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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.

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

Development process in Africa: Poverty, politics and indigenous knowledge

EIDE, Arne H
KHUPE, Watson
MANNAN, Hasheem
2014

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Background: Persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. Still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised.

 

Objectives: The main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination.

 

Method: This article aimed at integrating three papers on the above topics presented at the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) Symposium. The researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice.

 

Results: The article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. Secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. Thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture.

 

Conclusion: A critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. Not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level.

Disability and the League of Nations: the Crippled Child’s Bill of Rights and a call for an International Bureau of Information, 1931

GROCE, Nora
2013

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In Disability Studies the evolution of conceptual models is often portrayed as linear, with a nineteenth-century charity model shifting to the medical model that dominated disability discourse in the twentieth century. This is then assumed to be largely unchallenged until the 1970s, when an emergent Disability Rights Movement re-framed issues into the social model, from which evolved a rights-based model. This paper documents two early efforts to address disability issues submitted to the League of Nations: the Crippled Child’s Bill of Rights in 1931 and a ‘Memorial’ requesting the establishment of an International Bureau of Information on Crippled Children in 1929. Neither submission achieved its stated goals, yet both reflect early attempts to place disability within wider social contexts.

COVID 19 and the disability movement

INTERNATIONAL DISABILITY ALLIANCE (IDA)

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In the light of the COVID19 pandemic and with the aim to support a disability-inclusive response to the crisis, International Disability Alliance (IDA) has launched this hub-page to share the most recent updates and resources as they become available.

 

Links are provided to resources from IDA members, partners, by disability constituency, by United Nations system and by country. Recommendations are also available. 

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