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A disability inclusive response to COVID-19 - four lessons learned about including people with disabilities in humanitarian aid

MORRIS, Lisa
ELLIOTT, Chris
PIERI, Susan
September 2021

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Inclusive Futures played a crucial role in supporting some of the most marginalised people with disabilities in Bangladesh, Kenya, Nepal, Nigeria, and Tanzania during the COVID-19 pandemic. This paper summarises what we learned and it can be used to include people with disabilities in future programming, particularly in contexts at risk of crisis.

General orientation on sustainable livelihood for Filipinos with disabilities

LEONARD CHESHIRE DISABILITY PHILIPPINES FOUNDATION
October 2020

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This event was organised by Leonard Cheshire Disability Philippines Foundation Inc and Chambers of Massage Industry of Visually Impaired in partnership with the Department of Social Welfare and Development Sustainable Livelihood Program. The programme is outlined and followed by an Open Forum for questions and discussion.

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.

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

 

 

Online Parent Training: A Pilot Programme for Children with Autism and Neurodevelopmental Disabilities in Bangladesh

KARR, Valerie
BRUSEGAARD, Callie
KOLY, Kamrun Nahar
VAN EDEMA, Ashley
NAHEED, Aliya
2017

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Purpose: This study aimed to assess the implementation of an online parent training programme in Bangladesh, designed to enhance parental knowledge of autism and neurodevelopmental disorders and related interventions. In addition, study participants were expected to become “Master Trainers” with the intention of training other parents in their local communities.

 

Method: This survey study assessed parental knowledge and programme effectiveness, such as potential online learning barriers, cultural sensitivities, and general course content feedback after each unit.

 

Results: The programme had an 81% completion rate (with parents completing all but one unit) with an average programme knowledge score of 86%. Parents felt that the course content was moderately difficult, the length of the units was appropriate, and the units were culturally sensitive. They requested more detailed lessons, specific case studies, and adaptation of the curriculum for older children.

 

Conclusion: The pilot programme merits the next phase of development, which includes local adaptation and translation. However, the findings are limited by the small sample size.

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.

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  

Not forgetting severe mental disorders in humanitarian emergencies: a descriptive study from the Philippines

WEINTRAUB, Ana Cecilia Andrade de Moraes
et al
November 2016

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"In response to the Typhoon Haiyan in the Philippines, Médecins Sans Frontières-Operational Centre Brussels (MSF-OCB) decided to concentrate its efforts in the severely affected area of Guiuan and its four surrounding municipalities. The MSF-OCB intervention included a comprehensive approach to mental health, including care for people with pre-existing and post-disaster severe mental disorders. Based on this experience of providing MH care in the first five months after Typhoon Haiyan, we report on the monthly volume of MH activities and beneficiaries; sociodemographic and care seeking characteristics of beneficiaries receiving MH counselling/care, stratified by the severity of their condition; profile and outcomes of patients with severe mental disorders; prescribing practice of psychotropic medication; and main factors facilitating the identification and management of individuals with severe mental disorders"

International Health, Vol.8, No.5, pp. 336-344

Doi: 10.1093/inthealth/ihw032

The Use of the International Classification of Functioning, Disability and Health in Primary Care: Findings of Exploratory Implementation Throughout Life

PRINZIE, Peter
LEBEER, Jo
PRINZIE, Peter
2016

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Purpose:   The International Classification of Functioning (ICF) has found widespread acceptance since it was launched in 2001. Yet, little is known about its use in Primary Care. This paper aims to contribute to the dialogue about the practical use of the ICF by exploring how this framework constitutes a supplementary source to inform disability-related decision making in integrated Primary Care.

 

Method: The implementation process of the ICF in a Latin American Primary Care and Community-Based Rehabilitation setting is described and the ICF diagram is applied to a life story as an example of its current use. Participant observation, in-depth study of reports of team meetings and the review of clinical files are the main data collection methods. Data analysis is enabled by the combination of single-case study with theory testing, which facilitates the generation of hypotheses in this exploratory study.

 

Results: A valuable time component of the ICF may support continuity in Primary Care and the universal application of the ICF framework can promote comprehensiveness by integrating individual rehabilitation and collective disability prevention. A way to mitigate the perceived dominance of biomedical disease and deficiency thinking is proposed in order to encourage the biopsychosocial focus of Primary Care. Finally, the implementation of the International Classification of Diseases (ICD-10) in the health condition domain of the ICF highlights the importance of social responsibility towards disability.

 

Conclusion: This study suggests that a creative implementation of the ICF during life course to everyone who uses universally accessible healthcare may strengthen the integrative functions of Primary Care, and may be at the heart of the information system of this essential part of the healthcare system. Further research on the complementary use of ICF and ICD-10 is suggested in order to support community-based multisectoral intervention which may be coordinated by Primary Care.

Living in hell : how people with mental health conditions in Indonesia are treated

HUMAN RIGHTS WATCH (HRW)
March 2016

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This report examines the abuses—including pasung—that persons with psychosocial disabilities face in the community, mental hospitals, and various other institutions in Indonesia, including stigma, arbitrary and prolonged detention, involuntary treatment, and physical and sexual violence. It also examines the government’s shortcomings in addressing these problems.

Based on research across the Indonesian islands of Java and Sumatra, Human Rights Watch documented 175 cases of persons with psychosocial disabilities in pasung or who were recently rescued from pasung. 

 

Living in hell : abuses against people with psychosocial disabilities in Indonesia

HUMAN RIGHTS WATCH (HRW)
March 2016

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This article with a video is related to a report examining the abuses—including pasung—that persons with psychosocial disabilities face in the community, mental hospitals, and various other institutions in Indonesia, including stigma, arbitrary and prolonged detention, involuntary treatment, and physical and sexual violence. It also examines the government’s shortcomings in addressing these problems.

Based on research across the Indonesian islands of Java and Sumatra, Human Rights Watch documented 175 cases of persons with psychosocial disabilities in pasung or who were recently rescued from pasung. 

 

Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal

Vaughan, Kelsey
Thapa, Aradhana
2016

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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

 

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

 

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

 

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

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

Strengthening participation of children and young people with disability in advocacy

SIMMONS, Dr. Catharine
ROBINSON, Dr. Sally
October 2014

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Participation by children and young people in advocacy and change-making can not only improve and foster positive change in their own lives, but also influence the lives of others. When young people’s participation is supported, meaningful and engaged, multiple benefits accrue; their perspectives and experiences bring a unique contribution and can result in rights-based empowerment, enacted citizenship and improved relationships. This has the potential to shape policy, to increase the relevance and responsiveness of organisations they use, and to influence change in their communities in positive ways

 

However, there are significant issues and a range of barriers that discourage, prevent or actively exclude children and young people with disability from participating. A culture of low expectations, social and cultural barriers, relationship and identity difficulties and practical hurdles exist for many young people. As a result, many are precluded from participation, particularly around change-making activities

 

This paper examines how meaningful participation of children and young people with disability in advocacy and change-making can be strengthened. In the paper CDA calls for the promotion of children and young people’s participation as active and valued community members

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.

Children with Disability in Nepal: New Hope Through CBR?

MOL, Tanja Ingeborg
BRAKEL, Wim Van
SCHREURS, Merel
2014

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Purpose: This study assesses the impact of a community-based rehabilitation (CBR) programme on the quality of life (QoL) of children with disability and their families.

 

Methods: A qualitative approach was applied, using two techniques - a ranking line and semi-structured interviews. Nineteen children (ranging from 4 –18 years of age) were interviewed in their homes located in three villages - Chapakhori, Bokraha and Madesha - in Nepal.

 

Results: Children with disability and their families ranked physical health, psychological health, empowerment and level of independence as the most important factors for their QoL. Of the 19 children, 13 had experienced positive changes in their life and 1 child reported a negative change. The positive changes related mainly to their physical health and functioning. The impact of these changes was felt in the ‘social’, ‘level of independence’ and ‘empowerment’ outcome categories. The children mentioned that they had more friends, experienced less stigma, could go to school and were more hopeful about the future.

 

Conclusions: This CBR programme has brought about changes in the QoL of all children with disability and their families. The majority of them reported a positive impact.

 

 

Inclusion works : lessons learned on the inclusion of people with disabilities in a food security project for ultra poor women in Bangladesh

BRUIJN, Paulien
May 2014

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People with disabilities are often amongst the poorest in the developing world, and yet they are usually left out of development projects. Inclusion of persons with disabilities in mainstream development programmes is a relatively new concept in development. The ICCO Gaibandha Food Security Project in Bangladesh is one of the first programmes that has mainstreamed disability on a large scale. This book represents the lessons that are learned about mainstreaming disability in this programme. It is a source of inspiration and offers practical suggestions to make a start with including people with disabilities in (food security) projects

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

Empowerment and participation : good practices from South & South-East Asia in disability inclusive disaster risk management

BOLTE, Patrick
MARR, Samadhi
SITOMPU, Dewi
et al
2014

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This report presents good practices showing examples of inclusion and active participation of persons with disabilities in disaster risk management. The paper is structured in three sections that illustrate general recommendations towards greater participation of persons with disabilities.

Section A provides the background on disability inclusive disaster risk management and reviews existing guidelines as to how the participation of people with disabilities in disaster risk management can be facilitated. 

Section B contains the actual good practices, structured in three separate chapters that illustrate general recommendations towards greater participation of persons with disabilities. Each practice highlights the involvement of individual persons as well as groups, describes the initial setting, the achievements, and the lessons learned from the practice. Each practice concludes with a box with key insights.

The final section C presents the key recommendations that can be drawn from the good practices and that are geared to inform future programming

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