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Disability-inclusive ODA: Aid data on donors, channels, recipients
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This paper outlines a keyword approach used to identify international aid projects that are targeted for the purpose of disability inclusion, providing an estimate of the overall scale of this aid and an analysis of the key donors, recipients and channels of delivery.
‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
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Background: In this article, we reflected on our experience of the cost of parenting a child with autism, including our ongoing search for educational and therapeutic intervention.
Objectives: We aimed to give an academic insight into the state of autism education and care in South Africa as seen by us, with special attention to its cost and sustainability.
Methods: Using evocative autoethnography as storied scholarship together with critical autism studies, we reflected on stories of the past 5 years since our son’s diagnosis.
Results: Our experiences agree with international studies that establish autism as the most expensive disability. In addition to the high costs of diagnosis, existing intervention and support approaches are unaffordable for the majority of South Africans. We recommend that teachers should be trained to participate in early screening and diagnosis, as well as co-therapists, to strengthen the implementation of inclusive education.
Conclusion: The kind of autism intervention currently offered in South Africa is financially and socially unsustainable. Instead of positioning autism as an individual or family dilemma, it should be addressed as an educational and societal issue. Future research should explore cost-effective options for a developing country context, while promoting best practice within inclusive settings.
People with disabilities and income-related social protection measures in South Africa: Where is the gap?
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Background: People with disabilities are at increased risk of poverty, particularly in low-and middle-income countries. However, recent evidence suggests that this association is more nuanced than previously anticipated and that we need better data to understand the opportunity and out-of-pocket costs that diverse groups of people with disabilities may experience.
Objective: This paper discusses if disability is associated with opportunity cost and loss of income both on the individual and household level in South Africa, and if these costs differ depending on disability type and severity.
Methods: For this purpose, the paper analyses General Household Survey 2011 data (people between 15 and 59) using descriptive statistics disaggregated via disability type and severity. The paper also assesses if social grants counteract these costs and reduce economic vulnerability.
Results: The analysis of the data reveals that people with disabilities are affected by issues relating to multidimensional poverty such as lower educational attainment and fewer employment opportunities. In addition, households of people with disabilities (with the exception of milder visual problems) earn significantly less than households without people with disabilities, and this particularly applies to households with people with severe disabilities. This vulnerability also varies by disability type. The country’s social protection mechanisms, in terms of social grants, counteract economic vulnerability to some extent but do not consider the nuanced economic impact of diverse conditions nor the increased out-of-pocket costs related to disability.
Conclusions: This calls for more equitable social protection mechanisms that include accessible services, livelihood programmes and disability benefits.
‘These are not luxuries, it is essential for access to life’: Disability related out-of-pocket costs as a driver of economic vulnerability in South Africa
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Background: With the dawn of the new sustainable development goals, we face not only a world that has seen great successes in alleviating poverty but also a world that has left some groups, such as persons with disabilities, behind. Middle-income countries (MICs) are home to a growing number of persons with disabilities. As these countries strive to achieve the new goals, we have ample opportunity to include persons with disabilities in the emerging poverty alleviation strategies. However, a lack of data and research on the linkages between economic vulnerability and disability in MICs hampers our understanding of the factors increasing economic vulnerability in people with disabilities.
Methods: This article aims to present data related to elements of this vulnerability in one MIC, South Africa. Focusing on out-of-pocket costs, it uses focus group discussions with 73 persons with disabilities and conventional content analysis to describe these costs.
Results: A complex and nuanced picture of disability-driven costs evolved on three different areas: care and support for survival and safety, accessibility of services and participation in community. Costs varied depending on care and support needs, accessibility (physical and financial), availability, and knowledge of services and assistive devices.
Conclusions: The development of poverty alleviation and social protection mechanisms in MICs like South Africa needs to better consider diverse disability-related care and support needs not only to improve access to services such as education and health (National Health Insurance schemes, accessible clinics) but also to increase the effect of disability-specific benefits and employment equity policies.
Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage
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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.
Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal
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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.
Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.
Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.
Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.
Financial Access to Healthcare among Persons with Disabilities in the Kumasi Metropolis, Ghana
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Purpose: According to the World Health Organisation, 10% to 15% of the population of every developing country lives with disability. This amounts to about 2.4 - 3.6 million Ghanaians with disability. Since their contribution is important for the development of the country, this study aimed to assess the financial access to healthcare among persons with disabilities in the Kumasi Metropolis of Ghana.
Methods: A cross-sectional study, involving administration of a semi- structured questionnaire, was conducted among persons with all kinds of disabilities (physically challenged, hearing and visually impaired) in the Kumasi Metropolis. Multi-stage sampling was used to randomly select 255 persons with disabilities from 5 clusters of communities - Oforikrom, Subin, Asewase, Tafo and Asokwa. Data analysis involved descriptive and analytical statistics at 95% CI using SPSS software version 20.
Results: There were more male than female participants, nearly one-third of them had no formal education and 28.6% were unemployed. The average monthly expenditure on healthcare was GHC 21.46 (USD 6.0) which constituted 9.8% of the respondents’ income. Factors such as age, gender, disability type, education, employment, and whether or not they stayed with family members had significant bearing on the average monthly expenses on healthcare (p<0.05).Transportation cost, the travel distance to facilities, and the regular sources of payment for healthcare, had significant relationship with access to healthcare (p<0.05). Although about 63.5% of the respondents used the National Health Insurance Scheme as the regular source of payment for healthcare, 94.1% reported that sources of payment did not cover all their expenses and equipment.
Conclusion: Financial access to healthcare remains a major challenge for persons with disabilities. Measures to finance all healthcare expenses of persons with disabilities are urgently needed to improve their access to healthcare.
Inclusive Education at the crossroads in Ashanti and BrongAhafo regions in Ghana: Target not achievable by 2015
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Purpose: Inclusive education, widely acknowledged as an alternative method of making education accessible to children with special needs, has been piloted for 10 years in selected districts of Ghana. This article aims to discuss the feasibility of implementing it throughout the country, by assessing the inclusive education programme piloted in Ghana’s Ashanti and BrongAhafo regions.
Method: One round of in-depth interviews was conducted with 31 participants, to collect data on the issue under study. Participants were officials of Special Education at the national Head Office, District Special Education Coordinators, Resource Teachers, Headmasters and Classroom Teachers of inclusive education.
Results: The study findings indicated that the pilot programme did not live up to expectations when faced with challenges such as inaccessible environments, lack of resources, lack of funds, lack of qualified teachers, poor teaching methods and negative attitudes of teachers towards children with disabilities.
Conclusion: It is very unrealistic to commence inclusive education programmes unless practical measures are put in place, such as adequate funding from the government and provision of sufficient resources for inclusive schools.
Factors that influence doctors in the assessment of applicants for disability grant
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Background: A disability grant is the financial assistance given by the government to South African citizens and bona fide refugees who have debility that results in inability to work. Doctors in state hospitals and clinics are tasked with the duty of assessing applicants for this grant. Ideally, the assessment is done by an institutional committee consisting of a doctor, physiotherapist, social worker, occupational therapist and specialised nurses. However, this is not always the case because of a shortage of personnel, particularly in rural areas. A lack of clear guidelines for the assessment process has led to confusion and differences in the outcomes. This poses major problems for the doctors, as well as the applicants, who often are dependent on the grant for survival. The aim of this study was to explore the factors that influence doctors in the assessment of applicants for a disability grant.
Methods: A qualitative study using free attitude interviews was conducted amongst doctors involved in the assessment process in Limpopo province. Content analysis was used to identify themes from the interviews.
Results: The assessment process was not entirely objective and was influenced by subjective factors. These included the mood of the doctors, emotions such as anger and sympathy, and feelings of desperation. Perceptions by the doctors regarding abuse of the system, abuse of the grant, the inappropriateness of the task, lack of clear guidelines and the usefulness of the committees were important in decision making. The doctors’ personal life experiences were a major determinant of the outcome of the application.
Conclusion: The assessment of applicants for a disability grant is a subjective and emotional task. There is need for policy makers to appreciate the difficulties inherent in the current medicalised process. Demedicalisation of certain aspects of disability assessment and other social needs that doctors do not view as a purely clinical functions is necessary. In addition, there is a need for clear, uniform policy on and guidelines for the management of the grant, the role of the doctor has to be defined, healthcare practitioners must be trained in disability assessment, institutional committees should be established and intersectoral initiatives should be encouraged to address issues of poverty and dependence.
Dis/ability and austerity: beyond work and slow death
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The forthcoming book Dis/ability Studies: Theorising Disablism and Ableism argues that we are living in an historical epoch which might be described as neoliberal-ableism, in which we are all subjected to slow death, increased preca- rity and growing debility. In this paper we apply this analysis to a consideration of austerity with further reference to disability studies and politics.
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