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Access to Services and Barriers faced by People with Disabilities: A Quantitative Survey

GRILLS, Nathan
SINGH, Lawrence
PANT, Hira
VARGHESE, Jubin
MURTHY, GVS
HOQ, Monsurul
MARELLA, Manjula
2017

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Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

 

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

 

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

Hard to teach: inclusive pedagogy in social science research methods education

NIND, Melanie
LEWTHWAITE, Sarah
2017

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Amidst major new initiatives in research that are beginning to address the pedagogic dimension of building capacity in social science research methods, this paper makes the first move to apply the lens of inclusive pedagogy to research methods pedagogy. The paper explores the ways in which learning social science research methods is hard and may be anxiety-provoking, which has sometimes led to a deficit discourse in which learners are positioned as ill-prepared and fearful. Learners can then be blamed for being hard to teach when an inclusive pedagogical lens would support a more asset-based discourse. Nonetheless, the authors argue that without traditional deficit-based solutions of the remedial class, special needs label or special teacher within the methods learning environment, methods teachers have developed their own responses. These pedagogic responses, elicited from the authors’ research using methods of expert interviews, focus groups and video-stimulated dialogue, address challenges associated with the learner, the learning material and the teacher’s context. The paper differentiates between practical solution-focused strategies and more holistic approaches. The authors illustrate how methods teachers reach out to diverse learners and they conclude that data and standpoints are used in inclusive teaching to make connections and to support learning.

‘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.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

Exploring structural violence in the context of disability and poverty in Zimbabwe

MUDEREDZI, Jennifer T.
EIDE, Arne H.
BRAATHEN, Stine H.
STRAY-PEDERSEN, Babill
2017

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Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others.


Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe.


Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants.


Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care.

 

Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges.

‘Civilising’ Deaf people in Tibet and Inner Mongolia: governing linguistic, ethnic and bodily difference in China

HOFER, Theresia
SAGLI, Gry
2017

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The People’s Republic of China is home to over 20 million d/Deaf and hard-of-hearing people, many among them belonging to ethnic minorities. Drawing on ethnographic fieldwork in two minority regions, the Tibet Autonomous Region and the Inner Mongolian Autonomous Region, this article comparatively discusses findings on sign language use, education and state welfare policies. The situation in these domains is analysed through the framework of the ‘civilising project’, coined by Harrell, and its impacts on the d/Deaf and hard-of-hearing among ethnic minorities are shown. For instance, through the promotion of Chinese and Chinese Sign Language over and above the use of local sign and written languages as well as through education and the medicalisation of disabilities.

Troubling school toilets: resisting discourses of ‘development’ through a critical disability studies and critical psychology lens

SLATER, Jen
JONES, Charlotte
PROCTER, Lisa
2017

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This paper interrogates how school toilets and ‘school readiness’ are used to assess children against developmental milestones. Such developmental norms both inform school toilet design and practice, and perpetuate normative discourses of childhood as middle-class, white, ‘able’, heteronormative, cissexist and inferior to adulthood. Critical psychology and critical disability studies frame our analysis of conversations from online practitioner forums. We show that school toilets and the norms and ideals of ‘toilet training’ act as one device for Othering those who do not fit into normative Western discourses of ‘childhood’. Furthermore, these idealised discourses of ‘childhood’ reify classed, racialised, gendered and dis/ablist binaries of good/bad parenting. We conclude by suggesting new methodological approaches to school toilet research which resist perpetuating developmental assumptions and prescriptions. In doing this, the paper is the first to explicitly bring school toilet research into the realms of critical psychology and critical disability studies.

Educational inclusion and critical neuroscience: friends or foes?

BILLINGTON, Tom
2017

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Momentum is continuing to grow in the circulation of neuroscientific discourse, informing aspects of how we live but affecting too how we think about education and learning. Neurologically informed intrusions into education frequently align with psychology which has until now largely adopted a ‘medical model’, supporting policies and practices which ultimately invoke psychopathology and arguably render individual young people more vulnerable to various forms of social and educational exclusion. This paper urges caution in respect of understandings of educational neuroscience that focus on individual deficits and diagnoses. Rather it holds in mind the broader historical context for neuroscience and its implications for our understandings of what it is to be human in the twenty first century and thereafter for education and learning. Theoretical resources from critical and affective neuroscience but also critical educational psychology are brought together specifically to support the principles of inclusionist policies and practices in education.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

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.

Disability inclusion in higher education in Uganda: Status and strategies

EMONG, Paul
ERON, Lawrence
2016

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Background: Uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. Both legal and non-legal frameworks have been adopted and arguably are in line with the intent of the Convention on the Rights of Persons with Disabilities (CRPD) on education. The CRPD, in Article 24, requires states to attain a right to education for persons with disabilities without discrimination and on the basis of equal opportunities at all levels of education.


Objectives: Despite Uganda’s robust disability legal and policy framework on education, there is evidence of exclusion and discrimination of students with disabilities in the higher education institutions. The main objective of this article is to explore the status of disability inclusion in higher education and strategies for its realisation, using evidence from Emong’s study, workshop proceedings where the authors facilitated and additional individual interviews with four students with disabilities by the authors.


Results: The results show that there are discrimination and exclusion tendencies in matters related to admissions, access to lectures, assessment and examinations, access to library services, halls of residence and other disability support services.

 

Conclusion: The article recommends that institutional policies and guidelines on support services for students with disabilities and special needs in higher education be developed, data on students with disabilities collected to help planning, collaboration between Disabled Peoples Organisations (DPO’s) strengthened to ensure disability inclusion and the establishment of disability support centres.

Disability and social justice

MLADENOV, Teodor
2016

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This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

School toilets: queer, disabled bodies and gendered lessons of embodiment

SLATER, Jenny
JONES, Charlotte
PROCTER, Lisa
2016

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In this paper we argue that school toilets function as one civilising site [Elias, 1978. The Civilising Process. Oxford: Blackwell] in which children learn that disabled and queer bodies are out of place. This paper is the first to offer queer and crip perspectives on school toilets. The small body of existing school toilet literature generally works from a normative position which implicitly perpetuates dominant and oppressive ideals. We draw on data from Around the Toilet, a collaborative research project with queer, trans and disabled people (aroundthetoilet.wordpress.com) to critically interrogate this work. In doing this we consider ‘toilet training’ as a form of ‘civilisation’, that teaches lessons around identity, embodiment and ab/normal ways of being in the world. Furthermore, we show that ‘toilet training’ continues into adulthood, albeit in ways that are less easily identifiable than in the early years. We therefore call for a more critical, inclusive, and transformative approach to school toilet research.

Childhood disability population-based surveillance: Assessment of the Ages and Stages Questionnaire Third Edition and Washington Group on Disability Statistics/UNICEF module on child functioning in a rural setting in South Africa

VISSER, Marieta
NEL, Mariette
BRONKHORST, Caretha
BROWN, Lara
EZENDAM, Zaskia
MACKENZIE, Kira
VAN DER MERWE, Deidré
VENTER, Marné
2016

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Background: Epidemiological information on childhood disability provides the basis for a country to plan, implement and manage the provision of health, educational and social services for these vulnerable children. There is, however, currently no population-based surveillance instrument that is compatible with the International Classification of Functioning, Disability and Health (ICF), internationally comparable, methodologically sound and comprehensively researched, to identify children under 5 years of age who are living with disability in South Africa and internationally. We conducted a descriptive pilot study to investigate the sensitivity and specificity of translated versions of the Ages and Stages Questionnaire Third Edition (ASQ-III) and the Washington Group on Disability Statistics/UNICEF module on child functioning (WG/UNICEF module) as parent-reported measures. The aim of our study was to identify early childhood disabilities in children aged 24–48 months in a rural area of South Africa, to determine the appropriateness of these instruments for population-based surveillance in similar contexts internationally.

 

Methods: This study was conducted in the Xhariep District of the Free State Province in central South Africa, with 50 carers whose children were registered on the South African Social Security Agency (SASSA) database as recipients of a grant for one of the following: Care Dependency, Child Support or Foster Care. The researchers, assisted by community healthcare workers and SASSA staff members, conducted structured interviews using forward–backward translated versions of the ASQ-III and the WG/UNICEF module.


Results: Both measurement instruments had a clinically meaningful sensitivity of 60.0%, high specificity of 95.6% for the ASQ-III and 84.4% for the WG/UNICEF module, and the two instruments agreed moderately (Kappa = 0.6).

 

Conclusion: Since the WG/UNICEF module is quicker to administer, easier to understand and based on the ICF, it can be considered as an appropriate parent-reported measure for large-scale, population-based as well as smaller, community-specific contexts. It is, however, recommended that future research and development continues with the WG/UNICEF module to enhance its conceptual equivalence for larger-scale, population-based studies in South Africa and internationally.

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

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Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

ZUURMOND, Maria
NYAPERA, Velma
MWENDA, Victoria
KISIA, James
RONO, Hilary
PALMER, Jennifer
2016

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Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.


Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.


Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.


Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

Concurrent Validity of Mobility Disability Scale among Community-dwelling Individuals

Manikandan, Natarajan
Kumar, K B
Rajashekhar, B
2016

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Purpose: A new Mobility Disability Scale (MDS) has been developed to assess the level of mobility disability among community-dwelling individuals. For it to be used effectively, a systematic evaluation of the psychometric properties isrequired. This study was conducted to determine the concurrent validity of the MDS among community-dwelling individuals, as compared to the Functional Independence Measure (FIM) and Functional Assessment Measure (FAM).

 

Method: Based on the survey of a semi-urban community, purposive sampling was used to select 52 individuals with mobility disability. All of them were evaluated using MDS and FIM FAM scales at the same time. Spearman’s Rankcorrelation coefficient was used to analyse the correlation of MDS scores with the FIM FAM scale scores.

 

Results: MDS scores had statistically significant negative correlation with FIM FAM total scale scores (r= -0.711) and the correlation was stronger when analysed with the mobility components of FIM FAM scales (r= -0.724).

 

Conclusion: The MDS possesses moderate concurrent validity with an existing functional scale. This indicates that it may be a suitable tool to quantify the level of mobility disability in persons with disability living in community.

 

Limitation: The psychosocial domain, though important, could not be compared with any gold standard measures due to unavailability of suitable scales.

An adult learning perspective on disability and microfinance: The case of Katureebe

NUWAGABA, Ephraim L
RULE, Peter N
2016

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Background: Despite Uganda’s progress in promoting affirmative action for persons with disabilities and its strategy of using microfinance to fight poverty, access to microfinance services by persons with disabilities is still problematic due to barriers, characterised by discrepancies between policies and practices. Regarding education, the affirmative action in favour of learners with disabilities has not translated into actual learning opportunities due to personal and environmental barriers.


Objectives: The study on which this article is based investigated the non-formal and informal adult learning practices regarding microfinance that persons with disabilities engaged in. This article seeks to illuminate the barriers that a person with a visual impairment encountered while learning about and engaging with microfinance and the strategies that he developed to overcome them.


Methods: This was a case study, framed within the social model of disability and critical research paradigm. Data were collected through in-depth interviews of a person with visual impairment and observations of the environment in which adult learning and engagement with Savings and Credit Cooperative Organisations (SACCOs) occurred.


Results: Findings indicate that the person with a visual disability faced barriers to learning about microfinance services. He experienced barriers in an integrated manner and developed strategies to overcome these barriers. The barriers and strategies are theorised using the social model of disability.


Conclusion: The case of a person with visual impairment suggests that persons with disabilities face multiple barriers regarding microfinance, including social, psychological and educational. However, his own agency and attitudes were also of importance as they influenced his learning. Viewing these barriers as blockades can lead to non-participation in learning and engagement with microfinance whereas viewing them as surmountable hurdles can potentially motivate participants to succeed in learning about and engaging with microfinance.

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