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Disability data in developing countries: opportunities to support inclusion

Dan Walton
January 2020

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A blog explaining how data can be a powerful tool for understanding the challenges and opportunities faced by people with disabilities in developing countries, and for improving their welfare and access to relevant services. High-quality disability data, when accessible and used effectively, can help communities and their advocates, policymakers and local officials better understand and prioritise interventions that benefit people with disabilities. However, it is unclear what data is currently available to these stakeholders, and how it could be improved to better support the inclusion of people with disabilities.

How well is aid targeting disability?

Dan Walton
December 2019

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A blog explaining and categorising how international aid has been allocated to projects in a primary or a secondary disability component. It further classifies disability-relevant projects according to their particular focus on one or more of two areas:

Inclusion and empowerment projects have a focus on ensuring people with disabilities are included in benefits on an equal basis to people without disabilities.
Economic empowerment projects are a subset of inclusion and empowerment projects that have the deliberate purpose of improving employment opportunities and rights for people with disabilities.

Social protection and disability in Zambia

KIDD, Stephen
WAPLING, Lorraine
KABARE, Krystle
October 2019

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This report presents findings from a short study in Zambia to examine its social protection system and programmes and identifies the challenges faced by persons with disabilities in accessing them. The study was undertaken by a visit to Zambia between 31st October – 4th November 2016 during which a range of interviews and focus group discussions were undertaken. The study was supported by a review of the literature and some limited analysis of administrative data.

Topics presented in the report include:

  • the broader context of Zambia particularly around issues of education, health and consumption dynamics
  • the national population of persons with disabilities
  • key challenges faced by persons with disabilities
  • the legislative and policy framework on disability in Zambia
  • the governance of social protection and support for persons with disabilities
  • the disability classification system and an overview of the social protection system
  • the evolution of the Social Cash Transfer and access to the scheme by persons with disabilities 

India’s disability estimates: Limitations and way forward

RAKHI, Dandona
et al
September 2019

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With India preparing for the next decennial Census in 2021, disability estimates and data collection methodology between the Census 2011 and the most recent population-level survey for India and its states were compared, to highlight the issues to be addressed to improve robustness of the disability estimates in the upcoming Census.

 

Data from the Census 2011 and from two complementary nationally representative household surveys that covered all Indian states with the same methodology and survey instruments–the District-Level Household Survey-4 (DLHS-4, 2012–2013) and the Annual Health Surveys (AHS three rounds, 2010–11, 2011–12 and 2012–13) were used. Data from DLHS-4 and AHS 2012–13 round were pooled to generate estimates for the year 2012–13. Data collection methodology between the sources was compared, including the review of definitions of each type of disability. The overall, mental, visual, hearing, speech, and movement disability rate (DR) per 100,000 population were compared between the sources for India and for each state, and the percent difference in the respective rates was calculated
 

Global Disability Summit: One Year On – accountability report 2019

EQUAL INTERNATIONAL
September 2019

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This first accountability report, one year on from the Global Disability Summit 2018, presents independent analysis of the 171 sets of commitments made by governments and organisations at the Summit. It also sets out the results of a self-reporting survey completed by Summit participants, updating on progress made against their commitments so far.

 

The wider impact of the summit is discussed.

 

The results of the first GDS18 self-reporting survey demonstrate that significant progress has been made on implementation of the 968 Summit commitments. Work is reported to be underway on 74% of the commitments and 10% are reported as already completed, contributing towards an improved and increased visibility of disability inclusion within development and humanitarian action.

 

Appendix 2 gives country level case studies: Case study developed by Users and Survivors of Psychiatry Kenya; Case Study developed by the National Federation of the Disabled Nepal (NFDN); and Case Study developed by I Am a Human, Jordan

 

The missing billion - Access to health services for 1 billion people with disabilities

KUPER, Hannah
HEYDT, Phyllis
July 2019

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One billion people around the world live with disabilities. This report makes the case that they are being “left behind” in the global community’s work on health. This lack of access not only violates the rights of people with disabilities under international law, but UHC (Universal Health Care) and SDG 3 cannot be attained without better health services for the one billion people with disabilities. 

Health and healthcare are critical issues for people with disabilities. People with disabilities often need specialized medical care related to the underlying health condition or impairment (e.g., physiotherapy, hearing aids). They also need general healthcare services like anyone else (e.g., vaccinations, antenatal care). On average, those with disabilities are more vulnerable to poor health, because of their higher levels of poverty and exclusion, and through secondary conditions and co-morbidities. People with disabilities therefore may require higher levels of prevention, diagnosis, and treatment services. However, health services are often lower quality, not affordable, and inaccessible for people with disabilities. In many situations these barriers are even more significant for women with disabilities, compared to men with disabilities.

Guidelines. Inclusion of persons with disabilities in humanitarian action

IASC TASK TEAM ON INCLUSION OF PERSONS WITH DISABILITIES IN HUMANITARIAN ACTION
July 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. 

 

Chapters include:

  • What to do - key approaches to programming
  • Data and information management
  • Partnerships and empowerment of organisation of people with disabilities
  • Cross cutting considerations
  • Accountability to affected people and protection from sexual exploitation and abuse
  • Humanitarian response options
  • Stakeholder roles and responsibilities
  • What sectors need to do
  • Camp coordination and camp management
  • Education
  • Food security and nutrition
  • Livelihoods
  • Health
  • Protection
  • Shelter and settlements
  • Water, sanitation and hygiene

Every learner matters: Unpacking the learning crisis for children with disabilities

McCLAIN-NHLAPO, Charlotte
et al
June 2019

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This paper was developed by the World Bank in partnership with Leonard Cheshire and Inclusion International. It is an attempt to add knowledge to the current understanding of the importance of learning achievements, with a focus on children with disabilities. While the premise is that inclusive education refers to the inclusion of all children, the focus of this paper is on children with disabilities.

The aim of the paper is to:

  • Provide an evidence-based review of educational participation of children with disabilities.
  • Establish a case for focusing on learning achievements for students with disabilities.
  • Take stock of current mechanisms of measurement of learning outcomes and review their inclusivity.
  • Explore evidence of practice and systems which promote disability-inclusive learning for all. 

Four case studies are provided - from Pakistan, South Africa, Canada and UK.

NOTHING ABOUT US WITHOUT US! Cooperation with organisations of persons with disabilities in community programmes A learning guide

LIGHT FOR THE WORLD
June 2019

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Good practices of DPO (Organisations of Persons with Disabilities) involvement in Light for the World programmes are analysed and successful ways of supporting DPO empowerment are reported. The paper is based on interviews and focus group discussions with organisations of persons with disabilities (DPOs), other project partners and Light for the World programme colleagues in Bolivia, Ethiopia, Mozambique, Northeast India and South Sudan

Disability inclusion helpdesk; evidence digest issue 1, June 2019

SDDirect
June 2019

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The Evidence Digest aims to capture knowledge emerging from Helpdesk activities in a systematic manner and disseminate findings. This short summary will:

Share information on and learnings from the Disability Inclusion Helpdesk over the last quarter, highlighting headline messages and implications for programmers and policymakers;
Share relevant information and learning from other DID outputs;
Provide relevant information on recent evidence, policy changes and events in the field of disability inclusion, and;
Raise awareness on how to access the Helpdesk and demonstrate its offer.

Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Rapid review of the inclusion of people with disabilities and older people in gender-based violence (GBV) humanitarian interventions

PEARCE, Emma
MURRAY, Sinead
REIS, Chen
May 2019

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VOICE has partnered with Elrha to conduct a rapid review to:

1. Improve understanding of how people with disabilities and older people are included in GBV interventions;

2. Assess how strategies for DOAI are aligned with the recently published Humanitarian Inclusion Standards (HIS) for Older People and People with Disabilities;

3. Identify and document positive practice examples of inclusion of people with disabilities and older people in GBV interventions.

 

The VOICE review team collected qualitative and quantitative data through a range of methodologies, including a desk review of formal and grey literature such as programme documentation, and key informant interviews with key stakeholders.​

Study on explosive hazard victim reporting and data management processes in Iraq

NIJHOLT, Sarah
April 2019

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Handicap International (HI) commissioned a study on on explosive hazard victim reporting and data management processes in Iraq. The overall objectives of the study were to:

  • Understand what explosive hazard victim reporting and data management processes exist in Iraq;
  • Identify who is collecting such information, for which reasons and how it is being shared, and how it is being officially used;
  • Identify whether international victim data collection good practices and reporting standards are being followed up, and make concrete recommendations to help meet the standards;
  • Understand the successes, shortfalls, and challenges in data collection and information sharing;
  • Identify the needs of the data collection community in terms of ensuring sufficient victim reporting and data collection;
  • Identify if and how the data on victims is being collected and used by government authorities and the international fora.

 

Desk research was carried out and data collection took place in March 2019 in Erbil, Baghdad and Ninewa governorates in Iraq. In total, the qualitative researcher spent 3 days in Erbil, 4 days in Baghdad, and 6 days in Ninewa governorate to conduct interviews through a snowball approach. In total, 22 interviews were conducted with a variety of stakeholders, including humanitarian mine action actors, government officials, hospital directors, police and community leaders. This report provides an overview of the main findings.

Report on the extent to which Rwanda’s implementation of the SDGs complies with its obligations under the CRPD

RWANDA UNION OF THE BLIND (RUB)
April 2019

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This report aims to examine the extent to which Rwanda’s activities aimed at achieving the goals and targets set out in the SDGs include and consider people with disabilities and comply with its commitments under the CRPD. 

Information for this report was obtained from two sources: the first source was the available documents including government policies, laws and reports, as well as a variety of other documents and reports from other sources. The second source of information was interviews conducted with people with disabilities from three different regions of the country, namely Musanze district, Nyagatare district, and the city of Kigali.

 

This report focuses on five SDGs which were selected after a series of consultations with people with disabilities and their organisations. These are:

Goal 1: End poverty in all its forms everywhere;
Goal 3: Ensure healthy lives and promote well-being for all at all ages;
Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all;
Goal 5: Achieve gender equality and empower all women and girls;
Goal 8: Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all.

Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

Local economic and inclusive development; a toolkit for replication

Humanity & Inclusion
CAMID
The Employers' Federation of Ceylon
2019

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This replication guidebook is a tool that aims to highlight the link between social exclusion and poverty and is based on the premise that a country cannot achieve its development targets, if a section of its people is left behind.

 

This guidebook aims to show practitioners practical ways of working on economic development that inclusive of socially excluded groups such as women, people with disabilities, people living in poverty, etc. It provides corresponding concepts, explains the steps and suggests tools that may help practitioners use and adapt to their context. The context of this book are based on field level experience of the project team of the Inclusive Economic Development project.

India inclusion summit 2018

March 2019

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India Inclusion Summit is a community driven initiative that aspires to build an Inclusive India by 2030. It is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society.

 

Videos of some of the presentations are available including:

My Journey and ‘Deaf gain’ing an accessible India:  Vaibhav Kothari (18 mins), signed

You’re not just special. You’re Special Edition:  SwarnaLatha (11 mins)

Don’t let disability come in the way of things you love: Zoyeb Zia (10 mins), signed

The Adventure of Autism and quest to serve each other: Rupert Isaacson (20 mins), signed

Making a billion people read despite their disabilities: Brij Kothari (21 mins), signed

The ability needed to be whoever you want to be: Devika Malik (13 mins), signed

Everyone has something to give: Suchitra Shenoy (11 mins), signed

From being inclusive to doing acts of inclusion: Yetnebersh Niguissie (12 mins), signed

Finding your missing piece: Jerry White (18 mins), signed

Listening to the voice within that opens infinite possibilities: Rajni Bakshi (15 mins), signed

Being a mother is the most satisfying role: Suhasini Maniratnam (21 mins) signed

 

 

Women and girls with disabilities. Needs of survivors of gender based violence and services offered to them

BURGHAL, Waseem
March 2019

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This study on GBV among women and girls with disabilities was conducted by UNFPA (United Nations Population Fund) with the support of Denmark in the context of the GBV Sub-Cluster Strategy 2018-2020. It was based on a needs analysis and mapping of services offered to women and girls with disabilities aged 15 and older who are survivors of gender-based violence (GBV) in the West Bank and Gaza Strip, particularly in view of the poor protection, care and social services available to women survivors of violence. Its objective was to map the available services; analyze major gaps and challenges related to service delivery; identify roles and responsibilities of stakeholders and service providers, including stakeholder coordination, legislation and policies, capacity, prevention and response services, the referral process and accountability; as well as to make recommendations and propose interventions to address the weaknesses in the protection system for women and girls with disabilities in Palestine.

Informe regional America Latina Bajo El enfoque de la convencion sobre los derechos de las personas con discapicidad

March 2019

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Este primer informe regional de la situación de las personas con discapacidad en América Latina ha sido elaborado por RIADIS con la finalidad de realizar un primer acercamiento al estado de la implementación de los ODS bajo el enfoque de la CDPD y la reformulación del Programa de Acción del Decenio de la Organización de los Estados Americanos (OEA). En este sentido, el informe pretende identificar los avances y buenas prácticas que se encuentran realizando los gobiernos de la región en materia de la aplicación de la CDPD a través de la implementación de los ODS en la región, así como establecer las oportunidades y los desafíos que se presentan para que las organizaciones de personas con discapacidad puedan seguir conquistando nuevos espacios y haciendo efectivo el ejercicio pleno de sus derechos. El presente informe se enfoca en diez principales áreas temáticas, identificadas como prioritarias por las personas con discapacidad de la región, quienes aportaron al abordaje de las mismas, tanto a través de las respuestas que se recopilaron de la encuesta inicial, como a través de las contribuciones grupales e individuales obtenidas en el taller de revisión del borrador del informe regional.

 

Las diez áreas temáticas que se abordan en el presente informe son las siguientes: 1. Educación inclusiva 2. Mujeres con discapacidad 3. Personas indígenas con discapacidad 4. Inclusión laboral de las personas con discapacidad 5. Reducción de riesgos de desastres y acción humanitaria 6. Accesibilidad 7. Acceso a la justicia 8. Derecho a vivir de forma independiente y ser incluido en la comunidad 9. Recopilación de datos 10. Participación de las personas con discapacidad

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