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Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

Preparedness of civil society in Botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities

HANASS-HANCOCK, Jill
MTHETHWA, Nomfundo
MOLEFHE, Malebogo
KEAKABETSE, Tshiamo
2020

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Background: In low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. Non-governmental organisations (NGOs) and disabled people’s organisations (DPOs) can help to address this. However, in countries like Botswana we know little about the preparedness of NGOs and DPOs to increase inclusion in and access to programmes addressing violence.

 

Objectives: To explore the capacity and preparedness of NGOs and DPOs to ensure that women and girls with disabilities can participate in and access programmes addressing violence.

 

Methods: A qualitative study was undertaken using interviews with 17 NGOs and DPOs in Botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls.

 

Results: Both NGOs and DPOs lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. Some programmes address violence against women but lack skills and resources to accommodate people with disabilities. In contrast, DPOs work with people with disabilities, but lack focus on violence against women with disabilities. Participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking.

 

Conclusions: Botswana’s NGOs and DPOs are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. Training, resource allocation and participation of women with disabilities in NGOs and DPOs is needed to drive this change.

 

 

African Journal of Disability, Vol 9, 2020

Pre-Primary and Primary Inclusive Education for Tanzania (PPPIET) – Foundation Phase : Report on Participatory Research to Inform Design of New Inclusive Education Model in Tanzania

JUDGE, Emma
June 2020

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The Disability Inclusive Development (DID) consortium, a UK Department for International Development (DFID) funded initiative, is working together on the Pre-Primary and Primary Inclusive Education in Tanzania (PPPIET) programme whose ultimate goal is to foster quality sustainable inclusive education for all children with disabilities at scale across Tanzania in mainstream pre-primary and primary government schools. To achieve this, it aims to support collective, coordinated systems change by establishing an agreed common model of basic inclusive pre-primary and primary education in mainstream government schools, and galvanising significant progress in spreading its systematic implementation for all children with disabilities across Tanzania. 

 

This task requires the cooperation of government, civil society and Disabled People’s Organisations (DPOs) to achieve real change.  No single organisation or government department can achieve inclusive education on its own. Pooling the skills and resources and exchanging learnings to achieve quality inclusive education of children can help all involved. Working together will build collective commitment and action, not just amongst DID consortium members but also across government, donors, education actors and the private sector. 

 

Part of this process was to conduct a participatory field research to gather evidence on the current provision of support services needed for inclusive education and identify gaps that need to be filled in the future. The exercise also served to identify key challenges that need addressing to facilitate the removal of legal, policy, systemic, physical, communication and language, social, financial and attitudinal barriers. The findings from the research were intended to identify the priority components that need addressing in the design of an inclusive education design model and the drivers of accountability, i.e. the agencies/stakeholders responsible for implementing the required system changes.

 

Summary of key findings

The Government of Tanzania has continually demonstrated its support and commitment to inclusive education evidenced by the many comprehensive policies for inclusive education, including the National Inclusive Education Strategy (NSIE) 2018 – 2021.  Through these policies, it is actively working to improve the educational environment but the journey is long and requires significant system changes for the policies to be effectively implemented, which needs collaboration, cooperation, planning, and strategic resourcing across multiple ministries, NGOs, DPOs, and the private sector. 

 

To achieve inclusive education, a rights-based approach to education needs to be adopted, focusing on identifying and removing the barriers to access and quality learning for every child, including appropriate infrastructure changes in schools, changing attitudes, and providing additional support to girls and boys with disabilities through learning support assistants.  There also needs to be a fundamental shift towards child-centred pedagogy in teacher training and curriculum development to meet the needs of all learners, including having a mandatory module on inclusive education in all teacher training curricula.  Over time, this will help develop teachers’ confidence and positive attitudes towards teaching children with disabilities and achieve impact at scale.  Strengthening the capacities of all teachers, improving classroom management, increasing awareness about inclusive education for all stakeholders, and improving access to screening and early identification, health, rehabilitation services, and affordable assistive devices are all contributing factors to achieving inclusive education in Tanzania.

 

Systems change to improve learning and support for children with disabilities takes time and requires a significant investment of resources and budget allocation by government and service providers.  However, inclusive education can be cost-effective compared with the cost of segregation and special schools, particularly where ministries work together to ensure a more ‘strategic allocation of existing funds, promoting universal design and co-operation agreements among multiple ministries’.   Developing partnerships with the private sector to improve the physical infrastructure of schools and access to affordable assistive devices can also help reduce the cost of inclusion.

 

Inclusive education is a cross-cutting issue that requires the commitment and accountability of multiple stakeholders across government ministries to ensure its effective implementation.  This includes the MOEST, MOHCDGEC, MOFP, the Prime Minister’s Office (PMO) and the President's Office, Regional Administration and Local Government (PORALG). 

 

It is anticipated that to achieve successful implementation and scaling up of the model design for inclusive education, there will need to be a systematic and phased approach to implementing the recommendations in this report over the short, medium and long term.  It is acknowledged that this process will take considerable time to implement and can only be successfully achieved over a period of years with the support and increased understanding of all stakeholders.  There is no quick-fix solution to inclusive education.  It requires changing long-established systems and adjusting services, including health and education, training, and attitudes.  There is also no financial short cut. 

 

However, while some recommendations require significant investment, others can be achieved in the current context without significant monetary investment.  For example, changing the curriculum for all teacher training to ensure inclusive education is included as a standard module will help transform the approach of teachers and the inclusion of children with disabilities in learning.  Raising awareness of inclusive education for all stakeholders, including policy-makers and implementers will also help increase understanding of the long-term system changes required and reduce stigma and discrimination.  Inclusive education can only be achieved in an inclusive society and it needs collective effort from the government, parents, community, and all stakeholders for effective implementation.

Decolonizing inclusive education: A collection of practical inclusive CDS- and DisCrit-informed teaching practices implemented in the global South

ELDER, Brent C
MIGLIARINI, Valentina
2020

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In this paper, we present a collection of decolonizing inclusive practices for elementary education that we have found effective when implementing them in postcolonial countries. The choice and implementation of such practices was informed by the intersectional and interdisciplinary theoretical framework of Critical Disability Studies (CDS) and Disability Critical Race Theory in Education (DisCrit), and guided by decolonizing methodologies and community-based participatory research (CBPR). The main purpose of this paper is to show how critical theoretical frameworks can be made accessible to practitioners through strategies that can foster a critical perspective of inclusive education in postcolonial countries. By doing so, we attempt to push back against the uncritical transfer of inclusion models into Southern countries, which further puts pressure on practitioners to imitate the Northern values of access, acceptance, participation, and academic achievement (Werning et al., 2016). Finally, we hope to start an international dialogue with practitioners, families, researchers, and communities committed to inclusive education in postcolonial countries to critically analyze the application of the strategies illustrated here, and to continue decolonizing contemporary notions of inclusive education.

 

Disability & the Global South (DGS), 2020, Vol. 7 No. 1

Optimising the performance of frontline implementers engaged in the NTD programme in Nigeria: lessons for strengthening community health systems for universal health coverage

OLUWULE, A
et al
November 2019

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This research article focuses on optimising the performance of frontline implementers engaged with NTD programme delivery in Nigeria. Three broad themes are examined: technical support, social support and incentives

Qualitative data was collected through participatory stakeholder workshops. Eighteen problem-focused workshops and 20 solution-focussed workshops were held  in 12 selected local government areas (LGA) across two states in Nigeria, Ogun and Kaduna States

 

Human Resources for Health, 2019 Nov 1;17(1):79

doi: 10.1186/s12960-019-0419-8

Making it count: The power of youth advocates in the disability movement

WILM, Suzanne
LEONARD CHESHIRE
HANKS, Phil
May 2019

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The 2030 and Counting pilot project sought to give youth with disabilities a seat at the table on the SDGs – providing them with the tools and confidence they need to become their own agents of change. This report provides an overview of the project, together with learnings and recommendations for the future.

In its pilot year, 2030 and Counting brought together young women and men with disabilities and DPOs from Kenya, the Philippines and Zambia to report on and advocate for their rights through the framework of the SDGs

The project had three consecutive phases: Training, Story gathering (data collection) and Influencing. 

In total, 332 reports were collected between June and September 2018. The highest number of reports were submitted under the theme of Education (44%), followed by Work (33%), and Health (14%). The category of Other, which almost entirely focused on discrimination in daily life, accounted for 8%. 80% of reporters had smartphones, offering the potential to increase the use of this feature in future.
 

Deaf people in Pacific Island countries. A design for the Pacific deaf strenthening program

JENKIN, Elena
WATERS, Philip
SEN, Krishneer
ADAM, Robert
2019

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Pacific Disability Forum (PDF) is committed to advancing the rights of people with disabilities living in Pacific Island Countries (PICs). Developing an evidence base to understand more about deaf children and adults’ experiences and priorities will better assist communities, DPOs, organisations and governments to plan inclusive communities, policy and programs.

 

The development of the design was deliberately planned to be highly collaborative and the team met with 161 people who shared their views. This provided opportunities for deaf people and DPOs to contribute to the design, along with representatives from government, non-government and regional organisations. This collaboration occurred in three countries in the Pacific, namely Solomon Islands, Samoa and Fiji. Within Fiji, the design team met with deaf and DPO representatives of other PIC’s along with regional multi-lateral organisations such as UNICEF and the Pacific Island Forum Secretariat (PIFS). Consultations also occurred remotely with supporting organisations and development workers that are focused on disability inclusion in the Pacific. The design undertook a desk review to learn what is known about deaf children and adults in the Pacific region. Participatory methods ensured the process was highly respectful of the views of deaf people. DPOs, other organisations and governments will be asked to identify to what extent deaf children, adults and their families are participating in services, programs and establishments, and to identify potential supports required to increase deaf people’s participation.  A capacity building element has been carefully built into the design. The report is divided into three parts. Part A rationalizes the design, with background information and a brief desk review to collect evidence from and about deaf children and adults in the Pacific. Part B describes the design development process and reports findings. Part C details the design for the situation analysis.  

Innovate for Inclusion. Four cases of application of the social innovation lab methodology to enhance disability inclusion in mainstream settings

MAARSKE, Anneke
NEDERVEEN, Matthijs
BAART, Judith
2019

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This publication reflects back on four co-design processes undertaken by Light for the World’s Disability Inclusion Lab during the past few years. These different journeys in solution development have demonstrated the power of this methodology to create genuine inclusion in livelihood programming while striving to empower persons with disabilities to achieve economic success. In this publication the social innovation lab methodology is described as a unique approach to inclusive programming, highlighting four cases: The Livelihood Improvement Challenge in Uganda, the lab in the EmployAble programme in Ethiopia, the AgriLab in Cambodia, and the InBusiness pilot in Kenya. Lessons learnt are described.

From the day they are born: a qualitative study exploring violence against children with disabilities in West Africa

NJELESANI, Bridget
et al
January 2018

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The qualitative study presented in this article describes the violence experienced by children with disabilities in Guinea, Niger, Sierra Leone, and Togo from the perspectives of children, community members, and disability stakeholders. The study contributes to the literature on violence against children with disabilities, which in West Africa is largely nonexistent. 

A qualitative study design guided data generation with a total of 419 children, community members, and disability stakeholders. Participants were selected using purposive sampling. Stakeholders shared their observations of or experiences of violence against children with disabilities in their community in interviews and focus groups


BMC Public Health 18:153 2018

https://doi.org/10.1186/s12889-018-5057-x

The role of indigenous and external knowledge in development interventions with disabled people in Burkina Faso: the implications of engaging with lived experiences

BEZZINA, Lara
2018

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This paper explores the significance of engaging with the lived experiences of disabled people in countries like Burkina Faso in order to implement long-lasting and beneficial development. It looks at the way disability was conceived of in pre-colonial times and how knowledge imported from the colonisers conflicted with, and continues to influence today, indigenous knowledge in Burkina Faso. Although Burkina Faso obtained its independence from European colonisers over fifty years ago, disability as a terrain for intervention continues to be colonised by international non-governmental organisations (INGOs) that frame their approaches in western models, which are not necessarily applicable in countries like Burkina Faso. In a context where the predominant view of disability is that of disabled people being an economic burden, many disabled people in Burkina Faso feel the need to prove themselves as economically independent; and yet development agencies often do not engage with disabled people’s voices when designing and implementing development programmes. This paper argues that there is a need to engage with disabled people’s lived experiences and knowledges through processes such as participatory video which create spaces where marginalised people’s voices can be heard and listened to by the development agencies that influence disabled people’s lives.

 

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

Growing Together. Child participation through the project journey. Management of a children’s club by the children themselves

HANDICAP INTERNATIONAL
December 2017

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An overview is presented of a project in Bangladesh, Pakistan and Thailand to:

  • To support communities in raising socially and emotionally healthy kids in refugee/IDPs camps and in host communities.
  • To create opportunities for children with disabilities and other vulnerable children (0-12 years old) including children at risk of developmental delays/psychological distress in displacement contexts, to learn and develop safely while having fun.
  • Using “play” as key driver to learn and develop safely children’s potential while having fun.

The project was implemented using:

  • Existing HI tools (Personalized Social Support, Adapted Physical Activity, etc.)
  • Tools piloted in IKEA project (Blue Box, low-cost toy making, inclusive playgrounds, Ideas box)
  • Environmental Footprint Assessment across 3 project sites

Monitoring & evaluation was carried out using techniques including

  • Scopeo (Sc-ore O-f Pe-rceived O-utcomes) Kids
  • Participatory M&E approaches (digital story telling, child-child video interview etc) 

Presented at the People at the centre Seminar, Dec 2017 

 

Needs Assessment Handbook

UN Refugee Agency
May 2017

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Given that UNHCR is one of the signatories of the Grand Bargain, the agency’s Needs Assessment Handbook and its accompanying online Needs Assessment Toolkit provide guidance on how to accomplish these objectives.

 

The Handbook is structured in two parts. The first, which is recommended for all audiences defines need assessments and their different types; describes coordination modalities; outlines the roles and responsibilities of different actors in refugee situations, IDP situations, and mixed situations; provides an overview of the steps to conduct needs assessments and the principles that should guide them; and explains the relationship between needs assessments and other information systems. The second part of the Handbook provides detailed practical guidance on how to conduct needs assessments in the field. It can be used as a reference text, with readers referring to specific steps and sections as needed based on their role in the operation or the needs assessment, and the type of situation.

Zero Project report 2017. Employment work and vocational education & training

FEMBAK, Michael
et al
January 2017

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The results of the Zero Project Survey 2016–2017 consisting of 21 questions with a particular focus this year on employment and vocational and educational training are presented. After five years of Social Indicator research, for the first time data trends are published as well as comparisons between world regions. The Social Indicators section also includes analysis of data availability on youth employment with regards to Sustainable Development Goal (SDG) 8, and of the “data gap” of persons with disabilities living in institutions. 56 Innovative Practices have been selected, and 13 common solutions and “threads” have been identified.  11 Innovative Policies have been selected, and 13 ways to create a significant impact have been identified.

 

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

Participatory and emancipatory approach in disability research. Possible allies for supporting active citizenship, civil rights and actions of social innovation.

TRAINA, Ivan
August 2016

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Participatory and emancipatory approaches in disability research are addressed through three research questions related to: the extent the participatory approach can encourage an active citizenship paradigm for the involvement of disabled people; the extent emancipation through research can contribute to the affirmation of a civil rights model of disability; and the extent it is possible to consider these approaches as tools that can support the design and implementation of socially innovative actions. The paper considers the academic literature and a reviews international documents, assuming a disability perspective

Considering Disability Journal. DOI: 10.17774/CDJ12015.2.2057584

Disability and gender-based violence. Peer research in Kibaha and Mkuranga, Tanzania

ADD
2016

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Development agencies, power holders and service providers need to build into their programmes the right protection for disabled women. It will require sustained global focus, momentum and action. But if we are serious about fulfilling the aspiration to ‘leave no one behind’ then it has to be done. This contextual study aims at building an understanding of the factors and impact of gender-based violence towards women and girls with disabilities in Mkuranga Rural and Kibaha Urban in Pwani Region. The focus is on sexual, physical, and psychological/emotional violence. We hope that this research will act as a catalyst for further exploration, analysis and urgent response actions from a multitude of actors.

Cambodia Capacity Building Learning Review and Annex

LIPSON, Brenda
March 2016

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ADD look at multiple factors, and others specific to the situation of organisations of People with Disabilities (PWD), to generate certain conditions which inform the choice of capacity building approach. In particular, ADD Cambodia’s commitment to an empowering and participative approach which aims to build sustainable organisations of PWD is a direct response to many of the negative factors. It underpins the ADD Cambodia strategy, as they work to “….help disabled people (sic) have their own ideas and develop their own approaches”. This commitment is critical for working in a new context where international donors are increasingly withdrawing from the country, as they are defining it as a newly emerging middle-income country.

Voices of the marginalised

2016

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The aim of 'Voices of the Marginalised' is to bring the perspectives of those who live in poverty or who are highly marginalised, including those with disabilities, older people and people living with mental health problems, into post-2015 policymaking. Focusing on Bangladesh and Tanzania, people with disabilities and older people were asked to become researchers themselves, and were trained to collect and analyse stories from peers in rural and urban areas.

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