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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

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/

MAANASI - A sustained, innovative, integrated mental healthcare model in South India

JAYARAM, Geetha
GOUD, Ramakrishna
CHANDRAN, Souhas
PRADEEP, Johnson
2019

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Studies in low and middle-income countries (LMICs) point to a significant association of common mental disorders with female gender, low education, and poverty. Depression and anxiety are frequently complicated by lack of disease awareness and non-adherence, the absence of care and provider resources, low value given to mental health by policy-makers, stigma, and discrimination towards the mentally ill. This paper aims to show that female village leaders/ community health and outreach workers (CHWs) can be used to overcome the lack of psychiatric resources for treatment of common mental disorders in rural areas.

A multidisciplinary team was set up to evaluate and treat potential clients in the villages. A program of care delivery was planned, developed and implemented by: (a) targeting indigent women in the region; (b) integrating mental health care with primary care; (c) making care affordable and accessible by training local women as CHWs with ongoing continued supervision; and (d) sustaining the program long-term.   Indigenous CHWs served as a link between the centre and the community. They received hands-on training, ongoing supervision, and an abridged but focused training module to identify common mental disorders, help treatment compliance, networking, illness literacy and community support by outreach workers. They used assessment tools translated into the local language, and conducted focus groups and client training programs. 

As a result, mental healthcare was provided to clients from as many as 150 villages in South India. Currently the services are utilized on a regular basis by about 50 villages around the central project site. The current active caseload of registered clients is 1930.  Empowerment of treated clients is the final outcome, assisting them in self-employment. 

Rural mental healthcare must be culturally congruent, and must integrate primary care and local CHWs for success. Training, supervision, ongoing teaching of CHWs, on-site resident medical officers, research and outreach are essential to continued success over two decades.

 

Disability, CBR & Inclusive Development, [S.l.], v. 30, n. 2, p. 104-113, Oct. 2019

 

 

Strengthening mental health system governance in six low- and middle-income countries in Africa and South Asia: challenges, needs and potential strategies

PETERSEN, Inge
et al
February 2017

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The aim of this study was to identify key governance issues that need to be addressed to facilitate the integration of mental health services into general health care in the six participating "Emerald" countries (Ethiopia, India, Nepal, Nigeria, South Africa, and Uganda).  The study adopted a descriptive qualitative approach, using framework analysis. Purposive sampling was used to recruit a range of key informants, to ensure views were elicited on all the governance issues within the expanded framework. Key informants across the six countries included policy makers at the national level in the Department/Ministry of Health; provincial coordinators and planners in primary health care and mental health; and district-level managers of primary and mental health care services. A total of 141 key informants were interviewed across the six countries. Data were transcribed (and where necessary, translated into English) and analysed thematically using framework analysis, first at the country level, then synthesised at a cross-country level.

Equal measures 2030: Policymakers survey

EQUAL MEASURES 2030
2017

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This report gives interim findings from results of a survey of 109 policymakers in five countries (Indonesia, India, Kenya, Senegal and Colombia), and seeks to shed light on:

  • How do policymakers perceive progress on gender equality in their countries?
  • What most needs to change in order to improve gender equality?
  • What data and evidence do they rely on to make their decisions?
  • How confident are they in their understanding of the major challenges affecting girls and women in their countries?

 

These findings will contribute to debates about data-driven decision making on gender equality, and raise attention to the gaps in accessible, reliable and relevant data and evidence needed to reach the SDGs by 2030.

Toolkit for understanding and challenging leprosy related stigma for Civil Society Organisations in India

JOY, Anish
et al
2017

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This toolkit is intended primarily for use by CSO's at the community level in India for use with field workers and local governments for challenging stigma and discrimination against people affected by leprosy/disabilities. The toolkit uses simple activities and pictures and is based on a participatory approach which requires active involvement of the group being trained. There are 6 modules:

What is leprosy

What is stigma

How we stigmatise others

How it feels to be stigmatised

Understanding human rights

Action towards inclusion

There are 10 appendices providing supporting information for the toolkit  

‘Ask us what we need’: Operationalizing Guidance on Disability Inclusion in Refugee and Displaced Persons Programs

PEARCE, Emma
2015

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Persons with disabilities remain one of the most vulnerable and socially excluded groups in any displaced community. Barriers to accessing humanitarian assistance programs increase their protection risks, including risk of violence, abuse and exploitation. Women’s Refugee Commission has been supporting the United Nations High Commissioner for Refugees and implementing partners to translate guidance on disability inclusion into practice at field levels through the provision of technical support to eight country operations. In the course of the project, WRC has consulted with over 600 persons with disabilities and care-givers and over 130 humanitarian actors in displacement contexts. Key protection concerns identified include a lack of participation in community decision making; stigma and discrimination of children and young persons with disabilities by their non-disabled peers; violence against persons with disabilities, including gender-based violence; lack of access to disabilityspecific health care; and unmet basic needs among families of persons with multiple impairments. Suggested strategies to further advance disability inclusion in humanitarian programming include: strengthening identification of protection risks and case management services for persons with disabilities; facilitating contextspecific action planning around key guidelines; and engaging the disability movement in advocacy on refugee issues.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 1

Disability disaggregation of data : baseline report

JOLLEY, Emma
THIVILLIER, Pauline
SMITH, Fred
December 2014

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“This baseline report contains information on the initial steps (prior to the start of data collection) undertaken to include disaggregation of data by disability in two projects in Tanzania and India. The report includes information on project selection, development of an Monitoring and Evaluation (M&E) plan, adaptation of data collection tools and training of Country Office staff, partners and data collectors. This baseline also captures the knowledge, attitudes and practices of programme managers, decision makers and data collectors around disability, the availability of data, and the experiences of Sightsavers’ implementing staff”

Note: The user has given permission for the uploaded document to be reproduced and made publicly available on the Source website

Violence Against Persons with Disabilities in Bidar District, India

DEEPAK, S
KUMAR, J
SANTOSH, B
GORNALLI, S
MANIKAPPA, P
VYJANTHA, U
GIRIYAPPA, R
2014

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Violence and sexual violence against persons with disabilities at community level are serious issues. Though CBR programmes and DPOs are expected to prevent violence and offer support to the victims, there is very little informationabout their role in this regard.

 

Purpose: This research aimed to assess the level of violence and sexual violence experienced by DPO members, and the role played by CBR programmes in preventing it.

 

Method: The study involved a non-random consecutive sample of 146 persons with disabilities from 3 sub-districts of Bidar district in Karnataka, India. Using a structured questionnaire, interviews were conducted by a group of trained DPO members and CBR workers, many of whom had personal experience of violence. The data was entered using Epi-Info and then converted into spreadsheet Tables for analysis.

 

Results: 58% of the sample reported having experienced violence and 14% reported experiences of sexual violence during the previous 12 months. Girls and women reported higher levels of violence at different age groups. Male children and young adults reported having experienced more violence, including sexual violence, than older men. The research did not provide conclusive evidence that participation in the CBR and DPO activities played a protective role.

 

Conclusions: Violence and sexual violence against persons with disabilities are serious problems. More research on the subject, in terms of roles of CBR programmes and DPOs, is needed.

Fact sheet : refugees with disabilities

WOMEN’S REFUGEE COMMISSION
2014

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This factsheet highlights the issue of disabilities among refugees and conflict-affected population. It emphasizes actions undertaken by the Women’s Refugee Commission (WRC) and highlights their next steps in disability inclusion

Note: Also available in easy read format

Inclusive disaster risk management : a framework and toolkit

FERRETTI, Silva
KHAMIS, Marion
2014

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This framework and toolkit have been designed to support practitioners in challenging and deepening inclusiveness in their work. They have been designed in simple language, so the resource should be easy to adapt for the use of field staff as a complement to existing manuals and operational resources on DRM. The practical framework contains the following sections:introduction, framework for inclusive DRM, levels of achievements, and assessing inclusiveness, using the framework for,  annexes and Q&A. Throughout the resource, related resources and checklists are provided and the toolbox features cartoons, tools catalogue, learning pills, case studies, poster and 4D lenses. These resources are useful for practitioners who want to develop an understanding of inclusive DRM framework and to learn how to practically assess inclusiveness in in ongoing DRM situations

Inclusive disaster and emergency management for persons with disabilities : a review of needs, challenges, effective policies, and practices

RAJA, Deepti Samant
NARASIMHAN, Nirmita
2013

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This report provides an introduction into the needs of persons with disabilities in disasters and emergencies and reviews the challenges, effective policies and practices of inclusive disaster and emergency management.  It compiles international mandates and guidelines, strategies and practices for inclusive disaster management and gives an overview of the disaster and emergency management process and how persons with disabilities can be affected at each stage.  This report highlights the importance of information and communication technologies throughout the process and provides related case studies

Availability and accessibility of treatment for persons with mental illness through a community mental health programme

NAVANEETHAM, Janardhana
RAGHUNANDAN, Shravya
NAIDU, D M
HAMPANNA, H
2011

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This article describes experiences in implementing a community mental health and development project in a rural district in southern India, including the position of persons with mental illness when the project was initiated, the challenges the faced and the strategies that were developed to overcome these challenges. The authors conclude that when services are locally available, persons with mental illness can be treated and rehabilitated within their own community. They can live with dignity and their rights are respected. There is a great need for inclusion of persons with mental illness in the existing developmental activities and in disabled persons’ organizations.

 

 

Disability, CBR and Inclusive Development, Vol 22, No 2

Outcomes of people with psychotic disorders in a community-based rehabilitation programme in rural India

CHATTERJEE, Sudipto
et al
November 2009

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This article describes "the uptake and impact of a service using the community-based rehabilitation framework for people with psychotic disorders within a defined catchment area in a rural, impoverished community in India. The programme was implemented by the Ashagram Trust, a community-based nongovernmental organisation. We describe the functional (disability) outcomes of people with psychotic disorders; identify the determinants of their outcomes; and highlight the research and policy implications of this study for service provision in rural areas of low- and middle-income countries"
British Journal of Psychiatry, Vol 195, No 5

Community-based surveillance of antimicrobial use and resistance in resource-constrained settings|Report on five pilot projects

HOLLOWAY, Kathleen A
2009

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This document describes five pilot surveillance projects that were set up in India (three sites) and South Africa (two sites) with the aim of developing a model for undertaking integrated community-based surveillance in resource-constrained settings and generating baseline data. The methodology used in each area aimed to collect antimicrobial resistance (AMR) and use data from the same geographical area over time, but was modified to suit the particular characteristics of each site

Going to scale with community-led total sanitation : reflections on experience, issues and ways forward

CHAMBERS, Robert
2009

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Community-Led Total Sanitation (CLTS) is a revolutionary approach in which communities are facilitated to conduct their own appraisal and analysis of open defecation and take their own action to become open defecation-free. This report presents CLTS approaches in six countries which differ organisationally with contrasting combinations of NGOs, projects and governments. Practical elements in strategies for going to scale have included: training and facilitating; starting in favourable conditions; conducting campaigns and encouraging competition; recruiting and committing teams and full-time facilitators and trainers; organising workshops and cross-visits; supporting and sponsoring Natural Leaders and community consultants and inspiring and empowering children

 

Practice Paper, Vol 2009, No 1

Missing the target #4 : time is running out to end AIDS - treatment and prevention for all!

INTERNATIONAL TREATMENT PREPAREDNESS COALITION (ITPC)
July 2007

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This report provides research from 17 countries to support the case that efforts to ensure universal access to treatment for HIV and AIDS are maintained and accelerated; that supplementary services are also provided free at the point of access; that there is increased investment in health care workers; and co-ordinated policy reforms. It also recommends that donors ensure sustainable funding for treatment programmes and identifies areas of weaknesses in global programmes. In addition, it provides focus reports for Cambodia, China, Malawi, Uganda, Zimbabwe and Zambia; brief updates on countries previously reported on: Dominican Republic, Kenya, Nigeria, India, Russia and South Africa; and short summaries on Argentina, Belize, Cameroon, Malaysia and Morocco

Successful projects : what makes them work? a cross-national analysis of the studies of projects that have improved the quality of life of people with intellectual disabilities in India, Romania, Kenya and South Africa

GUSTAVSSON, Anders
et al
January 2007

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“This cross national analysis is based on national studies made by research teams in India, Kenya, Romania and South Africa. It aims to draw out the lessons learnt from successful social development processes in these countries. In each country, studies have been made of projects identified as interesting, successful and/or outstanding in the way they have improved the quality of life of people with intellectual disabilities. This comparative report briefly describes the national studies, from which the respective teams made their own national conclusions and continues with across national analysis attempting to identify circumstances or factors that are common to these successful projects. Finally, the report summarises the conclusions and their implications”

A community-based health education programme for bio-environmental control of malaria through folk theatre (Kalajatha) in rural India

GHOSH, Susanta K
et al
December 2006

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Kalajatha is a popular, traditional art form of folk theatre depicting various life processes of a local socio-cultural setting. It is an effective medium of mass communication in the Indian sub-continent especially in rural areas. Using this medium, an operational feasibility health education programme was carried out for malaria control. This study was carried out under the primary health care system involving the local community and various potential partners

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