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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.

Hearing Aids Product Narrative: A market landscape and strategic approach to increasing access to hearing aids and related services in Low and Middle Income Countries

SAVAGE, Margaret
CLINTON HEALTH ACCESS INITIATIVE
December 2019

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This product narrative was developed to support the identification of activities that will increase and sustain access to appropriate, affordable hearing aids

Five strategic objectives (SO) that can strengthen the market in both the near and longer-term are identified 

IASC Guidelines, Inclusion of persons with disabilities in humanitarian action

INTER-AGENCY STANDING COMMITTEE (IASC)
November 2019

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The guidelines set out essential actions that humanitarian actors must take in order to effectively identify and respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings.

The recommended actions in each chapter place persons with disabilities at the centre of humanitarian action, both as actors and as members of affected populations. They are specific to persons with disabilities and to the context of humanitarian action and build on existing and more general standards and guidelines.

These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organizations in association with traditional humanitarian stakeholders. Based on the outcomes of a comprehensive global and regional multi-stakeholder consultation process, they are designed to promote the implementation of quality humanitarian programmes in all contexts and across all regions, and to establish and increase both the inclusion of persons with disabilities and their meaningful participation in all decisions that concern them.

Wheelchair Product Narrative: A market landscape and strategic approach to increasing access to wheelchairs and related services in Low and Middle Income Countries

SAVAGE, Margaret
CLINTON HEALTH ACCESS INITIATIVE
August 2019

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This product narrative was developed to support identification of activities that will increase and sustain access to appropriate, affordable wheelchairs. The market landscape, context, assessment and challenges is described. Four strategic approaches to market shaping are made.

Guidance on disability inclusion for GBV (gender based violence) partners in Lebanon: outreach, safe identification, and referral of women, children and youth with disabilities

WOMEN'S REFUGEE COMMISSION
UNICEF LEBANON
February 2018

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This guidance, and the associated toolkit, are designed to support frontline workers, community volunteers, and mobilizers and their supervisors who are working in GBV prevention and response to foster inclusion of persons with disabilities in their community activities. It includes guidance, key actions and tools to improve accessibility of existing community processes and activities relating to GBV. This resource has been developed based on the findings of a needs assessment conducted in 2017 which confirmed that women, children and youth with disabilities in Lebanon and their caregivers are facing a range of GBV-related risks.

Including children with disabilities in humanitarian action: Nutrition

DINSMORE, Christine
Ed
February 2018

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

All nutrition humanitarian staff can contribute significantly to the inclusion of children with disabilities, even if not an expert or specialist on issues related to disability. This booklet provides practical tips and entry points to start the process

Chapters include: 

  • impact of emergencies on nutrition of children and women with disabilities
  • why children and adolescents with disabilities are excluded from nutrition and food security interventions
  • frameworks and approaches
  • programmatic actions
  • preparedness
  • response and early recovery
  • recovery and reconstruction
  • practical tips
  • accessible infrastructure tips

Including children with disabilities in humanitarian action: Health and HIV/AIDS

DINSMORE, Christine
October 2017

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

Chapters include: 

impact of emergiencies on health of children and adolescents with disabilities
why children and adolescents with disabilities are excluded health and HIV/AIDS interventions
frameworks and approaches
programmatic actions
preparedness
response and early recovery
recovery and reconstruction
practical tips

Including children with disabilities in humanitarian action: Education

DINSMORE, Christine
Ed
October 2017

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

Chapters include: 

  • impact of emergiencies on the education of children and adolescents with disabilities
  • why children and adolescents with disabilities are excluded from education interventions
  • frameworks and approaches
  • programmatic actions
  • preparedness
  • response and early recovery
  • recovery and reconstruction
  • practical tips
  • accessible infrastructure tips

Including children with disabilities in humanitarian action: Child protection

DINSMORE, Christine
Ed
September 2017

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

Chapters include: 

  • impact of emergiencies on the protection of children and adolescents with disabilities
  • why children and adolescents with disabilities are excluded from child protection interventions
  • frameworks and approaches
  • programmatic actions
  • preparedness
  • response and early recovery
  • recovery and reconstruction
  • practical tips
  • accessible infrastructure tips

 

 

Including children with disabilities in humanitarian action

UNICEF
July 2017

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"The purpose of Including Children with Disabilities in Humanitarian Action is to strengthen the inclusion of children and women with disabilities, and their families, in emergency preparedness, response and early recovery, and recovery and reconstruction. This series of booklets provides insight into the situation of children with disabilities in humanitarian contexts, highlights the ways in which they are excluded from humanitarian action, and offers practical actions and tips to better include children and adolescents with disabilities in all stages of humanitarian action. The booklets were created in response to UNICEF colleagues in the field expressing a need for a practical resource to guide their work. The information and recommendations are based on evidence and good practices gathered from literature and field staff experiences. The six booklets on how to include children and adolescents with disabilities in humanitarian programmes are as follows: 1) general guidance; 2) child protection; 3) education; 4) health and HIV/AIDS; 5) nutrition; 6) water, sanitation and hygiene (WASH)".

General guidance available July 2017. Others to follow.

In addition to the PDF versions in English, Arabic and French, the guidance is also available in a range of accessible formats, including EPUB, a Braille-ready file and accessible HTML formats. 

The guidance was developed in collaboration with Handicap International.

Including children with disabilities in humanitarian action: General guidance

DINSMORE, Christine
Ed
June 2017

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

Chapters in this general guidance include: 

  • impact of emergiencies on children and adolescents with disabilities
  • why children and adolescents with disabilities are excluded
  • frameworks and approaches
  • programmatic actions
  • preparedness
  • response and early recovery
  • recovery and reconstruction
  • practical tips

 

UNICEF developed these booklets in collaboration with Handicap International. The guidance was validated in Jordan and Nepal.

Including children with disabilities in humanitarian action: WASH

DINSMORE, Christine
Ed
June 2017

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

Chapters include: 

  • impact of emergiencies on children and adolescents with disabilities access to WASH
  • why children and adolescents with disabilities are excluded from WASH interventions
  • frameworks and approaches
  • programmatic actions
  • preparedness
  • response and early recovery
  • recovery and reconstruction
  • practical tips
  • accessible infrastructure tips

Strengthening the role of women with disabilities in humanitarian action: A facilitator’s guide

Women's Refugee Commission
February 2017

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"Strengthening the Role of Women with Disabilities in Humanitarian Action: A Facilitator’s Guide" was designed by the Women’s Refugee Commission, in collaboration with organizations of women with disabilities in Africa and South Asia. It is a tool to support women leaders to provide training to members, colleagues and/or partners on humanitarian action. The training is intended to enhance the capacity of women with disabilities to effectively advocate on women’s and disability issues within relevant humanitarian forums at national and regional levels by:
- increasing understanding of the humanitarian system;
- helping participants identify gaps and opportunities for inclusion of women and girls with disabilities within the humanitarian system; and,
- developing advocacy plans to strengthen access and inclusion.

The Women’s Refugee Commission is deeply grateful to the women with disabilities who provided input and feedback after participating in the pilot training, as well as the Network of African Women with Disabilities, the African Disability Alliance, South Asia Disability Forum, and Special Talent Exchange Program in Pakistan, with which we have had an ongoing partnership in this wider project.

Web accessibility policy making : an international perspective

G3ICT
THE CENTRE FOR INTERNET AND SOCIETY
January 2012

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This report reviews of a number of countries policies on web accessibility to share good practice. The internet and ICT have become increasingly accessible with the introduction of electronic screen readers, close-captions video viewers and personally tailored assistive technology readers. Despite this, the authors maintain that there are still 1 billion disabled people who could have better access to the internet and ICT and there is great potential for improvement

E-Accessibility policy handbook for persons with disabilities : based upon the ITU-G3ict e-accessibility policy toolkit for persons with disabilities

NARASIMHAN, Nirmita
Ed
October 2010

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This handbook is a companion to the toolkit and contains contributions from more than 60 experts around the world on ICT accessibility. It is useful for policy makers and regulators, advocacy and research organisations and persons with disabilities on the implementation of the ICT dispositions of the CRPD
Note: Braille and DAISY formats are available from the web link

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