2001). Individual factors are associated with meeting the needs of CWDs and their different growth trajectories depending on the type and severity of the disability. Environmental factors also play an important role in the optimal development of CWDs and include distributional inequalities for example, unequal access to quality education, health care and adequate social care. These social and environmental factors, together with stigma, discrimination and increased vulnerability to violence (DSD, DWCPD & UNICEF, 2012), disproportionately affect the functioning of children living with disabilities.
A preliminary literature review provided a limited body of empirical research on the QoL of CWDs in both developed and developing countries. Where such evidence exists, it is overly focused on the physical well-being of children and health outcomes (Keenaghan & Kilroe, 2008). In relation to education, Filmer (2008) found CWDs are less likely to start school and also have lower throughput rates leading to lower levels of human capital. Health and education assessments are studied independently of each other leading to fragmentation in overall QoL measurement. Some research addressed social dimensions such as stigma and isolation of CWDs (UNICEF, 2013), while others assessed their experiences of neglect (DSD, DWCPD & UNICEF, 2012) and subjective indicators of well-being (Felce & Perry, 1995). Few studies examined the association between poverty and disability in childhood, where CWDs were predominantly found to live in poorer households (Filmer, 2008). And still fewer studies assess the QoL of CWDs holistically, bringing together the various elements mentioned above. The lack of research on the QoL of vulnerable children such as CWDs seems to reflect the general invisibility of these children in society.
Nationally, approximately 6% of children aged 5-18 years have a disability (Statistics South Africa, 2014a). However, access to social protection is limited. Only 127 000 caregivers of children with severe disabilities receive the Care Dependency Grant (CDG). Fewer CWDs are attending school (78%) compared to 96% of children without disabilities (DSD, DWCPD & UNICEF, 2012). In addition, CWDs are more likely to drop out of school compared to non-disabled youth. Poor health status, poor access to healthcare and lower life expectancy are more prevalent amongst CWDs (Statistics South Africa, 2014a). In addition, they are prone to abuse and neglect (DSD, DWCPD & UNICEF, 2012) and require additional investments in care (Nussbaum, 2011). It seems reasonable to conclude that the situation of CWDs is different to that of children without disabilities. The South African Index of Multiple Deprivation for Children (SAIMDC) (Barnes et al., 2007) is a strong advocacy tool for children’s needs and rights. However, no measure exists to assess the human development situation of CWDs and to see how they fare in relation to children without disabilities.
There is therefore a need to monitor and track the quality of life (QoL) of CWDs to enhance their dignity and promote greater social justice for them. New and appropriate measures are needed to assess social progress in their access to services, economic security, protection and the level of care provided (Comin, Ballet, Biggeri & Lervese, 2011).
Although the assessment of the QoL of CWDs is critical to human development, it has received limited attention in South Africa (Graham & Ross, 2016). The term QoL is a multidimensional concept which includes both objective and subjective indicators of human well-being and development (Wallander & Koot, 2016). Jongdudomkarn and Camfield (2006) identified QoL enablers in adults only. These are family relationships, support, accommodation, health, material assets and occupation. There is, however, a dearth of research that measures the QoL of CWDs. Recent work by Trani et al. (2011) conducted in Afghanistan, proposed the use of the Capabilities Approach (CA) as a framework for analysis for CWDs. This approach is more holistic than earlier studies which dealt with QoL in a fragmented fashion and that focused only on the physical and psychological health status of children (Keenaghan & Kilroe, 2008). The proposed QoL index that will be developed in this study locates disability in the broader spectrum of human development and the achievement of equal opportunities for CWDs. The proposed index will be informed by the CA which will be applied to CWDs in the South African context using data drawn from the General Household Survey (GHS) (Statistics South Africa, 2014b; 2016). The analysis will identify how enhancing the opportunities and capabilities of CWDs are likely to enable them to achieve a level of functioning that is required for their optimal development in South Africa, and will provide a mechanism by which to operationalise the theory.