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A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

COVID-19, Amplifying Voices: Our Lives, Our Say: Learning from COVID-19 through the experiences of blind and partially sighted persons across the world

ZAYED, Yana
et al
August 2020

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The World Blind Union (WBU) conducted a study to examine the extent to which COVID-19 pandemic has exposed some deep structural inequalities in society. Data gathered from the study is evidencing that persons with disabilities, older persons, and persons from lower socioeconomic status backgrounds are among those hardest hit by the pandemic. While this report puts a spotlight on the voices of blind and partially sighted persons, many of the experiences shared strongly resonate with numerous other studies that are also highlighting how marginalised groups have been affected by this crisis. Through this report, WBU hopes to raise awareness on the specifics of what those challenges have meant in reality for its constituents, as well as shed light on what have been effective resilience strategies for them. The study was made possible with the support of CBM Global

To understand the situation of our constituents, the World Blind Union (WBU) conducted a global survey in collaboration with key stakeholders. In April 2020, the WBU launched an open online survey for seven weeks in Spanish, French and English, seeking information from blind and partially sighted persons on how COVID-19 was impacting their day to day life. 853 people participated in the survey. The respondents expressed in their own words how their lives had been and continue to be impacted by the coronavirus pandemic. This report is a compilation of those voices. It depicts the ways in which COVID-19 response measures taken by state and non-state actors have created additional barriers and challenges for blind and partially sighted people. It also includes powerful testimonies on how people have shown resilience in the face of adversity.

 

 

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

How can social protection responses to COVID-19 be made disability inclusive?

BANKS, Lena Morgon
HUNT, Xanthe
June 2020

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Question & problem

The COVID-19 pandemic and strategies essential for its containment are resulting in severe strains on economies, particularly in low- and middle-income countries (LMICs). These impacts will be felt most by groups already in or at risk of poverty, including the estimated 1 billion people with disabilities globally. Interventions to address the short- and long-term economic effects of the pandemic are urgently needed. Some countries have begun implementing or announced plans for interventions addressing the economic impacts of COVID-19, such as food assistance, emergency cash transfers, unemployment assistance or expansions to existing social protection programmes. As these programmes are developed, it is important to consider the extent to which their design and delivery is inclusive of people with disabilities. Failure to adequately include people with disabilities in this process will lead to widening inequalities.

Coronavirus (COVID-19) - Cochrane resources and news

2020

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Cochrane provides high-quality, relevant, and up-to-date synthesized research evidence to inform health decisions. This page highlights content relating to the coronavirus (COVID-19) pandemic and the various related activities that Cochrane is undertaking in response.

We will be continually adding updates and additions to this page. Sections include information and resources for:

 

  • Public, patients, and carers
  • Healthcare workers
  • Researchers
  • Policy and guideline developers
  • The Cochrane Community

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

What are the key considerations for including people with disabilities in COVID-19 hygiene promotion programmes?

WILBUR, Jane
HUNT, Xanthe
August 2019

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Question & problem

People with disabilities may be more likely to acquire COVID-19, and if infected may be more likely to experience serious symptoms, or die. Aside from those consequences of the pandemic related to morbidity and mortality, people with disabilities are often reliant on carers to aid with common daily tasks, and so social distancing measures may be unfeasible. Furthermore, safe water, sanitation and hygiene (WASH) services and facilities may be inaccessible to people with disabilities, and, in many settings, efforts to deliver services in a socially-distanced world have resulted in the roll out of digital or remote healthcare approaches which are sometimes not accessible or inclusive. One of the key interventions in response to the COVID-19 pandemic has been international attention, and improved funding, programming and media messaging in support of WASH. People with disabilities – who are most at risk of negative consequences of COVID-19 – most need access to such interventions. Yet, WASH access is considered to be one of the biggest challenges of daily life for many people with disabilities.

An amalgam of ideals – images of inclusion in the Salamanca Statement

MAGNÚSSON, Gunnlaugur
2019

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The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

A comparison of disability rights in employment: Exploring the potential of the UNCRPD in Uganda and the United States

OJOK, Patrick
GOULD, Robert
2019

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The disability employment policy systems in the US and Uganda are compared, and areas identified to improve implementation by examining the broader socio-cultural contexts that have shaped disability policy and practices of the two countries over time. Using the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) as the overarching analytical framework, the analysis is framed within the discussion of the right to employment, as both countries are recognized for policy advances in this domain, but continue to experience low labor market participation for persons with disabilities. It identifies three critical areas that impact the realisation of disability rights in each context: ideological frameworks; hiring and retention initiatives; and state level supports. Ultimately, it considers the limitations of the rights based framework for actualising employment rights in the context of limited state and individual resources. 

 

Disability and the Global South, 2019, Vol.6, No. 2

 

Systems thinking for assistive technology: a commentary on the GREAT summit

MACLACHLAN, Malcolm
SCHERER, Marcia J
2018

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The area of assistive technology has a long history of technological ingenuity and innovation. In order to ensure that the benefits of assistive technology are equitably distributed across the population and life course, it is necessary to adopt a systemic approach to the area. We describe examples of systems thinking and non-systems thinking across 10 Ps. These Ps are People (or users, as the primary beneficiaries of assistive technology), Policy, Products, Personnel, Provision (as key strategic drivers at systems level); and Procurement, Place, Pace, Promotion and Partnership (as key situational factors for systems). Together these Ps should constitute a framework for an “open” system that can evolve and adapt, that empowers users, inter-connects key components and locates these in the reality of differing contexts. The adoption of a stronger systems thinking perspective within the assistive technology field should allow for more equitable, more resilient and more sustainable assistive technology across high, middle- and low-income contexts and countries.

Disability and inclusive education - A stocktake of education sector plans and GPE-funded grants

BANHAM, Louise
PAPAKOSTI, Elena
et al
March 2018

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This report was commissioned by the Global Partnership for Education’s Secretariat to take stock of how disability and inclusive education are included in education sector plans in 51 countries, including GPE-funded programs, such as education sector program implementation grants, program documents, implementation progress reports education sector analysis, if applicable, and other relevant GPE program documents.

This report documents progress and highlights the need to step up support to GPE partner countries on disability and inclusive education, to improve consideration of issues around disability and inclusion in education sector analysis and sector planning processes to better promote the achievement of GPE 2020 strategic goal 2, and to fulfill the transformative vision of Agenda 2030

Yuin, Kamilaroi, Sámi, and Maori people’s reflections on experiences as ‘Indigenous scholars’ in ‘Disability Studies’ and ‘Decolonisation’

GILROY, John
UTTJEK, Margaretha
GIBSON, Chontel
SMILER, Kirsten
2018

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Disability research in Indigenous communities operates within a culture of academic neo-imperialism. There is a need to decolonise disability research on a global level. Limited knowledge exists on Indigenous disability researchers' experiences in the disability research academy and on Indigenous disability research methodologies. In part, this is due to the limited writings produced by Indigenous peoples on disability research and research methodologies. Four indigenous disability researchers, one from the Nordic Region and two from Australia, and one from New Zealand met during and after the 2017 Nordic Network on Disability Research conference and reflected on and discussed each other’s experiences as Indigenous disability researchers. This paper reports on these scholars’ reflections on comparing the research methodologies and experiences of their disability research. Findings highlight how although Indigenous peoples are from different tribes/nations and countries, there are similarities and differences between each of the Indigenous disability researcher’s approach to decolonisation in disability research. The paper concludes that Sami, Australian Aboriginal people, and Maori people can learn from each other to advance the decolonisation of disability research, service and policy, at local, national and international levels.

 

Disability and the Global South, 2018, Vol.5, No. 2

An intersection in population control: welfare reform and indigenous people with a partial capacity to work in the Australian northern territory

St GUILLAUME, Louise
THILL, Cate
2018

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In Australia, in the last decade, there have been significant policy changes to income support payments for people with a disability and Indigenous people. These policy reforms intersect in the experience of Indigenous people with a partial capacity to work in the Northern Territory who are subject to compulsory income management if classified as long-term welfare payment recipients. This intersection is overlooked in existing research and government policy. In this article, we apply intersectionality and Southern disability theory as frameworks to analyse how Indigenous people with a partial capacity to work (PCW) in the Northern Territory are governed under compulsory income management. Whilst the program is theoretically race and ability neutral, in practice it targets specific categories of people because it fails to address the structural and cultural barriers experienced by Indigenous people with a disability and reinscribes disabling and colonising technologies of population control.

 

Disability and the Global South, 2018, Vol.5, No. 2

Water justice, gender and disability : South Asian Water Studies (SAWAS), special issues, vol.5, no.4, June 2017

CLEMENT, Florian
NICOL, Alan
CORDIER, Sylvie
Eds
June 2017

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The papers in this volume on gender, persons with disabilities and WASH in South Asia help to provide important pointers on ways forward. A common thread throughout the four articles is that a constellation of challenges still exists, from 'exclusion' through prejudice at different levels, to institutional realities that render policy and other instruments ineffective in practice. In some cases, even, there remains a complete absence of key legal and policy instruments.  

Titles of the articles in this issue are: 

  • Planning for inclusion: exploring access to WASH for women and men with disabilities in Jaffna District, Sri Lanka
  • Breaking down Barriers: Gender and Disability in Access to Agricultural Water Management in Nepal
  • The Gender Gap between Water Management and Water Users: Evidence from Southwest Bangladesh​
  • Are policies enough to mainstream Gender in water and sanitation programs? Experiences from community managed drinking water supply schemes in India

The capacity of community-based participatory research in relation to disability and the SDGs

GREENWOOD, Margo
2017

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The 2030 Agenda pledges to foster shared responsibility, recognizes all as crucial enablers of sustainable development, and calls for the mobilization of all available resources. It also commits to multi-stakeholder partnerships and pledges to be open, inclusive, participatory and transparent in its follow-up and review. Community-based participatory research (CBPR) equitably involves community members, organizational representatives and researchers, enabling them to share power and resources through drawing on the unique strengths that each partner brings. It aims to integrate any increased knowledge and understanding into action, policy and social change to improve the health and quality of life of community members. CBPR involves recruiting community or peer researchers, involving them in planning and offering them training to undertake interviews and observations in their context. They are also part of the analysis and dissemination process, and continue to work with local partners on advocacy plans and events after projects and research have finished. People with disabilities are actively part of the research process throughout. Drawing on relevant literature and current CBPR disability research in East and West Africa, this paper puts forward CBPR as a methodology that can enable community members to identify key barriers to achieving the SDGs, and inform how policy and programmes can be altered to best meet the needs of people with disabilities. It demonstrates CBPR in practice and discusses the successes and complexities of implementing this approach in relation to the SDGs. The paper also highlights findings such as the high level of support needed for community research teams as they collect data and formally disseminate it, the honest raw data from peer to peer interaction, a deep level of local ownership at advocacy level, emerging issues surrounding meaningfully involving community researchers in analysis, and power differentials. A key conclusion is that to join partners with diverse expertise requires much planning, diplomacy, and critical, reflexive thought, while emphasising the necessity of generating local ownership of findings and the translation of knowledge into a catalyst for disability-related policy change.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Women and girls with disabilities. Committee on the Rights of Persons with Disabilities. General comment No. 3 (2016). Article 6.

OFFICE OF THE UNITED NATIONS HIGH COMMISSIONERS FOR HUMAN RIGHTS (OHCHR)
September 2016

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"International and national laws and policies on disability have historically neglected aspects related to women and girls with disabilities. In turn, laws and policies addressing women have traditionally ignored disability". "Article 6 serves as an interpretation tool to approach the responsibilities of States parties across the Convention, to promote, protect and fulfil the human rights of women and girls with disabilities, from a human rights-based approach and a development perspective". These general comments take the form of an introduction, normative content, states parties’ obligations, the interrelationship of article 6 with other articles of the Convention (perspectives of women with disabilities in CRPD provisions) and national implementation

Promoting good policy for leadership and governance of health related rehabilitation: a realist synthesis

MCVEIGH, Joanne
MACLACHLAN, Malcolm
GILMORE Brynne
MACLEAN Chiedza
EIDE, Arne H.
MANNAN Hasheem
GEISER Priscille
DUTTINE Anthony
MJI Gubela
MACAULIFFE Eilish
SPRUNT Beth
AMIN Mutamad
NORMAND Charles
et al
August 2016

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General principles requiring contextual adaptation regarding optimal policy related governance of health related rehabilitation in less resourced settings were developed from a literature review and realistic synthesis. A systematic review of literature published since 2003 was carried out. Multiple reviewers selected articles for inclusion in the realistic synthesis.  A Delphi survey of expert stakeholders refined and triangulated findings from the realist synthesis. Context mechanism outcome pattern configurations (CMOCs) were identified from the literature and then developed into statements for the Delphi survey, whereby 18 expert stakeholders refined these statements to achieve consensus on recommendations for policy related governance of health related rehabilitation. Several broad principles emerged throughout formulation of recommendations: participation of persons with disabilities in policy processes; collection of disaggregated disability statistics; explicit promotion in policies of access to services for all subgroups of persons with disabilities and service-users; robust inter-sectoral coordination; and ‘institutionalising’ programmes.

 

 

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