Jean-Francois Trani

Services for adults with an autism spectrum disorder.

The need for useful evidence about services is increasing as larger numbers of children identified with an autism spectrum disorder (ASD) age toward adulthood. The objective of this review was to characterize the topical and methodological aspects of research on services for supporting success in work, education, and social participation among adults with an ASD and to propose recommendations for moving this area of research forward. We reviewed the literature published in English from 2000 to 2010 and found that the evidence base about services for adults with an ASD is underdeveloped and can be considered a field of inquiry that is relatively unformed. Extant research does not reflect the demographic or impairment heterogeneity of the population, the range of services that adults with autism require to function with purposeful lives in the community, and the need for coordination across service systems and sectors. Future studies must examine issues related to cost and efficiency, given the broader sociopolitical and economic context of service provision. Further, future research needs to consider how demographic and impairment heterogeneity have implications for building an evidence base that will have greater external validity.

Disability and Poverty: the need for a more nuanced understanding of implications for development policy and practice

Abstract The international development community is beginning to recognise that people with disabilities constitute among the poorest and most vulnerable of all groups, and thus must be a core issue in development policies and programmes. Yet the relationship between disability and poverty remains ill-defined and under-researched, with few studies providing robust and verifiable data that examine the intricacies of this relationship. A second, linked issue is the need for—and current lack of—criteria to assess whether and how disability-specific and disability ‘mainstreamed’ or ‘inclusive’ programmes work in combating the exclusion, marginalisation and poverty of people with disabilities. This article reviews existing knowledge and theory regarding the disability–poverty nexus. Using both established theoretical constructs and field-based data, it attempts to identify what knowledge gaps exist and need to be addressed with future research.

Access to health care, reproductive health and disability: A large scale survey in Sierra Leone

This is the first study to compare health status and access to health care services between disabled and non-disabled men and women in urban and peri-urban areas of Sierra Leone. It pays particular attention to access to reproductive health care services and maternal health care for disabled women. A cross-sectional study was conducted in 2009 in 5 districts of Sierra Leone, randomly selecting 17 clusters for a total sample of 425 households. All adults who were identified as being disabled, as well as a control group of randomly selected non-disabled adults, were interviewed about health and reproductive health. As expected, we showed that people with severe disabilities had less access to public health care services than non-disabled people after adjustment for other socioeconomic characteristics (bivariate modelling). However, there were no significant differences in reporting use of contraception between disabled and non-disabled people; contrary to expectations, women with disabilities were as likely to report access to maternal health care services as did non-disabled women. Rather than disability, it is socioeconomic inequality that governs access to such services. We also found that disabled women were as likely as non-disabled women to report having children and to desiring another child: they are not only sexually active, but also need access to reproductive health services. We conclude that disparity in access to government-supported health care facilities constitutes a major and persisting health inequity between persons with and without disabilities in Sierra Leone. Ensuring equal access will require further strengthening of the countrys health care system. Furthermore, because the morbidity and mortality rates of pregnant women are persistently high in Sierra Leone, assessing the quality of services received is an important priority for future research.

Disability, vulnerability and citizenship: to what extent is education a protective mechanism for children with disabilities in countries affected by conflict?

Humanitarian crises as a result of conflict are often characterised by failure of the social contract between the state and its citizens. For a variety of reasons, children with disabilities are often particularly vulnerable in time of humanitarian crisis. This paper draws on research undertaken by the authors in a series of countries affected by conflict and looks at how the politics and policies of such countries, and the humanitarian and development agencies working in them, continue to exclude children with disabilities from formal and informal education structures. It will be argued that this exclusion not only impedes progress on inclusive education, but also has wider implications as education programmes are often the conduit through which a number of additional child protection mechanisms are implemented. Children with disabilities who are not in the formal education system are therefore at risk not only of missing out on education opportunities, but are also excluded from critical child survival initiatives, thus increasing their vulnerability.

Mental illness, poverty and stigma in India: a case–control study

Objective To assess the effect of experienced stigma on depth of multidimensional poverty of persons with severe mental illness (PSMI) in Delhi, India, controlling for gender, age and caste. Design Matching case (hospital)–control (population) study. Setting University Hospital (cases) and National Capital Region (controls), India. Participants A case–control study was conducted from November 2011 to June 2012. 647 cases diagnosed with schizophrenia or affective disorders were recruited and 647 individuals of same age, sex and location of residence were matched as controls at a ratio of 1:2:1. Individuals who refused consent or provided incomplete interview were excluded. Main outcome measures Higher risk of poverty due to stigma among PSMI. Results 38.5% of PSMI compared with 22.2% of controls were found poor on six dimensions or more. The difference in multidimensional poverty index was 69% between groups with employment and income of the main contributors. Multidimensional poverty was strongly associated with stigma (OR 2.60, 95% CI 1.27 to 5.31), scheduled castes/scheduled tribes/other backward castes (2.39, 1.39 to 4.08), mental illness (2.07, 1.25 to 3.41) and female gender (1.87, 1.36 to 2.58). A significant interaction between stigma, mental illness and gender or caste indicates female PSMI or PSMI from ‘lower castes’ were more likely to be poor due to stigma than male controls (p<0.001) or controls from other castes (p<0.001). Conclusions Public stigma and multidimensional poverty linked to SMI are pervasive and intertwined. In particular for low caste and women, it is a strong predictor of poverty. Exclusion from employment linked to negative attitudes and lack of income are the highest contributors to multidimensional poverty, increasing the burden for the family. Mental health professionals need to be aware of and address these issues.

Water and sanitation issues for persons with disabilities in low- and middle-income countries: a literature review and discussion of implications for global health and international development

The critical importance of unrestricted access to clean drinking water and basic sanitation for all is highlighted in Millennium Development Goal 7, which calls for the reduction by half of the proportion of people without such access by 2015. Unfortunately, little attention has been paid to the needs of such access for the one billion people living with a disability worldwide, despite the fact that the right to equal access for all international development initiatives is guaranteed in the new United Nations Convention on the Rights of Persons with Disabilities. In this paper, we review what is currently known about access to water and sanitation for persons with disabilities in low- and middle-income countries from the perspective of both international development and global health, and identify existing gaps in research, practice and policy that are of pressing concern if the water and sanitation needs of this large - and largely overlooked - population are to be addressed.

Capabilities, Perception of Well-being and Development Effort: Some Evidence from Afghanistan

This paper examines the relationship between capabilities, well-being and the impact of development efforts in Afghanistan. Using data from a nationally representative survey, it is argued that very vulnerable groups maintain a positive perception of well-being by referring to collective values and practices. The data suggest that deprivation of individual basic capabilities does not systematically lead to a low perception of well-being if individuals have access to other capabilities such as love, care and participation in community affairs. Nevertheless, access to basic capabilities remains crucial in order to ensure that social norms and expectations cease to constitute constraints and become factors through which agency and empowerment are enhanced. The results also show the dangers of tackling inequalities by designing policies that target individuals isolated from the group.

Disability and Poverty in Morocco and Tunisia: A Multidimensional Approach

Abstract Although a growing body of research is exploring the links between disability and poverty, the evidence that persons with disabilities are more likely to be poor than their non-disabled counterpart remains scarce. The causal relationship between disability and poverty has most often been considered in terms of disparities in income or living conditions. However, some research strongly suggests that disability is associated with deprivation in a number of other dimensions. To date, no study has examined these associations using large scale surveys with a wide range of wellbeing dimensions and indicators using a multidimensional approach. The present paper presents findings of three multidimensional poverty measures based on 17 indicators of deprivation collected through large-scale household surveys in Morocco and Tunisia. These indicators cover a wide range of dimensions of poverty such as health, education, employment, material well-being, social participation, psychological well-being and physical security. Results confirm that persons with disabilities are poorer than non-disabled people in both countries. The study shows that persons with disabilities, particularly girls and women, rural residents, and those with intellectual, mental or multiple disabilities are particularly deprived of basic capabilities and functionings and that stigma plays a role in this social injustice. Civil society organizations should take the lead to promote awareness of social and emotional well-being of persons with disabilities.

Delivering Education; Maintaining Inequality. The Case of Children with Disabilities in Afghanistan.

Education for children with disabilities in Afghanistan, particularly disabled girls, continues to lag behind despite laudable efforts of the Ministry of Education to promote universal access for all. The opportunity for education constitutes not just a means of achieving learning outcomes but also a space for social interaction, individual development and psychosocial support, which are paramount in Conflict-Affected Fragile States (CAFS). However, many persisting barriers still need to be overcome in Afghanistan to allow education for all and change negative attitudes towards education of children with disabilities. In this paper we argue that viewing education as a basic commodity, which is the widespread practice in CAFS, is not conducive to expanding human freedoms and capabilities. More specifically, through analyses of a national survey, we demonstrate that despite considerable resources, increasing access to education in Afghanistan has maintained processes of marginalisation of the already excluded.

Development and validation of the 34-Item disability screening questionnaire (DSQ-34) for use in low and middle income countries epidemiological and development surveys

Background Although 80% of persons with disabilities live in low and middle-income countries, there is still a lack of comprehensive, cross-culturally validated tools to identify persons facing activity limitations and functioning difficulties in these settings. In absence of such a tool, disability estimates vary considerably according to the methodology used, and policies are based on unreliable estimates. Methods and Findings The Disability Screening Questionnaire composed of 27 items (DSQ-27) was initially designed by a group of international experts in survey development and disability in Afghanistan for a national survey. Items were selected based on major domains of activity limitations and functioning difficulties linked to an impairment as defined by the International Classification of Functioning, Disability and Health. Face, content and construct validity, as well as sensitivity and specificity were examined. Based on the results obtained, the tool was subsequently refined and expanded to 34 items, tested and validated in Darfur, Sudan. Internal consistency for the total DSQ-34 using a raw and standardized Cronbach’s Alpha and within each domain using a standardized Cronbach’s Alpha was examined in the Asian context (India and Nepal). Exploratory factor analysis (EFA) using principal axis factoring (PAF) evaluated the lowest number of factors to account for the common variance among the questions in the screen. Test-retest reliability was determined by calculating intraclass correlation (ICC) and inter-rater reliability by calculating the kappa statistic; results were checked using Bland-Altman plots. The DSQ-34 was further tested for standard error of measurement (SEM) and for the minimum detectable change (MDC). Good internal consistency was indicated by Cronbach’s Alpha of 0.83/0.82 for India and 0.76/0.78 for Nepal. We confirmed our assumption for EFA using the Kaiser-Meyer-Olkin measure of sampling well above the accepted cutoff of 0.40 for India (0.82) and Nepal (0.82). The criteria for Bartlett’s test of sphericity were also met for both India (< .001) and Nepal (< .001). Estimates of reliability from the two countries reached acceptable levels of ICC of 0.75 (p<0.001) for India of 0.77 for Nepal (p<0.001) and good strength of agreement for weighted kappa (respectively 0.77 and 0.79). The SEM/MDC was 0.80/2.22 for India and 0.96/2.66 for Nepal indicating a smaller amount of measurement error in the screen. Conclusions In Nepal and India, the DSQ-34 shows strong psychometric properties that indicate that it effectively discriminates between persons with and without disabilities. This instrument can be used in association with other instruments for the purpose of comparing health outcomes of persons with and without disabilities in LMICs.