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Addressing disability-related costs through social protection systems

COTE, Alexandre
CARRARO, Ludovico
SIJAPATI BASSNET, Bimbika
NASIIR, Mercoledi
SRISOM, Sawang
WAKANIYASI, Josh
O'BRIEN, Felicity
October 2020

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Understanding disability-related costs is critical to building social protection systems that truly support inclusion, participation, and sustainable escape from poverty of persons with disabilities across the life cycle. It challenges some usual approaches with regards to targeting, mutually exclusive benefits, and focus on incapacity to work rather than support to inclusion. 

Supporting the dissemination of a background paper, the webinar presented the diversity of disability-related costs and the role of different methods used to assess them. It also presented some practices of accounting for disability costs in the design of mainstream social protection schemes as well as how low and middle-income countries can progressively build the combination of cash transfers, concessions, and services needed to address them.

 

Speakers topics were:

Understanding disability-related costs for better social protection systems.

Accounting for disablity related costs in design of mainstream family assistance schemes, the case of Moldova and Mongolia.

Supporting a survey to estimate the good and services required for basic participation in Indonesia.

How social protection systems can progressively address disability-related costs: the case of Thailand. 

Not either or Disability allowance and economic empowerment in Fiji.

Understanding disability extra costs

CENTRE FOR INCLUSIVE POLICY
September 2020

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Extra costs incurred by people with disabilitites are illustrated through case studies of children, adults and older people with disabilities. 

Getting the data - How much does aid money support inclusion of persons with disabilities?A guide for advocates in the disability movement to work with the data generated by the OECD-DAC ‘disability marker’ in aid.

MEEKS, Polly
July 2020

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Official Development Assistance is a vital resource for realising the rights of persons with disabilities. In 2019, development partners spent 153 billion US dollars of ODA. Under the United Nations Convention on the Rights of Persons with Disabilities and the Sustainable Development Goals, development partners are committed to make their ODA disability inclusive. And ODA is governed in a way that offers important advocacy opportunities for the disability movement. Taken together, these factors make ODA an essential resource for realising the CRPD. ODA can never be a substitute for national governments’ obligations to finance the rights of persons with disabilities, but it can make a very significant contribution in the short term. In fact, research in some countries has found ODA to be a much bigger source of finance for the rights of persons with disabilities than domestic government budgets.

The new ‘disability marker’ in the Organisation for Economic Cooperation and Development’s database helps to answer how much ODA actually aims to be disability inclusive. Using the disability marker, every ODA project in the database is now sorted into one of 4 categories

Considering the disability related extra costs in social protection

MONT, Daniel
COTE, Alexandre
et al
June 2020

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This paper tackles several critical elements required for social protection systems and programs to adequately consider disability related extra costs. In the first part, it will explain the diversity of disability related costs. The second part will present current methods to assess and measure disability related costs and the issues they raise. The last part will present how social protection systems can take into account and tackle those different disability related costs.

 

This background paper is a part of a series produced in the frame of a project led by ILO and UNICEF in close collaboration with the International Disability Alliance (IDA) and supported by the UN Partnership on the Rights of Persons with Disabilities. It has been co-financed by Leonard Cheshire in the frame of the DFID funded I2I project. The UNPRPD project aims at developing practical guidance for countries, development agencies and DPOs for reforms towards inclusive social protection systems fostering empowerment of persons with disabilities across the life cycle. The papers summarize key issues and present policy recommendations and proposal to build inclusive social protection systems supporting empowerment and participation of persons with disabilities across the life cycle

Implications of not addressing mental health and psychosocial support (MHPSS) needs in conflict situations. K4D Helpdesk Report 582

OMERT, Anna
April 2019

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This review examines the potential implications of not addressing mental health and psychosocial support (MHPSS) needs resulting from conflict throughout the life course, including on longer term mental and physical health, communities and families (including intergenerational effects), and overall human development (including education and participation in the workforce). 

A social business case for disability inclusion in development

LUKKIEN, Annet
December 2018

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This article looks at literature focussing on the benefits and costs of disability inclusion for a wide range of stakeholders. Included are the perspectives of persons with a disability, households, employers, education and health service providers and governments. 

‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism

CLASQUIN-JOHNSON, Mary G.
CLASQUIN-JOHNSON, Michel
2018

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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.

Household expenditure on leprosy outpatient services in the Indian health system: A comparative study.

TIWARI, Ajun
et al
January 2018

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The primary objective of this study is to estimate the expenditure in primary (outpatient) care incurred by leprosy patients in two different health system settings in India. The secondary objective is to compare the effect of the health systems on consumer behaviour and practices. 

The study followed a cross-sectional design, where a cohort from the Union Territory of DNH (an administrative division ruled directly by the federal government) was compared with a cohort from Umbergaon block of Valsad district, Gujarat, India. A block is the smallest administrative unit under a district. The cohorts were leprosy cases detected between April 2015 and March, 2016. A sample of 120 participants from each group was selected randomly. In the financial year of 2015–16, DNH reported 425 and Umbergaon reported 287 cases. 

A household survey was conducted between June and October, 2016 by means of a structured questionnaire collecting data on patient demographics, HH socioeconomic status, accessibility of health services, treatment seeking history and OPD expenditure. Respondents were asked to report on the last three OPD visits, either in a public or private facility, in the last 6 months. 

The costs were categorized as direct and indirect expenditure. The direct part included the expenditure on consultation, investigations and medicines & supplies. The indirect part constituted expenditure on transport, food, and days lost during illness of the patient and attendant

PLOS Neglected Tropical Diseases, January 4, 2018

https://doi.org/10.1371/journal.pntd.0006181

People with disabilities and income-related social protection measures in South Africa: Where is the gap?

HANASS-HANCOCK, Jill
MCKENZIE, Tamlyn C.
2017

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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

HANASS-HANCOCK, Jill
NENE, Siphumelele
DEGHAYE, Nicola
PILLAY, Simmi
2017

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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.

Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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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.

Community based rehabilitation for people with disabilities in low and middle income countries : a systematic review

IEMMI, Valentina
et al
September 2015

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This Campbell Collaboration systematic review assesses the effectiveness and cost-effectiveness of community-based rehabilitation (CBR) for people with physical and mental disabilities in low- and middle-income countries, and/or their family, their carers, and their community. This review identified 15 studies that assessed the impact of community-based rehabilitation on the lives of people with disabilities and their carers in low- and middle-income countries. The studies included in the review used different types of community-based rehabilitation interventions and targeted different types of physical (stroke, arthritis, chronic obstructive pulmonary disease) and mental disabilities (schizophrenia, dementia, intellectual impairment). The authors conclude that the evidence on the effectiveness of CBR for people with disabilities in low- and middle-income countries suggests that CBR may be effective in improving the clinical outcomes and enhancing functioning and quality of life of the person with disabilities and his/her carer and recommend future studies will need to adopt better study designs, will need to focus on broader clients group, and to include economic evaluations

Campbell Systematic Reviews 2015:15

The economic costs of exclusion and gains of inclusion of people with disabilities : evidence from low and middle income countries

BANKS, Lena Morgon
POLACK, Sarah
2015

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This report, formed of two parts, provides robust empirical basis to support the theorized disability-poverty link. The first section presents a systematic review of the literature on the relationship between disability and economic poverty. The second section explores the economic consequences of the exclusion and inclusion of people with disabilities in the areas of education, employment and health. The key pathways through which these economic costs may arise are discussed and studies that have attempted to quantify the financial impacts are reviewed

Factors that influence doctors in the assessment of applicants for disability grant

TUMBO, JM
2014

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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

GOODLEY, Dan
LAWTHOM, Rebecca
RUNSWICK-COLE, Katherine
2014

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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.

What are the impacts of approaches to increase the accessibility to education for people with a disability across developed and developing countries and what is known about the cost-effectiveness of different approaches?

BAKHSHI, Parul
KETT, Maria
OLIVER, Kathryn
June 2013

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This study presents a mapping of existing evidence that provides information about the impact of initiatives that provide education for children with disabilities, and also identifies any studies that provide an analysis about the cost-effectiveness of existing initiatives. It is useful for policymakers, researchers, practitioners, parents of children with disabilities and the children themselves

Community volunteers : an asset for detecting and following up children with disabilities

INTERNATIONAL CENTER FOR EVIDENCE ON DISABILITY (ICED)
December 2012

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This video presents a  recording of a seminar held at the London School of Hygiene and Tropical Medicine (LSHTM) in November 2012.  The seminar explores the findings and recommendations from a four year CBM-funded project in Bangladesh and Pakistan to identify children with disabilities and connect them with appropriate rehabilitative services

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