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Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Training of Mid-Level Rehabilitation Workers for Community-Based Rehabilitation Programmes

GHOSH, R
PALANIVELU, V
TEBBUTT, E
DEEPAK, S
2021

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Purpose: There is a lack of trained rehabilitation professionals, especially in the small towns and rural areas of low and middle income countries. In India, a cadre of mid-level rehabilitation workers, the Rehabilitation Therapy Assistants (RTAs), are being trained by Mobility India, a Non-Governmental Organisation (NGO). This paper aims to assess impact of their training and experiences after the training.

 

Method: Data were collected from 3 different initiatives connected with the trained RTAs: an impact assessment of their training; interviews with RTAs during an evaluation; and a survey of 188 RTAs trained between 2002 and 2019.

 

Results: RTAs were shown to have good skills to provide rehabilitation interventions in the field and are appreciated by clients and other stakeholders. Most of the RTAs work for NGOs in CBR programmes, and in private hospitals and clinics. There does not seem to be a role for them in government services in most countries. The number of trained RTAs remains small in spite of the large needs. This may be due to lack of an accreditation system for RTAs and the low priority given to rehabilitation services in general in some countries.

 

Conclusions: The results provide useful information to strengthen RTA training courses. Training RTAs to provide rehabilitation services in smaller towns and rural areas of low and middle income countries can have a good impact through CBR programmes. However, this impact remains circumscribed to small areas where NGOs are active. Changes are needed in health systems for the inclusion of mid-level rehabilitation workers in primary health care services.

Community-Based Rehabilitation programming for sex(uality), sexual abuse prevention, and sexual and reproductive health: A scoping review

SCHINDELER, Tamara Lee
ALDERSEY, Heather
2019

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Purpose: The United Nations Convention on the Rights of Persons with Disabilities aims to protect the human rights and dignity of all people with disabilities. In low-and middle-income countries (LMICs), one way this goal is pursued is through Community-Based Rehabilitation (CBR), a strategy to support the full and equal participation of people with disabilities. In spite of policy and community-based interventions, people with disabilities continue to experience inequities in many areas of life - one of these being their sexual and reproductive health (SRH) rights. This scoping review explored the literature to understand how CBR programming has supported sex(uality), sexual abuse prevention, and SRH for people with disabilities.

 

Methods: Arksey and O’Malley’s (2007) framework was used to identify relevant studies in academic and grey literature. This included six databases, the WHO website, and five Regional CBR Network websites. Relevant studies were selected using criteria and data was charted to examine the quantity, variation, and nature of CBR interventions.

 

Results: Fifteen studies were identified. The majority were implemented in Africa; targeted all people with disabilities, regardless of gender, age, or type of disability; and frequently focussed on the topic of HIV/AIDS.  The interventions were most commonly designed to educate people with disabilities on issues of sex(uality), sexual abuse prevention, or SRH.

 

Conclusion: A number of studies discussed CBR programmes that aim to support sex(uality), sexual abuse prevention and SRH for people with disabilities, yet gaps were identified that indicate that certain populations and topics are being overlooked by CBR interventions.

 

Implications: CBR practitioners can focus on filling the gaps identified in this review through future programming. Further action must concentrate on implementing a variety of CBR Matrix strategies to address comprehensive issues related to sex(uality), sexual abuse prevention, or SRH.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Disability Inclusive Development Good Practices: Level of Commitment to Core Concepts of Human Rights

HENDERSON, Cheryl
MANNAN, Hasheem
POWER, Jessica
2017

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Aim: Good practices have been documented by International Non-Governmental Organisations (INGOs) to promote disability inclusive development and encourage the replication or scaling up of good practices that use rights based approaches. This study aimed to investigate the extent to which Core Concepts of human rights are illustrated in disability inclusive development good practices related to health.

 

Methods: This study analysed case studies of disability inclusive development good practices focusing on health that are available in the public domain using EquiFrame, an established content analysis framework in benchmarking health and social policies.

 

Results: A total of 42 health related good practices were identified from 3 different INGOs working in the field of disability inclusive development. The highest occurring human rights Core Concepts were; access 55%, individualised services 48%, capacity building 45% and participation 38%. The Core Concepts with the lowest levels of commitment were; autonomy 3%, cultural responsiveness 3%, accountability 3%, and efficiency 3%. Privacy and autonomy were not mentioned at all. The quality of reporting of the core concepts of human rights was low as they did not state specific programme actions or intentions to monitor Core Concepts.

 

Conclusion: Level of commitment to Core Concept coverage and quality of reporting was low. EquiFrame was successfully extended to analyse disability inclusive development good practices focusing on health. Its use in further analysis of inclusive good practice is advised.

 

Implications: These results can be used for advocacy in disability inclusive development and to guide programme staff training and documentation of disability inclusive development good practices.

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.

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal

Vaughan, Kelsey
Thapa, Aradhana
2016

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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

 

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

 

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

 

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education

Elphick, Jean
De SasKropiwnicki, Zosa
Elphick, Rosalind
2016

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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.

 

Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.

 

Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.

 

Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured. 

 

In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.

China’s Mental Health Law: Analysis of Core Concepts of Human Rights and Inclusion of Vulnerable Groups

Hussey, Meghan Marie
Mannan, Hasheem
2016

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Purpose: The aim of this research is to assess China’s first Mental Health Law in terms of Core Concepts of Human Rights and equitable coverage of Vulnerable Groups.

 

Methods: The EquiFrame analytical tool provided the framework for evaluation of the inclusion of Core Concepts of Human Rights as well as Vulnerable Groups in the Law.

 

Results: China’s Mental Health Law scored 83% for Core Concept coverage, with a Core Concept Quality score of 76%. The Law had a 42% score for Vulnerable Groups coverage. This gave the Law an overall score of “Moderate” in terms of Human Rights coverage.

 

Conclusions: China’s Mental Health Law is a landmark document providing the country’s first ever legal framework for mental health. While the Law scores high on level commitment in Core Concepts of Human Rights, the potential for equitable protection would be enhanced by increased inclusion of Vulnerable Groups.

 

Limitations: Further analyses of health and social policies in the People’s Republic of China from a Human Rights perspective would provide a deeper understanding of the Law in context.

Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods

Zuurmond, Maria A
Mahmud, Ilias
Polack, Sarah
Evans, Jenny
2015

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Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions.

 

Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.

 

Methods: The study used mixed methods. The PedsQLTMFamily Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012.

 

Results: The mean overall and sub-scale PedsQLTM scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.

 

Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.

Financial Access to Healthcare among Persons with Disabilities in the Kumasi Metropolis, Ghana

Badu, Eric
Opoku, Maxwell Peprah
Appiah, Seth Christopher Yaw
Agyei-Okyere, Elvis
2015

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Purpose: According to the World Health Organisation, 10% to 15% of the population of every developing country lives with disability. This amounts to about 2.4 - 3.6 million Ghanaians with disability. Since their contribution is important for the development of the country, this study aimed to assess the financial access to healthcare among persons with disabilities in the Kumasi Metropolis of Ghana.

 

Methods: A cross-sectional study, involving administration of a semi- structured questionnaire, was conducted among persons with all kinds of disabilities (physically challenged, hearing and visually impaired) in the Kumasi Metropolis. Multi-stage sampling was used to randomly select 255 persons with disabilities from 5 clusters of communities - Oforikrom, Subin, Asewase, Tafo and Asokwa. Data analysis involved descriptive and analytical statistics at 95% CI using SPSS software version 20.

 

Results: There were more male than female participants, nearly one-third of them had no formal education and 28.6% were unemployed. The average monthly expenditure on healthcare was GHC 21.46 (USD 6.0) which constituted 9.8% of the respondents’ income. Factors such as age, gender, disability type, education, employment, and whether or not they stayed with family members had significant bearing on the average monthly expenses on healthcare (p<0.05).Transportation cost, the travel distance to facilities, and the regular sources of payment for healthcare, had significant relationship with access to healthcare (p<0.05). Although about 63.5% of the respondents used the National Health Insurance Scheme as the regular source of payment for healthcare, 94.1% reported that sources of payment did not cover all their expenses and equipment.

 

Conclusion: Financial access to healthcare remains a major challenge for persons with disabilities. Measures to finance all healthcare expenses of persons with disabilities are urgently needed to improve their access to healthcare.

Towards an Inclusive Society in Cameroon: Understanding the Perceptions of Students in University of Yaounde II about Persons with Disabilities

Opoku, Maxwell Peprah
Badu, Eric
Moitui, oash Ntenga
2015

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Purpose: Disability cuts across every society and all spheres of life. For an inclusive society, it is important to understand people’s perceptions about persons with disabilities. However, there seems to be limited information, particularly about the perceptions of students who are the generation of future policy-makers. This study examines the perceptions of students in the University of Yaoundé II about persons with disabilities in Cameroon.

 

Methods: A cross sectional study design using quantitative methods was employed with a sample of students at the University of Yaoundé II. A questionnaire was used to gather information from 500 students selected by simple random sampling. The data analysis involved descriptive and inferential statistics at 95% CI.

 

Results: Among the participants, 51.8% were males, 89.2% were single and the average age was 24.9 years. Findings showed that 69.8% did not know about the actual population of persons with disabilities in Cameroon, though 14.6% had relatives with disabilities. None of the students perceived disability as a contagious condition, and 79.8% agreed that education had influenced their perceptions about persons with disabilities. Gender and education level had significant relationship with changes in perception (OR=1.8; p=0.01 and OR=1.91; p=0.04). However, 13.5% were unwilling to work with a person with disability in the future.

 

Conclusion: The findings suggest that issues of disability have not been taken into consideration in Cameroon. Therefore, there is the need for education and sensitisation of the general population towards disability. Additionally, policy- makers should factor persons with disabilities into national strategic plans, in order to ensure an inclusive society.

A Transect Walk to Establish Opportunities and Challenges for Youth with Disabilities in Winterveldt, South Africa

LORENZO, T
MOTAU, J
2014

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Winterveldt was one of the 9 sites included in a national study to determine the livelihood strategies of youth with disabilities, undertaken by the Occupational Therapy Departments of 6 Universities in South Africa. Community-based rehabilitation (CBR) programmes were initiated in Winterveldt in the 1990s by non-governmental organisations and the Occupational Therapy Department at the University of Limpopo - Medical University of South Africa (MEDUNSA).

 

Purpose: This paper describes the use of a Transect Walk to identify aspects of context that contribute to the vulnerability of youth with disabilities with regard to their livelihood strategies.

 

Method: Transect Walk was employed as a participatory rapid-appraisal tool to gather data. Convenience sampling was used to identify 11 participants, including three youth with disabilities. Field notes and observations were analysed deductively for themes related to the 5 categories of livelihood assets.

 

Results: The findings describe the natural and built environment, the access to health, educational and financial services, and the social attitudes of people in this community towards youth with disabilities. The discussion uses the 5 CBR components as a framework to explore strategies for enhancing the assets of youth with disabilities, namely, empowerment, social, health, education, and livelihood.

 

Conclusions: There is significant development that could be maximised if youth with disabilities were aware of their rights and were able to access services and resources. The implication for local government is to create an inclusive environment in which youth with disabilities are able to participate in mainstream youth development opportunities.

Violence Against Persons with Disabilities in Bidar District, India

DEEPAK, S
KUMAR, J
SANTOSH, B
GORNALLI, S
MANIKAPPA, P
VYJANTHA, U
GIRIYAPPA, R
2014

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Violence and sexual violence against persons with disabilities at community level are serious issues. Though CBR programmes and DPOs are expected to prevent violence and offer support to the victims, there is very little informationabout their role in this regard.

 

Purpose: This research aimed to assess the level of violence and sexual violence experienced by DPO members, and the role played by CBR programmes in preventing it.

 

Method: The study involved a non-random consecutive sample of 146 persons with disabilities from 3 sub-districts of Bidar district in Karnataka, India. Using a structured questionnaire, interviews were conducted by a group of trained DPO members and CBR workers, many of whom had personal experience of violence. The data was entered using Epi-Info and then converted into spreadsheet Tables for analysis.

 

Results: 58% of the sample reported having experienced violence and 14% reported experiences of sexual violence during the previous 12 months. Girls and women reported higher levels of violence at different age groups. Male children and young adults reported having experienced more violence, including sexual violence, than older men. The research did not provide conclusive evidence that participation in the CBR and DPO activities played a protective role.

 

Conclusions: Violence and sexual violence against persons with disabilities are serious problems. More research on the subject, in terms of roles of CBR programmes and DPOs, is needed.

Empowerment in Community-based Rehabilitation and Disability-inclusive Development

KUIPERS, P
2014

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Purpose: This paper seeks to contribute to discussion on the understanding and measurement of empowerment of people with disabilities in developing countries. A novel, text analysis approach was used to depict the way in which empowerment is characterised in conventional measures in Western settings. This was then compared with depictions and analyses of the way in which empowerment is characterised in documents that have more relevance to developing countries.

 

Method: First, computer-based content and concept analysis was applied to three key empowerment measures. This was compared with analysis of responses to a recent online survey of empowerment conducted by the United NationsDepartment of Economic and Social Affairs (UN-DESA). Visual representations in the form of “word clouds” were generated to depict key concepts within each data source. Second, to provide specific detail regarding how empowerment has been described in documents which relate to developing countries, more detailed computer-assisted lexical analysis was performed on the text of responses to the UN-DESA survey, and on the text of the Empowerment component of the CBR Guidelines.

 

Results: Initial “word clouds” illustrated considerable discrepancy between concepts inherent in the three most relevant empowerment measures when compared with responses to the UN-DESA survey relating to empowerment in a development context. Subsequent lexical analysis depicted greater specificity and ranked the concepts associated with empowerment in key disability and development-related documents.

 

Conclusions: Conventional Western measures of individual empowerment may not adequately encompass the broader social, economic and community orientation of empowerment as described in documents from disability and development circles. Further research is required to substantiate these novel and speculative indications.

India’s Disability Policy – Analysis of Core Concepts of Human Rights

O'DOWD, J
MANNAN, H
MCVEIGH, J
2014

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Purpose: To analyse India’s National Policy for Persons with Disabilities (2006), using a Human Rights approach.

 

Method: A framework analysis was carried out using EquiFrame, which analyses policies for inclusion and quality of Core Concepts of Human Rights and inclusion of Vulnerable Groups.

 

Results: India’s National Policy for Persons with Disabilities scored 67% for Core Concept Coverage, 24% for Core Concept Quality and 42% for Vulnerable Group Coverage. This gave the policy an overall ranking of Low quality.

 

Conclusions: The current policy for persons living with disabilities in India would benefit from being updated to encompass the Core Concepts of Human Rights.

Inclusive Education in Bangladesh: Are Pre-service Teachers Ready to Accept Students with Special Educational Needs in Regular Classes?

MALAK, M S
2013

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Purpose: The aim of this study was to examine pre-service special education (PSpE) teachers’ attitudes towards inclusive education (IE) for students with special educational needs (SEN) in Bangladesh.

 

Method: 100 PSpE teachers from a leading teacher education institute in Bangladesh were purposively sampled. A 20-item based survey questionnaire was used to measure participants’ attitudes. Items of the survey were developed from a literature review in which Attitudes Towards Inclusive Education Scale (ATIES) by Wilczenski (1992), Concern about Inclusive Education Scale (CIES) by Sharma and Desai (2002), and Interaction with Persons with a Disability (IPD) Scaled by Gething (1994) were considered as the key specialist resources. Both descriptive and inferential statistics were utilised in the analysis.

 

Results: The results revealed that while the PSpE teachers hold favourable attitudes towards students with SEN, they are concerned about some basic issues of inclusion. Practicum and close contact with children with SEN were found to be important variables which shaped the attitudes of the PSpE teachers. Implications of the findings are discussed and further suggestions are made as to how teacher education institutes may engage PSpE teachers more effectively with their programmes to promote better inclusive practices.

 

Conclusion: The study suggests that there is a need for providing PSpE teachers with experiential learning prior to school practicum.

A Comparative Analysis of Institutional Capacities for Implementing Disability Policies in East African Countries: Functions of National Councils for Disability

YOKOYAMA, A
2012

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During the “African Decade of Persons with Disabilities (2000-2009)”, East African countries witnessed significant achievements, especially in the development of law, collection of statistics and in funding. However, many persons with disability are still marginalised from opportunities in education, healthcare and employment.

 

Purpose: With the pre-supposition that the lack of institutional capacities for implementing disability policies is the one major stumbling-block which hinders widespread delivery of social services to persons with disabilities in low-income countries, this study makes a comparative analysis of institutional capacities in the disability sectors of Uganda, Kenya and Tanzania.

 

Method: The research methods adopted were a literature survey and a field survey. The framework for analysis consists of: 1) capacities and functions of disability units in central governments, 2) relationships between central and local governments in the disability sector, and 3) relationships between governments and organisations of persons with disability (DPOs). Special attention is paid to the status, roles and functions of national councils for disability (NCDs), the independent statutory bodies recently established in each of the three countries, with clear authority and duties for the implementation of disability policies. The NCDs enable multi-sectoral stakeholders to be involved in the implementation of disability policies; therefore, positive relationships between the governments and DPOs are essential for the smooth functioning of the NCDs.

 

Results: While the result of the field survey in Tanzania reveals several effective approaches for the smooth operation of the NCD, further study is needed to verify whether these approaches would be applicable to other East African countries such as Kenya and Uganda.

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