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Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Employment rights of persons with disabilities in India

RIOUX, Marcia
et al
2017

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This report presents an overview of individual experiences and systemic data concerning the right to work for persons with disabilities in India. The report is part of the AWARE Project conducted by DRPI in Hyderabad in Andhra Pradesh, India. A total of 78 people with various physical, sensory and intellectual disabilities participated in this study. The research team also consists of people with various disabilities. Individual experiences have been collected through individual interviews or focus groups discussions. Information was collected about the barriers and challenges to participate in the workforce. People with disabilities were asked by other people with disabilities to tell their own stories about when they have been left out, treated badly or prevented from participating in the workforce because of their disability. These stories give us information about the real human rights situation faced by persons with disabilities. Personal interviews were conducted in Hyderabad and Secundarabad cities in Andhra Pradesh, India. A total number of 78 people were interviewed. The data was collected, collated and interviews conducted by persons with disabilities

Disability Studies Quarterly (DSQ) - Volume 36, Issue No. 4 (2016)

DISABILITY STUDY QUARTERLY
October 2016

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 Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities, disability rights advocates, creative writers, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the multidisciplinary field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society.

Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania

MRISHO, Mwifadhi
FAKIH, Bakar
GREENWOOD, Margo
STEFF, Marion
2016

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Community based participatory research (CBPR) was used to provide evidence on the specific nature and experiences of persons with disabilities and older people from their own perspectives in Tanzania, through the lens of social, political, economic and cultural inclusion. The aim was to strengthen efforts to provide services for and improve the lives of people living in the rural and urban settings of Nachingwea and Kibaha Urban Municipal Council. Twenty-nine peer researchers (nine persons with disabilities, 10 older people and 10 Tanzanian Non-Governmental Organisation (NGO) members working in these communities) were involved in the study. A total of 106 stories were collected. Eight priority areas emerged and were chosen by peer researchers for further discussion in groups: access to education and quality learning; access to health services; issues fed back from NGOs; poverty relating to income and dependence; attitudes towards witchcraft and albinism; relationship difficulties and marriage breakdowns; sexual violence and gender issues; poor treatment from family
 

The challenges of disability in Pakistan : listening to the voices of mothers

ALI, Rabia
RAFIQUE, Sana
November 2015

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“This study was conducted with the aim to explore the experiences of mothers in dealing with children having disabilities in Rawalpindi, Pakistan. Through random sampling method 154 mothers of physically handicapped children studying in pre-schools and primary schools were selected as respondents…The data highlights that the disability of the children had been unexpected for all the mothers who participated in this research. The mothers reported to have been shocked (56%) and apprehended about the future of the children (41%)… The data demonstrates that measures taken by mothers to facilitate their children included seeking help from internet and engaging with support groups and friends”

European Scientific Journal, Vol.11

Women institutionalised against their will in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This short video highlights the situation of female patients with psychosocial or intellectual disabilities at institutions in India. In conjunction with the report by Human Rights Watch, it calls for the better treatment of women and girls in institutions and increased de-institutionalization

 

Note: Full report, summary and easy-to-read version also available

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India

SHARMA, Kriti
December 2014

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This in-depth, illustrated report on the abuses of female patients with psychosocial or intellectual disabilities at institutions in India found that patients experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Easy-to-read version, summary and video also available

Women and girls with a disability in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This easy-to-read summary uses simple language and clear illustrations to succinctly present the key principles of the full report: “Treated worse than animals: abuses against women and girls with psychosocial or intellectual disabilities in institutions in India”. The report found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights

 

Note: Full report, summary and video also available

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India : summary and key recommendations

HUMAN RIGHTS WATCH (HRW)
December 2014

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This illustrated summary presents the key findings and recommendations of the full report which found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Full report, summary report and video also available

“We can also change” Piloting participatory research with persons with disabilities and older people in Bangladesh

BURNS, Danny
OSWALD, Katy
November 2014

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Sightsavers, HelpAge International, ADD International and Alzheimer’s Disease International worked together with the Institute of Development Studies (IDS) to bring the perspectives of those who live in poverty or who are highly marginalised into post-2015 policy making. The aim of the research was to understand better the experiences of social, political and economic exclusion of persons with disabilities and older people in Bangladesh from their own perspectives. Two groups (community and NGO) of peer researchers collected 70 stories from poor and/or excluded persons with disabilities and older people from each of the two sites: Bhashantek, an urban slum in Dhaka; and Cox’s Bazar, a rural area in southeast Bangladesh. From the stories collected and analysed in workshops, the peer researchers identified 13 priority areas that affect persons with disabilities and older people: accidents and disasters; livelihoods; access to education; medical treatment; family support; exclusion and mistreatment; superstition; access to services; mobility; marriage; land; rape and sexual abuse; the role of grassroots community-based organisations. Recommendations from the researchers are made in each area. The peer research programme was evaluated and guidelines for its use are provided.

Measuring quality of life, safety, and social and family participation of project beneficiaries : the ScoPeO tool

BRUS, Aude
et al
July 2014

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"This guide presents ScoPeO, a tool for measuring changes in living conditions as perceived by beneficiaries once a project is implemented. More specifically, the method serves to evaluate quality of life, perception of safety and participation in society and family life in two phases: before or at the start of the project (baseline survey) and at the end of the project (endline survey). Thus, this guide presents concepts related to quality of life and similar notions, the key phases in the process and provides the tools needed to conduct a study on quality of life. This guide is designed for all Handicap International professionals, and in particular the project managers, operational coordinators and technical coordinators in charge of developing, implementing, monitoring and evaluating projects. Handicap International partners may also find this guide useful"

Disability : making CLTS fully inclusive

WILBUR, Jane
JONES, Hazel
July 2014

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This issue of Frontiers of CTLS (Community led total sanitation) focuses on “people with disabilities and particular needs for access to sanitation. There are many forms of disability, including mobility impairments, sensory impairments (affecting sight or hearing), chronic illness, impairments caused by older age or mental health issues.  People affected tend not to be present at triggering, to lack voice in the community, to have their needs overlooked, and may even be hidden by their families. This issue outlines the reality of the experiences of disabled people, the varied nature of their needs and how they can be met. It includes practical recommendations for people engaged in CLTS to make the different phases and processes of CLTS more inclusive”

Frontiers of CLTS : innovations and insights, Issue 03

Checklist for integrating people with disabilities and others with access and functional needs into emergency preparedness, planning, response & recovery

KAILES, June Isaacson
2014

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When it comes to including people with disabilities and others with access and functional needs in emergency plans, strategic plans are rarely enough. Non-specific language and broad planning steps carries a substantial risk of discriminatory response and failure. It is the detail, the who, what, where, when, why, and how embedded in the tactical plans that make the difference. These details should also be incorporated into that standard operating procedures of departments and agencies, job aids, checklists, field operation guides, and training.


This checklist is for emergency planners, managers, responders, and public information officers (PIOs) who have responsibility for developing, maintaining, testing, delivering and revising emergency plans and services. Use it to help:

Evaluate current capacity of critical elements that integrate people with disabilities and others with access and functional needs into emergency planning, response, and recovery.
Develop inclusive emergency plans, policies, processes, protocols, training, job aids/checklists, standard operating procedures and exercise programs.
Periodically evaluate progress and identify elements that have been implemented, and areas that continue to need attention.

Who’s on my side?

ALLIANCE FOR INCLUSIVE EDUCATION UK
Parents For Inclusion UK
March 2013

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“"This film features disabled children and young people, their siblings and family members talking about why allies are important. They also talk about the support they get, the support they want and what changes need to be made in education, health and social care services so that they can have real choice and control. It is useful for anyone interested in inclusive education"

Getting to know cerebral palsy|Working with parent groups : a training resource for facilitators, parents, caregivers, and persons with cerebral palsy

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
et al
2013

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This manual aims to increase knowledge and skills in caring for a child with cerebral palsy. Research highlighted the significant needs of the caregivers, and how they can gain a huge amount of support from meeting with each other in an understanding environment. The manual is divided into 11 modules and promotes a participatory learning approach with an emphasis on the empowerment of parents and caregivers. It provides an opportunity for parents to organise themselves and to consider strategies at the community level to address some of the issues which affect them and their child
Note: An online community that aims to support practitioners share their learning and experiences around the parent training manual is available from the weblink. Members can share questions and perspectives, news items and resources with eachother via email or through a community website

Family perceptions of intellectual disability : understanding and support in Dar as Salaam

ALDERSEY, H. M
2012

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"This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam"
African Journal of Disability, Vol 1, Issue 1, Art. #32

Early childhood development and disability : a discussion paper

WORLD HEALTH ORGANIZATION (WHO)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
2012

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"This discussion paper provides a brief overview of issues pertaining to early childhood development (ECD) and disability. It lays the foundation for a long-term strategic and collaborative process aimed at improving the developmental outcomes, participation and protection of young children with disabilities. Essential to this effort is dialogue between United Nations agencies and relevant stakeholders to identify sustainable strategies which build on existing efforts, and expand on multisectoral approaches to guarantee the rights of young children with disabilities and their families"

Mainstreaming disability in disaster management : a toolkit

HANS, Asha
et al
2012

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The toolkit promotes an understanding of the main issues and concerns from the perspective of people with disabilities in the context of disasters and provides an understanding for integration and mainstreaming. The comprehensive toolkit provides a step by step approach for the inclusion of disability in disaster management. 

  • It provides the user with a resource to help plan in mainstreaming disability in disaster management
  • A guidance note, which summarizes the mainstreaming needs and enables users to understand them from the perspective of a Person with Disability.
  • A guidance on the most appropriate methodology to be adopted for including disability in the disaster management process, to monitor and evaluate it; a good practice scenario and a road map.
  • A checklist for use and FAQs are provided in the last section. Section wise essential readings and a reference, which refers specifically to the issue, has been provided to give the background and deeper understanding. Most of these are accessible through the Internet. At the end of the document additional references are provided. This section refers to the most important writings, handbooks and guidelines available. As very few resources have been developed on the subject, generic material has been included

​This toolkit is intended for use by policy makers, government officials, members of Panchayati Raj Institutions, non-government organisations, disabled peoples organisations and disaster management practitioners

The roles and influence of grandmothers and men : evidence supporting a family-focused approach to optimal infant and young child nutrition

AUBEL, Judi
2011

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"This report reviews both published and gray literature from the past 25 years that addresses intra-household roles and dynamics related to infant and young child nutrition-specifically the roles and influence of senior women, or grandmothers, and men. The report examines infant and young child nutrition and other maternal and child health interventions explicitly involving grandmothers and/or men and reports on each intervention’s effectiveness"

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