The experience of persons with disabilities as beneficiaries of Ghana's District Assemblies Common Fund.

Ghana's Disability Fund aims to build the capacity of persons with disabilities, particularly those outside of formal employment, to engage in livelihood generation activities as a way to reduce poverty. The objective of this paper is to investigate the kind of knowledge that exists on the District Assemblies Common Fund program, understand the experience of beneficiaries when they access the program, and examine the benefits on beneficiaries' livelihoods. The research consisted of five focus group discussions with 35 beneficiaries, key informant interviews with six member organizations of Ghana Federation of Disability Organizations, and interviews with eleven Disability Fund Management Committees members. This research found the experiences of beneficiaries on the program are varied yet the program on the whole has had a positive outcomes on their livelihoods. Persons with disabilities who participated in this study demonstrated knowledge of the program. Beneficiaries further described issues relating to the quality of purchased items, the procurement process, as well as reductions and changes to requested items. Disability-specific issues in accessing the funds were also noted. These limited the effectiveness of the Fund to meet its stated goals. The findings of the study can inform the Common Fund Secretariat efforts to improve the performance of the fund as well as the advocacy of the disability movement. The findings are also relevant to the design and implementation of other social protection programmes in low-and middle-income countries.

Estimating the extra disability expenditures for the design of inclusive social protection policies.

For social protection policies to be inclusive they must address the extra costs that people with disabilities incur. Studies show that these costs are highly significant and if not taken into account the economic wellbeing of people with disabilities is underestimated. Additionally, disability costs vary significantly by the type and degree of disability. To align the structure of social protection programs with how costs are incurred to promote equal participation requires estimating those costs. The Goods and Services Required approach, it is argued, is better than the often used Standard of Living Approach, and has implications for policy design.

Estimating Households' Expenditures on Disability in Africa: The Uses and Limitations of the Standard of Living Method.

People with disabilities face extra costs of living to participate in the social and economic lives of their communities on an equal basis with people without disabilities. If these extra costs are not accounted for, then their economic wellbeing will be overestimated. The Standard of Living (SOL) method is a way of generating these estimates and is thus useful for determining the economic impact of those costs in the current environment. However, previous studies have used different indicators for disability and different measures of the standard of living, so it is hard to compare estimates across different countries. This study applies a consistent set of indicators across seven African countries to produce comparable estimates. Our estimates of the extra costs of living in these lower-income countries are much lower than the results produced for higher-income countries in prior work. We argue that this finding highlights the limitations of the SOL method as a useful source of information for developing inclusive systems of social protection in lower-income countries because it captures what households spend but not what the person with a disability needs to fully participate in the social and economic lives of their community. In lower-income countries, people with disabilities are likely to have fewer opportunities to spend on needed items thus resulting in substantial unmet need for disability-related goods and services. Failing to account for these unmet needs can lead to inadequate systems of social protection if they are based solely on SOL estimates.

Harmonizing Disability Data To Improve Disability Research And Policy.

Disability is complex and multifaceted, complicating governments' efforts to collect the high-quality, comprehensive data necessary for developing, implementing, and monitoring policies. Yet data are needed to obtain information on functioning in the population, to identify the population with disabilities, and to disaggregate indicators of well-being by disability to determine whether people with disabilities are participating in society to the same extent as those without disabilities. In this article we discuss the need for data harmonization to improve disability research and policy. We describe standard question sets on disability developed for inclusion in surveys and administrative systems, as well as the need for coordination of both statistical and administrative data systems. Until disability data become more harmonized, it will not be possible to support the development of comprehensive, evidence-based policies and programs to address the needs of the population with disabilities.

Access to Assistive Technology during the COVID-19 Global Pandemic: Voices of Users and Families.

The SARS COVID-19 pandemic emerged in 2019 and has impacted people everywhere. Disparities in impact and outcomes are becoming apparent for individuals and communities which go beyond the trajectory of the disease itself, influenced by the strength and weaknesses of systems of universal health care, and the actions of civil society and government. This article is one of a series exploring COVID-19-related experiences of assistive technology (AT) users across the globe and implications for AT systems strengthening. AT such as mobility products, braille devices, and information communication technologies are key enablers of functioning, necessary to the achievement of the UN Sustainable Development Goals and enshrined in the Convention on the Rights of Persons with Disabilities. Reporting on a survey of 73 AT users across six global regions, we demonstrate that minority groups already living with health inequities are unduly impacted. An AT ecosystem analysis was conducted using the WHO GATE 5P framework, that is, people, products, personnel, provision and policy. AT users and families call for inclusive pandemic responses which encompass their needs across the lifespan, from very young to very old. We offer specific recommendations for future action to strengthen access to AT across public policy and civil society in pandemic preparedness and response.

Assistive Technology during the COVID-19 Global Pandemic: The Roles of Government and Civil Society in Fulfilling the Social Contract.

The COVID-19 pandemic imposed significant challenges to users of assistive technology (AT). Three key issues emerged from a series of structured qualitative interviews with 35 AT users in six low- and middle-income countries. These were (1) access to information about COVID-19 and available supports and policies, (2) insufficiency of the government response to meet the needs of AT users, and (3) the response of civil society which partially offset the gap in government response. AT users noted the need for better communication, improved planning for the delivery and maintenance of AT during times of crisis, and higher-quality standards to ensure the availability of appropriate technology.

Assistive Technology Provider Experiences during the COVID-19 Pandemic.

Globally, health systems face challenges in the delivery of assistive technology (AT) and only 10% of people are currently able to access the assistive products they need. The COVID-19 pandemic presented an uncharted path for AT providers to navigate, placing them under pressure to be agile and rapidly adapt. This article, part of a series, explores the experiences and impacts of the COVID-19 pandemic on AT providers and aims to inform how AT providers can be better prepared and supported in the future. A mixed methods approach was used to gather service data and perspectives from AT providers via a survey. A total of 37 responses were received from 18 countries. Service data showed extensive service disruption throughout 2020. Thematic analysis suggested significant changes to routine AT service delivery including rapid momentum towards home-based, decentralised, and digital services for which many AT providers were not prepared. Providers were required to make difficult decisions and deliver services in new ways to balance meeting demands, complying with government restrictions, and ensuring the safety of staff and clients. Few but important positives were expressed including the belief that expanded capacity to use remote and digital AT service delivery would remain useful in the future.

The development and testing of a module on child functioning for identifying children with disabilities on surveys. III: Field testing.

BACKGROUND: A module on child functioning developed by UNICEF and the Washington Group on Disability Statistics (WG) for use in censuses and surveys reflects current thinking around disability measurement and is intended to produce internationally comparable data. The Child Functioning Module (CFM) was developed in response to limitations of the Ten Question Screening Instrument (TQSI) for use in surveys and builds on the WG Short Set (WG-SS) of questions that was designed to capture disability in censuses, particularly among the adult population. OBJECTIVE: This paper documents the testing of the module and summarizes its results, including a description of prevalence levels across countries using different cut-offs, and comparisons with prevalence levels obtained using the TQSI and the WG-SS. METHODS: Field tests were conducted in Samoa as part of the 2014 Demographic and Health Survey and in Mexico as part of the 2015 National Survey of Boys, Girls and Women. The module was also implemented in Serbia as part of a dedicated survey conducted in the province of Vojvodina, in February 2016. RESULTS: Using the recommended cut-offcut-off, the percentage of children reported as having functional difficulty ranges from 1.1% in Serbia to 2% in Mexico among children aged 2-4 years, and from 3.2% in Samoa to 11.2% in Mexico among children aged 5-17 years. Across all three countries, the prevalence of functional difficulty was highest in the socio-emotional domains. A comparison of the prevalence levels obtained using the WG-SS and the CFM shows that, except for the question on cognition/learning, the WG-SS and the CFM are relatively close for children aged 5-17 years for the domains that are included in both question sets, but the WG-SS excludes many children identified by the CFM in other domains. The comparison between the TQSI and the CFM shows that, while the prevalence estimates are similar for seeing and hearing, significant differences affect other domains, particularly cognition/learning and communication. CONCLUSIONS: The CFM addresses a full range of functional domains that are important for child development. The module represents an improvement on the TQSI in that it allows for scaled responses to determine the degree of difficulty, and so can separate out many potential false positives. The module is also preferred over the WG-SS for collecting data on children, first, because most of the questions in the WG-SS are not suitable for children under the age of 5 years, and second, because the WG-SS leaves out important functional domains for children aged 5-17 years, namely those related to developmental disabilities and behavioural issues.

The development and testing of a module on child functioning for identifying children with disabilities on surveys. I: Background.

This is the first of three papers that will document the development of a survey module on child functioning developed by UNICEF in collaboration with the Washington Group on Disability Statistics (WG), and demonstrate - both conceptually and through test results - the strengths of that module compared with alternative tools for identifying children with disabilities in household surveys. This first paper in the series sets the background and reviews the literature leading to the development of the UNICEF/WG Child Functioning Module (CFM) and presents the WG Short Set of questions (WG-SS) and the Ten Question Screening Instrument (TQSI) as precursors, outlining some of their shortcomings and how the UNICEF/WG CFM was designed to meet those challenges. Subsequent articles will summarize results from the cognitive and field testing of the CFM including comparisons with results derived from the TQSI and the WG-SS.

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

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. CONCLUSIONS: More quantitative evidence is needed using rigorous methods, for instance evidence based on longitudinal data and as part of policy evaluations. More internationally comparable data on disability is required for the quantitative evidence to develop, especially in low- and middle-income countries where studies are scarce. Qualitative and participatory research is also needed, especially to investigate unmet needs, and the consequences of extra costs.

Prevalence of HIV infection among people with disabilities: a population-based observational study in Yaoundé, Cameroon (HandiVIH).

BACKGROUND: In resource-limited settings, people with disabilities have been left behind in the response to HIV. In the HandiVIH study, we estimate and compare HIV prevalence and associated risk factors between people with and without disabilities. METHODS: In this cross-sectional, population-based, observational study, we used two-phase random sampling to recruit adults with disabilities and a control group matched for age, sex, and residential location from households of the general population. We used the Washington Group Short Set of Questions on Disability to identify people with disabilities. We administered an HIV test and a life-course history interview to participants. The primary outcome was the prevalence of HIV among participants with and without disabilities. FINDINGS: Between Oct 2, 2014, and Nov 30, 2015, we recruited 807 people with disabilities and 807 participants without disabilities from Yaoundé, Cameroon. 28 of 716 people in the control population had a positive HIV test result (crude prevalence 3·9%, 95% CI 2·9-5·3) compared with 50 of 739 people with disabilities (6·8%, 5·0-8·6; conditional odds ratio [OR] 1·7; p=0·04). Women with disabilities were more often involved in paid sexual relationships than were women without disabilities (2·5% vs 0·5%, p=0·05). People with disabilities were also at increased risk of sexual violence than were women without disabilities (11·0% vs 7·5%, OR 1·5; p=0·01). Sexual violence and sex work were strongly associated with increased risk of HIV infection among participants with disabilities but not among controls (OR 3·0, 95% CI 1·6-5·6 for sexual violence and 12·3, 4·4-34·6 for sex work). Analyses were done in men and women. INTERPRETATION: The higher prevalence of HIV infection in people with disabilities than people without disabilities reflects a higher exposure to HIV infection as well as the presence of disability-associated HIV infection. The susceptibility of people with disabilities to HIV infection seems to be shaped by social and environmental factors. Research is needed to inform firm recommendations on how to protect this vulnerable population. FUNDING: Agence nationale de recherches sur le sida et les hépatites virales (ANRS-Inserm) and the 5% Initiative.

HandiVIH--A population-based survey to understand the vulnerability of people with disabilities to HIV and other sexual and reproductive health problems in Cameroon: protocol and methodological considerations.

INTRODUCTION: In resource-limited countries, people with disabilities seem to be particularly vulnerable to HIV infection due to barriers to accessing information and services, frequent exposure to sexual violence and social exclusion. However, they have often been left behind in the HIV response, probably because of the lack of reliable epidemiological data measuring this vulnerability. Multiple challenges in conducting good quality epidemiological surveys on people with disabilities require innovative methods to better understand the link between disability and HIV. This paper describes how the design and methods of the HandiVIH study were adapted to document the vulnerability of people with disabilities to HIV, and to compare their situation with that of people without disabilities. METHODS AND ANALYSIS: The HandiVIH project aims to combine quantitative and qualitative data. The quantitative component is a cross-sectional survey with a control group conducted in Yaoundé (Cameroon). A two-phase random sampling is used (1) to screen people with disabilities from the general population using the Washington Group questionnaire and, (2) to create a matched control group. An HIV test is proposed to each study participant. Additionally, a questionnaire including a life-event interview is used to collect data on respondents' life-course history of social isolation, employment, sexual partnership, HIV risk factors and fertility. Before the cross-sectional survey, a qualitative exploratory study was implemented to identify challenges in conducting the survey and possible solutions. Information on people with disabilities begging in the streets and members of disabled people's organisations is collected separately. ETHICS AND DISSEMINATION: This study has been approved by the two ethical committees. Special attention has been paid on how to adapt the consenting process to persons with intellectual disabilities. The methodological considerations discussed in this paper may contribute to the development of good practices for conducting quantitative health surveys on people with disabilities. TRIAL REGISTRATION NUMBER: NCT02192658.

Can Households Cope with Health Shocks in Vietnam?

This paper investigates the economic impact of health shocks on working-age adults in Vietnam during 2004-2008, using a fixed effects specification. Health shocks cover disability and morbidity and are measured by 'days unable to carry out regular activity', 'days in bed due to illness/injury', and 'hospitalization'. Overall, Vietnamese households are able to smooth total non-health expenditures in the short run in the face of a significant rise in out-of-pocket health expenditures. However, this is accomplished through vulnerability-enhancing mechanisms, especially in rural areas, including increased loans and asset sales and decreased education expenditures. Female-headed and rural households are found to be the least able to protect consumption. Results highlight the need to extend and deepen social protection and universal health coverage. © 2015 The Authors. Health Economics published by John Wiley & Sons Ltd.

Comments on Sabariego et al. Measuring Disability: Comparing the Impact of Two Data Collection Approaches on Disability Rates. Int. J. Environ. Res. Public Health, 2015, 12, 10329-10351.

In the article, Measuring Disability: Comparing the Impact of Two Data Collection Approaches on Disability Rates, in Volume 12 of the Journal International Journal of Environmental Research and Public Health, Carla Sabariego et al. [1] raise several issues regarding the use of the short set of questions developed by the Washington Group on Disability Statistics (WG) as compared with the approach to disability measurement proposed through the Model Disability Survey (MDS). We address these below. [...].

The Economic Lives of People with Disabilities in Vietnam.

Through a series of focus group discussions conducted in northern and central Vietnam, this study gives voice to the lived economic experience of families with disabilities and how they manage the economic challenges associated with disability. The dynamic of low and unstable income combined with on-going health care and other disability-related costs gives rise to a range of coping mechanisms (borrowing, reducing and foregoing expenditures, drawing upon savings and substituting labour) that helps to maintain living standards in the short-run yet threatens the longer-term welfare of both the individual with disability and their household. Current social protection programs were reported as not accessible to all and while addressing some immediate economic costs of disability, do not successfully meet current needs nor accommodate wider barriers to availing benefits.

The impact of health insurance for children under age 6 in Vietnam: A regression discontinuity approach.

Accessing health services at an early age is important to future health and life outcomes. Yet, little is currently known on the role of health insurance in facilitating access to care for children. Exploiting a regression discontinuity design made possible through a policy to provide health insurance to pre-school aged children in Vietnam, this paper evaluates the impact of health insurance on the health care utilization outcomes of children at the eligibility threshold of six years. Using three rounds of the Vietnam Household Living Standards Survey, the study finds a positive impact on inpatient and outpatient visits and no significant impact on expenditures per visit at public facilities. We find moderately high use of private outpatient services and no evidence of a switch from private to covered public facilities under insurance. Results suggest that adopting public health insurance programs for children under age 6 may be an important vehicle to improving service utilization in a low- and middle-income country context. Challenges remain in providing adequate protections from the costs and other barriers to care.