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Who is disabled? On whether the functional definition of disability targets the same individuals as the subjective definition

Judith Baart
Willem Elbers
Alice Schippers
May 2023

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With the increased attention to disability as a vulnerability criterion in the Sustainable Development Goals, international organizations and NGOs within the international development sector have started to pay explicit attention to persons with disabilities, including the collection of data on persons with disabilities. The Washington Group Short Set of Questions, which focuses on functional limitations, has been gaining popularity as an assessment tool for disability. This set of questions reflects a categorization of disability that does not necessarily correspond with subjective disability assessments, such as the yes/no question (“do you have a disability?”) which many development actors have used in their assessment tools when they collect disability data This study compares the subjective and the functional limitations assessment tools for disability to answer the question: do they identify the same individuals as persons with disabilities? Based on a survey carried out amongst persons with disabilities in Cambodia, we included both the Washington Group Short Set and a subjective question asking respondents to self-identify their disability type. We find that, although all respondents self-identified as disabled, not all respondents would be considered disabled according to the Washington Group Short Set of questions. In addition, there is little overlap between specific disability types according to a subjective classification method and the domains of functioning measured through the Washington Group methodology. Our findings affirm that categorization as abled or disabled depends on the tool used. This is important, as the assessment approach chosen by those collecting disability data can shape the design choices of policies and programs, and determine who benefits.

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.

Inclusive Governance sector guiding note on COVID-19

April 2020

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Humanity & Inclusion inclusive governance approach fits in with the governments (national, regional and local) context, governments are in charge of the response to the crisis. In these types of contexts, humanitarian actors do not have the leadership and mandate to make decisions. Governments are creating policies in response to Covid-19 and must include persons with disabilities as equal citizens within their response frameworks. 

Key messages :

  • DO NO HARM: Protect yourself and your family, staff, partners and of course the beneficiaries.
  • Work closely with other stakeholders and ensure coordination in the response is happening at all levels
  • Follow HI’s guidelines and the guidance from the national and local authorities regarding COVID 19 at all times. 

English pages 1-7 and français ci-dessous pages 7-13.

Disability inclusion helpdesk; evidence digest issue 1, June 2019

SDDirect
June 2019

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The Evidence Digest aims to capture knowledge emerging from Helpdesk activities in a systematic manner and disseminate findings. This short summary will:

Share information on and learnings from the Disability Inclusion Helpdesk over the last quarter, highlighting headline messages and implications for programmers and policymakers;
Share relevant information and learning from other DID outputs;
Provide relevant information on recent evidence, policy changes and events in the field of disability inclusion, and;
Raise awareness on how to access the Helpdesk and demonstrate its offer.

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.

Leaving no-one behind: using assistive technology to enhance community living for people with intellectual disability

OWUOR, John
LARKIN, Fiona
MacLACHLAN, Malcolm
April 2017

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The transformation of community care for people with intellectual disabilities (ID) through enhanced access to assistive technology (AT) is discussed. The problems associated with lack of access to AT and the extent to which these occur are reported. Issues in lack of AT provision, including lack of global standards, are discussed. A call to action is made with reference to the appropriate parts of CRPD.   

 

 

Disability and Rehabilitation: Assistive Technology, 12:5, 426-428

DOI: 10.1080/17483107.2017.1312572 

How to talk about disability and human rights

FRAMEWORKS INSTITUTE
March 2016

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"This MessageBrief summarises and comments on the framing strategies currently in use to communicate information about disability and human rights. The recommendations presented here are based on framing “best practices,” gleaned from more than 15 years of communications research on a wide range of social issues, and represent important opportunities for disability rights advocates to communicate more effectively". This brief reviews more than 55 communications materials sampled from 20 organisations involved in the disability rights field. Five primary framing strategies: Unframed Facts and Numbers, Description Instead of Explanation, Problems Without Solutions, Crisis Stories, and Vivid Cases in current communications are identified and 8 recommendations are presented. Gaps in existing research precluding the ability to make more specific reframing recommendations are identified.

Report on the implementation of the UN convention on the rights of persons with disabilities (CRPD) by the European Union

THE EUROPEAN UNION
June 2014

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This report covers the period of the entry into force of the Convention on the Rights of Persons with Disabilities (CRPD) for the European Union (EU)  in January 2011 to December 2013. It begins with a brief introduction to the institutions of the EU, and some key legal and structural information. The report then focuses on the key articles of the CRPD (articles 1 to 33) and provides details on the EU's strategy towards implementation, including discussion of the measures taken, and information on the relevant EU legislation. This report would be particularly useful to anyone interested in understanding how the EU has implemented the CRPD so far

Commission Staff Working Document

Brussels, 5.6.2014 , SWD(2014) 182 final

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.

The Convention on the Rights of Persons with Disabilities Training Guide : Professional Training Series No. 19

UNITED NATIONS HUMAN RIGHTS OFFICE OF THE HIGH COMISSIONER
2014

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These eight training modules are meant to “inform and empower those who are involved in ratifying, implementing and monitoring the two instruments. While the Training Guide is mainly targeted at facilitators of training courses on the Convention and its Optional Protocol, it acknowledges that each and every one of us has a role to play. I recommend wide dissemination of the training package, and its use by all those who want to embark upon the essential journey towards greater awareness and effective implementation of the rights of persons with disabilities and, ultimately, the building of an inclusive society for all.”

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.

Benefits and costs of e-accessibility : how economics and market forces can support e-accessibility and the convention on the rights of peoples' with disability

BURGER, Dominique
et al
March 2012

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This white paper seeks to document the innovative elements of a conference discussion about e-accessibility costs and benefits. Despite technological and political achievements, the economics of e-accessibility need to be understood. This paper aims to define new approaches to understand how best to promote e-accessibility models
E-Accessibility costs and benefits
Paris, France
28 March 2011

Convention document legal analysis : a legal commentary on the draft convention text produced by the working group for the UN Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dign

LANDMINE SURVIVORS NETWORK
2004

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The legal analysis of the draft convention text Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities is an exellent document explaining and commenting on the convention text. This document addresses both legal experts and people who need legal background information about the convention

African journal of disability

SWARTZ, Leslie
et al

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This journal "introduces and discusses issues and experiences relating to and supporting the act of better understanding the interfaces between disability, poverty and practices of exclusion and marginalisation. Its articles yield new insight into established human development practices, evaluate new educational techniques and disability research, examine current cultural and social discrimination, and bring serious critical analysis to bear on problems shared across the African continent"
One issue published per year

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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