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Research for all: making research inclusive of people with disabilities

CBM-NOSSAL PARTNERSHIP FOR DISABILITY INCLUSIVE DEVELOPMENT
RESEARCH FOR DEVELOPMENT IMPACT NETWORK
July 2020

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Developing programs to be inclusive of people with disabilities ensures that all people benefit. Acknowledging and understanding the lived experiences of people with disabilities is essential in changing the paradigm that development programs ‘do to’ or ‘do for’ a specific vulnerable and marginalised portion of the community. It addresses issues of equity and of development effectiveness.

 

This guidance provides tools and resources for practitioners, researchers and policymakers for any and all forms of research, or evaluation with human participants, to ensure best-practice. This guide is for ensuring that all people with disabilities within the population or community are not excluded (either purposefully or accidentally, through poor planning or inexperience) in doing development research or evaluation. The guide is not specifically designed for those doing research or projects solely focusing on people with disabilities.

 

This guide is divided into three sections for addressing and implementing good practice in development research.

 

Section One sets out the fundamental principles and ethical considerations of disability-inclusive development (DID) research. This includes an overview of the rights-based approach to disability, and its guidance in shaping development.
Section Two discusses the ethical considerations for designing inclusive research questions and methods, including when working with children with disabilities. This involves enabling and obtaining informed consent.
Section Three details the key steps and processes for ethically involving people with disabilities throughout the four main phases of the research process: planning, design, implementation, and dissemination.

Inclusion and education: All means all. Global Education Monitoring (GEM) report 2020

GLOBAL EDUCATION MONITORING REPORT TEAM
June 2020

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The 2020 GEM Report assesses progress towards Sustainable Development Goal 4 (SDG 4) on education and its ten targets, as well as other related education targets in the SDG agenda. The Report also addresses inclusion in education, drawing attention to all those excluded from education, because of background or ability. The Report is motivated by the explicit reference to inclusion in the 2015 Incheon Declaration, and the call to ensure an inclusive and equitable quality education in the formulation of SDG 4, the global goal for education. It reminds us that, no matter what argument may be built to the contrary, we have a moral imperative to ensure every child has a right to an appropriate education of high quality.

The Report also explores the challenges holding us back from achieving this vision and demonstrates concrete policy examples from countries managing to tackle them with success. These include differing understandings of the word inclusion, lack of teacher support, absence of data on those excluded from education, inappropriate infrastructure, persistence of parallel systems and special schools, lack of political will and community support, untargeted finance, uncoordinated governance, multiple but inconsistent laws, and policies that are not being followed through.

Inclusion Works Uganda Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Uganda?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Uganda, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Uganda. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Kenya?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Kenya, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Kenya. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Bangladesh?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Bangladesh, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This situational analysis (SITAN) synthesises the most recent existing literature and evidence (drawing on government and non-government sources available online) about Bangladesh generally and on factors relating to persons with disabilities involvement in formal employment.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Nigeria?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Nigeria, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Disability Inclusive Development - Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Kenya?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Kenya. It will be helpful for anyone interested in disability inclusion in Kenya, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Nepal Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nepal?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nepal. It will be helpful for anyone interested in disability inclusion in Nepal, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Tanzania Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Tanzania?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Tanzania. It will be helpful for anyone interested in disability inclusion in Tanzania, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Bangladesh?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Bangladesh. It will be helpful for anyone interested in disability inclusion in Bangladesh, especially in relation to stigma, employment, education, health, and humanitarian issues.

Disability Inclusive Development - Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nigeria?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nigeria. It will be helpful for anyone interested in disability inclusion in Nigeria, especially in relation to stigma, employment, education, health, and humanitarian issues.

Accountability, feedback & complaints mechanisms in humanitarian responses to migration

KAHN, Clea
June 2020

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This guidance aims to give humanitarian actors a guidance for developing their accountability mechanisms in the context of mixed migration, with a focus on complaints and feedback mechanisms. Excellent guidance already exists on how to implement feedback and complaint mechanisms in humanitarian contexts, and this is not intended to replace or duplicate those. It should be read as a supplement, to provide additional reflection for humanitarian actors working in migration contexts.

The development of this guidance was based on a review of existing literature, including research studies, guidelines and training materials. More than 30 interviews were conducted with representatives of more than 20 organisations working in Africa, the Americas, the Middle East and Europe. Particular support was received from Start Network’s MERF member organisations.

Addressing barriers to employment for people with disabilities: evidence and lessons learned. Disability Inclusion Helpdesk Research Report No. 41

MEANIE-DAVIS, Jessie
COE, Sue
June 2020

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This work was carried out to answer the query: “What is the evidence available on interventions that effectively address the barriers to people with disabilities accessing and maintaining employment (decent work) in the agriculture and manufacturing sectors in low and middle income countries?”.

This paper provides an overview of findings from evaluations, research, and case studies on programmes that seek to address barriers to employment for people with disabilities in low and middle income countries (LMICs). There is extremely limited evidence available on this subject, particularly from mainstream agriculture, livelihoods and employment programmes. Almost all of the evidence available is from programmes with a specific focus on disability inclusion. Due to the lack of evidence available from interventions specifically focused on employment in the agriculture and manufacturing sectors, the scope of this query was expanded to include evidence from employment programmes that are not specific to one sector

This rapid evidence review identified three common programme approaches that seek to address different combinations of these barriers by working with different stakeholder groups: Single intervention approaches; Supply and demand approaches; and Systems approaches.

Multifaceted interventions show limited impact on community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries (USA, China, Germany, Italy, Australia) with the majority from USA (10).

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

A total of 15 studies using a multifaceted intervention were included in this review. Of these, nine were randomized and six were quasi-experimental. Study participants were adults, 18 years or older, with a disability, who had exited secondary school services. Participants identified as having the following disabilities: intellectual disability, mental illness, traumatic brain injury, aging-related disabilities (e.g., dementia, Alzheimer’s, reduction in activities of daily living), or combinations of two or more classifications.

 

Campbell Systematic Reviews. 2020;16:e1092.

https://doi.org/10.1002/cl2.1092

Disability Inclusion Helpdesk Report No: 38 : Disability and Child Marriage

MEANEY-DAVIS, Jessie
LEE, Harri
ANDRAE, Karen
May 2020

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Summaries on the findings from the following queries:

Is there evidence that suggests children with disabilities are more/less vulnerable to child marriage than children without disabilities? If yes, what are the driving factors for this?

What are some of the evidence-based interventions we could think about to ensure that children with disabilities affected by child marriage are not left behind? How can we better mainstream disability inclusion in the programme? 

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

COVID-19 blog series

SDDirect
April 2020

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The principal aim of this COVID-19 Blog series is to inspire and support the international community to identify, prioritise and respond to the needs of the most vulnerable individuals and nations as part of both the immediate humanitarian response and long-term recovery planning

Blogs include:

  • Recommendations for a disability-inclusive response to COVID-19 (Print and Audio)
  • Why people with disabilities are disproportionately impacted by COVID-19 (Print and Audio)

COVID-19 and Humanitarian Crisis

2020

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A COVID-19 Humanitarian platform to gather, curate, analyze, interpret and disseminate COVID-19-specific and -sensitive interventions that are being implemented in a variety of humanitarian settings.

The goal is to facilitate the sharing of context-specific field experiences about how humanitarian programs are responding to and being adapted to the COVID-19 pandemic. This website will host both technical guidelines as well as operational field experiences from humanitarian actors in different settings.

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