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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.

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.

A new way to measure child functioning

UNICEF
WASHINGTON GROUP
May 2017

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"In recognizing the need for a set of questions that would produce internationally comparable data on children, the Washington Group formed a subgroup in 2009 that is chaired by the National Statistical Office of Italy (ISTAT). UNICEF joined the subgroup in 2011.

The first main activity of the subgroup was the development of a short set of questions to reflect current thinking on child functioning for inclusion in censuses and surveys. The new module uses the ICF-CY as the conceptual framework and relies on a functional approach to measuring disability.

The Washington Group/UNICEF Module on Child Functioning, finalized in 2016, covers children between 2 and 17 years of age and assesses functional difficulties in different domains including hearing, vision, communication/comprehension, learning, mobility and emotions. To better reflect the degree of functional difficulty, each area is assessed against a rating scale. The purpose is to identify the subpopulation of children who are at greater risk than other children of the same age or who are experiencing limited participation in an unaccommodating environment. The set of questions is intended for use in national household surveys and censuses"

The module is being translated into multiple languages. Supporting documentation, including a concept note, tabulation plan, templates for reporting, guidelines for interviewers and training materials are also available.

Guatemala National Disability Study ENDIS 2016 Report

DONICIO Carlos
GRECH Shaun
Islay MACTAGGART
Jonathan NABER
Dr Ana Rafaela SALAZAR DE BARRIOS
Gonna ROTA,
Sarah POLLACK
April 2017

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The Guatemala National Disability Study (ENDIS 2016) was undertaken to address a need for up to date reliable data on disability in Guatemala.

Through a population based survey:

* To estimate the national disability prevalence among adults and children in Guatemala, and to provide regional estimates for 5 broad regions

* To disaggregate the prevalence of disability in Guatemala by age, sex, type of functional limitation and socio-economic status

* To explore the impact of disability on: poverty, quality of life, participation, health and opportunities to go to school and to work amongst children and adults respectively

Through a qualitative study:

* To explore cultural, ideological, and social interpretations and responses to disability; provide insight into the disability and poverty relationship; and examine social, political, and economic dimensions operating within this relationship.

Key To Inclusion: New tool to measure child functioning

UNICEF
March 2016

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A video highlighting the critical importance of collecting data on child functioning, its feasibility and its powerful results. It addresses a new series of questions put together by UNICEF/Washington Group on Disability Statistics that go beyond labels and diagnoses to explore children’s actual experiences and the difficulties that they encounter in performing daily activities.

And every child is entitled to equal opportunity to realize their full potential. So say the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities.

But the hard truth is that millions of children with disabilities are deprived of opportunity.

For every child, a fair chance : the promise of equity

UNITED NATIONS CHILDREN’S FUND (UNICEF)
November 2015

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“UNICEF’s commitment to equity – giving a fair chance in life to every child, everywhere, especially the most disadvantaged – is built on the conviction that it is right in principle and evidence that it is right in practice. This report makes the case for closing persistent gaps in equity…” The report identifies a number of persistent gaps in equity for children, ranging from health to nutrition, to social inclusion. The report concludes by making recommendations to close gaps in equity worldwide as well as projecting progress in achieving equity by 2030

Global Out-of-School Children initiative operational manual

UNICEF
UNESCO INSTITUE FOR STATISTICS
May 2015

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The Out-of-School Children Initiative (OOSCI) aims to support countries in their study and analysis of out-of-school children and children who are at risk of dropping out by using innovative statistical methods to develop comprehensive profiles of excluded children, linking these profiles to the barriers that lead to exclusion, and identifying, promoting and implementing sound policies that address exclusion often from a multi-sectoral perspective. The manual aims to provide concise and powerful tools for achieving this goal. 

OOSCI studies are intended to stimulate policy changes and enable governments to target their strategies for reaching out-of-school children. By using a systematic approach to identifying out-of-school children and analysing the associated issues, the studies can guide education sector reforms that will help bring all children into school.

 

 

Assistance to victims of landmines and explosive remnants of war : guidance on child-focused victim assistance

KASACK, Sebastien
November 2014

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This resource presents guidance on child-focused victim assistance. The first section contains the acknowledgements, foreword, acronyms and chapters one through four outlining victim assistance introductory information, stakeholders, international standards, principles, coordination and cross-cutting issues.  Another six stand-alone documents are available for the six technical components comprise data collection and analysis, emergency and continuing medical care, rehabilitation, psychological and psychosocial support, social and economic inclusion, and laws and policies. The final chapter contains resources and references that users may find helpful

The state of the world's children 2014 in numbers : every child counts

UNITED NATIONS CHILDREN’S FUND (UNICEF)
January 2014

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This report highlights the critical role data and monitoring play in realising children’s rights. It presents an updated compendium of statistics and data (which has been produced thirty years after the initial report) relating to the position of children throughout the world but particularly within the Global South. The data indicators cover a vast range: from demography, health and education, to rate of progression, child mortality, and disparities by household wealth. It emphasises that credible data, disseminated effectively and used correctly, make change possible to target interventions that help right the wrong of exclusion by identifying needs, supporting advocacy, gauging progress and holding duty bearers to account

Take us seriously! Engaging children with disabilities in decisions affecting their lives

LANSDOWNE, Gerison
et al
June 2013

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UNICEF’s work on disability is based on a human rights approach, with a focus on equity. It has been developed within the framework of inclusive development, and actively promotes the social model of disability. A central tenet is that legislation, policies and programmes must be informed and shaped by the children they will affect. Participation is a foundational principle of a rights-based approach. These guidelines are meant to strengthen the capacity of UNICEF and partners in creating opportunities for children with disabilities to exercise their right to be heard and taken seriously.

It is important to:

  • clearly identify obstacles impeding the participation of children with disabilities;
  • examine why participation is important for children with disabilities;
  • provide practical guidance on how and where to reach out and engage children with disabilities more effectively and systematically;
  • prioritize ways to measure the effectiveness of participatory initiatives with children with disabilities. 

Adolescence : beyond the stereotypes

VOICES OF YOUTH
2011

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This report highlights the state of the world from a young perspective by reflecting on adolescents’ experiences and providing insights into their lives. The report contains essays and messages written by adolescents highlighting the impact of racial and other discriminations. This resource is useful for people interested in adolescents’ perspectives of the world

Child disciplinary practices at home : evidence from a range of low- and middle-income countries

UNITED NATIONS CHILDREN’S FUND (UNICEF)
2010

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This report analyses findings on child discipline from 35 Multiple Indicator Cluster Surveys (MICS) and Demographic and Health Surveys (DHS) conducted in low and middle-income countries in 2005 and 2006. Questions on child discipline were addressed to the mother (or primary caregiver) of one randomly selected child aged 2-14 years in each household. The questionnaire asked whether any member of the household had used various disciplinary practices with that child during the past month. The survey covered eight violent disciplinary practices, some of which were psychological (such as shouting and name calling) while others were physical (such as shaking and hitting). The surveys also collected information on three nonviolent forms of discipline, such as explaining why a behaviour is wrong. Finally, interviewers asked the mother (or primary caregiver) about her or his personal beliefs regarding the need for physical punishment in child rearing"

Programming experiences in early childhood development

UNITED NATIONS CHILDREN'S FUND (UNICEF)
November 2006

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This document presents examples and case studies from 21 countries. They demonstrate the benefit of cross-sectoral programming to support early childhood development, some building on early child care or education programme

Programme communication for early child development

KOLUCKI, Barbara
November 2006

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"This booklet explains how principles of programme communication are part of a holistic approach to Early Child Development (ECD). It is designed for programme planners, designers, artists, and communicators to improve their ability to use programme communication for holistic early child development"
Note: This is a companion publication to ‘Programming Experiences in Early Child Development’

Evaluation and research database (ERD)

UNITED NATIONS CHILDREN'S FUND (UNICEF)

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"UNICEF is committed to the dissemination of lessons learned. This database contains abstracts and full text reports of evaluations, studies and surveys related to UNICEF programes that are in compliance with UNICEF Evaluation Report Standards. Reports from 2000 onwards are available in this database and can be sorted by country, by region, by theme or by date"

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