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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.

While about 1.5 million people undergo amputations every year, WHO estimates that only 5-15% of amputees who need prosthetic devices in LMICs have access to them. High prices of prosthetic services in lower- and middle-income countries (LMICs), combined with high indirect costs for users (for example to travel to service points), make prosthetic services unaffordable to many of the people who need them. 

Prosthetic services can be made more affordable by: 1) increasing the number of service units (in particular, by leveraging decentralised service models and the innovative technologies that enable them); 2) establishing reimbursement schemes that encapsulate all costs to the user; and 3) leveraging alternative forms of financing for both capacity-building and user financing.

An opportunity exists to transform access to prosthetic services and products in LMICs, but this will require a coordinated effort between: 1) governments to expand service capacity; 2) global stakeholders to provide guidance on products and technologies; 3) suppliers to expand market presence and offerings; and 4) donors to support these activities. 

Five strategic objectives are proposed to accelerate access to prosthetic services in LMIC

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.

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.

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

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

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

This report examines "the barriers from inaccessible buildings to dismissive attitudes, from invisibility in official statistics to vicious discrimination - that deprive children with disabilities of their rights and keep them from participating fully in society. The report also lays out some of the key elements of inclusive societies that respect and protect the rights of all children, regardless of disability, and progress in helping all children to flourish and make their contribution to the world"