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CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Disability inclusion in the United Nations system - Report of the Secretary General

SECRETARY-GENERAL OF THE UNITED NATIONS
October 2020

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When launching the Strategy in June 2019, the Secretary-General stated that the United Nations would lead by example and raise its standards and performance on disability inclusion across all pillars of its work, from Headquarters to the field. The present report outlines the first steps on the path to achieving transformative and lasting change for persons with disabilities across the United Nations system

 

The report is organized into seven sections. Following the introduction, an overview of the advances made in the United Nations on disability inclusion, including the adoption of the Strategy, is provided in section II; the first year of implementation of the Strategy at the entity and country levels is reported on in section III; coronavirus disease (COVID-19) response and recovery efforts are the focus of section IV; the overarching actions for implementation of the Strategy are considered in section V; challenges and opportunities are highlighted in section VI; and the conclusion and recommendations for consideration by the General Assembly are contained in section VII. The report provides an analysis of information from 57 United Nations entities1 that reported under the Strategy ’s entity accountability framework and seven United Nations country teams that completed the accountability scorecard on disability inclusion as part of a targeted roll-out.

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Disability considerations in GBV programming during the COVID-19 pandemic

PEARCE, Emma
September 2020

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Information and practical guidance to support gender-based violence (GBV) practitioners to integrate attention to disability into GBV prevention, risk mitigation and response efforts during the COVID-19 pandemic are given. Initial guidance published in April 2020 updated in Sep 2020

 

GBV AoR HELPDESK Research Query 

Breaking down the barriers for people with disabilities through innovation in Africa

GSMA
September 2020

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During this interactive session, hosted by GSMA’s Assistive Tech team, we shared insights on the mobile disability gap, including findings from our gender and disability research, and lessons learnt from the innovation landscape. We also heard from several leading assistive tech innovators supporting the digital inclusion of people with disabilities, both visible or unseen across emerging markets

Disability Debrief: an international update on persons with disabilities in the COVID-19 crisis

TORRES FREMLIN, Peter
September 2020

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This is an update on disability news around the world relating to the COVID-19 crisis, from late April to the end of September 2020. It's a snapshot of news, statistics, policy, and experiences of persons with disabilities around the world. Links are prvided to the original resources.

 

Topics covered include:

  • What has happended so far: Data on COVID-19 and mortality; Care homes and institutional settings; Impact on persons with disabilities; Gathering data and the gaps; Experiences of Persons with Disabilities
  • Disability in response; International response: Collections of resources; Country and Regional Approaches; Resources by disability
  • Inclusion in protection and interim measures; Masks / face coverings; Physical distancing and isolation; Lockdown and confinement; Institutions and long-term care facilities; Coming out of lockdown; Social protection and services
  • Health, treatment and recovery
  • Across society and sectors: Care; Culture and sport; Digital accessibility and inclusion; Education and young people; Elections and politics; Humanitarian and Refugees; International cooperation; Justice; Mental Health; Transportation and travel; Violence; Water, Sanitation and Hygiene (WASH); Work and skills
  • Rebuilding / what happens next; New perspectives and recovery; Social protection; Work and employment

 

Inclusion of persons with disabilities in social protection for COVID-19 recovery and beyond

COTE, Alex
BALASUBRAMANIAN, Meenakshi
WANGARE, Fatma
HUDA. Karishma
DOS SANTOS, Joaozito
O'BRIEN, Felicity
September 2020

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The COVID-19 crisis has magnified the barriers and inequalities faced by persons with disabilities. Consultation with organisations representing persons with disabilities across regions highlighted the limitation of social protection systems in LMICs to provide adequate support due to lack of social protection schemes, low coverage, and inadequacy of existing schemes. There is little in the way of publicly funded community support services and in some contexts an overreliance on residential institutions, whose users have been disproportionally represented among COVID-19 fatalities. 

In the midst of the crisis, countries have been struggling with inaccessible information (e.g sign language), the lack of universal schemes, and national disability registry for broad outreach and fast relief.

The webinar aimed at providing a global overview of the social protection response for persons with disabilities and their families as well as the different key social protection issues to consider for an inclusive COVID-19 recover

Understanding disability extra costs

CENTRE FOR INCLUSIVE POLICY
September 2020

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Extra costs incurred by people with disabilitites are illustrated through case studies of children, adults and older people with disabilities. 

Disability inclusion in the Western Balkans and Eastern Partnership countries. Disability Inclusion Helpdesk Report No: 51.

CORBY, Nick
CLUGSTON, Naomi
September 2020

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This briefing note provides guidance on how to incorporate disability inclusion within economic and governance reform projects. It is intended to inform the UK Foreign, Commonwealth and Development Office’s (FCDO) Good Governance Fund (GGF). This Note provides basic, introductory guidance on disability inclusion to FCDO advisers and managers engaging with economic and governance reform and sets out opportunities for the FCDO’s programmes and policy dialogue to deliver positive impacts for people with disabilities. The Note addresses three key questions: 2 1. What is the broad status of the rights of people with disabilities in GGF countries and are there any significant differences between the countries? 2. What are the recommended entry points for incorporating disability inclusion within economic and governance reform projects within the five GGF thematic areas? 3. How should the GGF incorporate disability inclusion into the next business case?

 

An annex provides short notes on several factors for each country. The factors are: the legal framework; disability prevalence; economic inclusion; social inclusion; institutionialisation; access to justice; receptions and representation in the media.

A rapid assessment of the status of children with disabilities in Somalia

WAITHIRA MGUBUA, Jane
September 2020

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The main objective of this assessment was to explore the barriers faced by children with disabilities in the cities of Mogadishu, Galkaio, Baidoa and Kismaio in Somalia and assess how different stakeholders have sought to address these barriers. The findings of the Assessment are intended to serve as a limited baseline data to inform future programming in the area, both by the government and its local and international partners.

The Assessment used a mixed-methods approach, combining qualitative and quantitative research methods. The Assessment team interviewed 20 key informants, held four focus group discussions (FGDs) with 48 support persons and another four FGDs with 48 children with disabilities. The quantitative survey covered 100 support persons.

Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies

HASHEMI, Goli
WICKENDEN, Mary
BRIGHT, Tess
KUPER, Hannah
2020

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Background: Access to healthcare contributes to the attainment of health and is a fundamental human right. People with disabilities are believed to experience widespread poor access to healthcare services, due to inaccessible environments and discriminatory belief systems and attitudes. Qualitative data on these bar- riers has not previously been systematically reviewed. A meta-synthesis was undertaken of qualitative studies exploring the barriers to primary healthcare services experienced by people with disabilities in low- and mid- dle-income countries.

 

Methods: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eli- gible studies were identified.

 

Results: Findings suggest that the people with disabilities’ choice to seek healthcare services or not, as well as the quality of intervention provided by primary healthcare providers, are influenced by three types of barriers: cultural beliefs or attitudinal barriers, informational barriers, and practical or logis- tical barriers.

 

Conclusion: In order to achieve full health coverage at acceptable quality for people with disabilities, it is necessary not only to consider the different barriers, but also their combined effect on people with dis- abilities and their households. It is only then that more nuanced and effective interventions to improve access to primary healthcare, systematically addressing barriers, can be designed and implemented.

Global Leprosy Update 2019

WORLD HEALTH ORGANISATION (WHO)
September 2020

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A yearly update providing data from 160 countries around the world on the state of leprosy. The data will be useful to policy-makers, planners and researchers. 

The main leprosy indicators are now all based on a denominator of 1 million population. The key indicators are the case detection rate, the disability rate and the case detection rate in children.

The sub-title, “Time to step-up prevention initiatives” is the main focus of the Editorial comment on the last 3 pages, emphasizing the Triple Zero targets

 

Weekly Epidemiological Record  4 SEPTEMBER 2020, 95th YEAR No 36, 2020, 95, 417–440

 

Uganda's disability data landscape and the economic inclusion of persons with disabilities

Development Initiatives
November 2021

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This report looks at the landscape of data on disability in Uganda – summarising what data on persons with disabilities is available, who produces and uses it, and how – as well as what this means for the economic inclusion of persons with disabilities.

 

For persons with disabilities to benefit from and contribute to society and the economy there needs to be effective policies, programmes and services that support their inclusion, particularly in employment. Reliable information and data on persons with disabilities, known as ‘disability data’, is essential to planning and for decision-making. When it is of high quality, accessible and used effectively, disability data can help organisations of persons with disabilities (OPDs), civil society, government and businesses better understand and prioritise interventions that are vital for supporting persons with disabilities and ensuring their inclusion.

 

OPDs, civil society and the government have an important role to play in strengthening the landscape of disability data. Developed as part of Development Initiatives’ work on data to support disability inclusion, in consultation with Uganda’s disability rights movement, this report presents an analysis of Uganda’s landscape of disability data. It highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion.

Generating disability statistics: Models of disability measurement, history of disability statistics and the Washington Group Questions

Development Initiatives
September 2020

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This paper provides an overview of progress towards the creation of accurate and comparable disability statistics, the critical issues that impact on the measurement of disability, and discusses one of the most prominent international efforts to improve data on disabilities – the Washington Group on Disability Statistics.

Pre-Primary and Primary Inclusive Education for Tanzania (PPPIET) – Foundation phase : Desk Review presented by the Task Team February 2020

JUDGE, Emma
August 2020

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The Disability Inclusive Development (DID) consortium 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 (CWD) 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 CWD across Tanzania over six years.

 

This task requires the cooperation of government, civil society and DPOs to achieve real change.  No single organisation or government department can achieve inclusive education on its own.  Cooperation between all government ministries, including education, health, finance and social welfare are key to providing individual support to learners with disabilities.  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. 

 

The first part in this process was for the Task Team to conduct a desk review to establish an overview of the current educational context with regards to children with disabilities, including legislative, policies and practice, inclusive education strategies, disability contexts, cultural perspective, interventions, existing assessment and quality assurance processes, and opportunities and challenges. 

How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

The life stories and experiences of the children admitted to the Institute for Imbecile Children from 1895 to 1913

Du PLESSIS, Rory
August 2020

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Background: South African scholarship on intellectual disability has produced a sizeable body of research, yet there are numerous areas where there is a paucity of research. One area in which there is a conspicuous paucity of research is historical studies of people with intellectual disability (PWID). The existing works devoted to the history of PWID in South Africa are primarily focused on the legal provisions and institutions for the protection and care of PWID. Missing from these works are the life stories and experiences of PWID.

 

Objectives: The article offers a study devoted to the life stories and experiences of the children with intellectual disability (CWID) who were admitted to the Institute for Imbecile Children from 1895 to 1913. The institute opened in April 1895 in Makhanda (formerly known as Grahamstown), South Africa. The institute was the first of its kind in the Cape Colony for CWID.

 

Method: The study presents a qualitative investigation of the life stories and experiences of the children that were recorded in the institute’s casebook. The entire set of 101 cases contained in the casebook was analysed by adopting a Gadamerian approach to hermeneutics.

 

Results: The examination of the institute’s casebook identified several broad themes relating to the children’s admittance, daily life at the institute and their routes out of the institute. The study also extols the individuality of each child’s life story to provide an awareness and richer appreciation of the humanness and personhood of the children.

 

Conclusion: The article contributes a positive narrative to the identity and the history of South African children with intellectual disability living in the late 19th and early 20th centuries.

 

 

African Journal of Disability, Vol 9, 2020 

Status of disability in Kenya: Statistics from the 2019 census

Development Initiatives
August 2020

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This report presents research that was undertaken as part of Development Initiatives’ work on data to support disability inclusion. It provides analysis of government budget allocations to disability inclusion programmes in Kenya over the period of financial year 2016/17 (FY2016/17) to financial year 2020/21 (FY2020/21). The analysis focuses on disability-relevant ministries, departments and agencies at the national level, including those led by the State Department for Social Protection, the Office of the President, the State Department for Early Learning and Basic Education, and the State Department for Vocational and Technical Training. Due to limitations in the available data, the analysis looks primarily at the education and social protection sectors. This report has been funded with UK aid from the UK government, and was developed with the support of the Inclusive Futures consortium. The opinions expressed are those of the author(s) and do not necessarily reflect the views or policies of the UK government or other members of the Inclusive Futures consortium.

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