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COVID19 Resource Key advocacy messages, questions to ask on inclusion and signpost to resources to learn more

Dr. Werner-Freybergstr
March 2020

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The COVID pandemic continues to escalate across the world, this document has been prepared to;

  • Provide some top-line advocacy messages that can be used for advocacy and communications,
  • Give a few questions example that you can ask yourself/or other stakeholders to check how people with disabilities are being included,
  • Provide key resources for further reading. We recognise the importance of safe, evidence-based messages, and stand by the advice of the World Health Organisation on health-related issues, of the Inter-Agency Standing Committee on international coordination, and of the International Disability Alliance on inclusion of people with disabilities in the COVID-19 response. 

Strengthening personal and family resilience: a literature review for the leprosy context

VAN'T NOORDENDE, Anna Tiny
KUIPERS, Kim
PEREIRA DSZ B
January 2019

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 A literature review was conducted to identify core elements of interventions to promote resilience in individuals and family members in the face of discrimination in the case of leprosy. A multi-phase adapted scoping review of English literature and a narrative review of the Portuguese language literature were carried out. Three main intervention focus areas in our review were identified: individual level, social/community level and system level.

 

Lepr Rev (2019) 90, 88–104

Report of the informal consultation on stopping discrimination and promotion inclusion of persons affected by Leprosy. New Delhi, 14–16 Nov 2017

COOREMAN, Erwin
WHO SEARO/Department of Control of Neglected Tropical Diseases
et al
2018

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An Informal Consultation on Stopping Discrimination and Promoting Inclusion of Persons Affected by Leprosy was held in New Delhi from 14 to 16 November 2017. Forty delegates with diverse backgrounds, experience and expertise enriched the discussions. Persons affected by leprosy brought to the table the challenges faced in daily life and suggested actions to be taken to reduce stigma and discrimination related to leprosy. Representatives of national programmes presented actions taken in their respective countries. The participants acknowledged the fact that stigma and discrimination related to leprosy still exists at a significant level. Information about stigma and discrimination related to leprosy needs to be collected in a more systematic manner to assess the magnitude of the problem and to further plan activities to reduce it.

Key recommendations from the consultation included counselling and reporting of incidences of discrimination. Efforts should be continued to inform facts about leprosy to the community.

The participants strongly recommended that leprosy programmes should adopt a ‘rights-based approach’ in line with the Sustainable Development Goals.

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  

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

Strengthening community and primary health systems for tuberculosis. A consultation on childhood TB integration

UNICEF
2016

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An estimated one million children between the age of 0-14 fall ill with tuberculosis (TB) every year, over 67 million children are infected and might develop active disease at any time. In 2013, the WHO with key partners launched the Roadmap for Childhood TB, outlining ten key actions to improve outcomes for children affected by TB, including improved data, development of child-friendly tools for diagnosis and treatment, engagement of key stakeholders at all levels of the system, and the development of integrated family- and community-centred strategies to provide comprehensive and effective services at the community level. A consultation on childhood TB integration took place in New York on June 1 and 2, 2016 to stimulate further the dialogue. The meeting addressed 7 topics: perspectives on childhood TB; country discussions on integration; integrating childhood TB interventions into service delivery; an opportunity for TB risk assessment at the community level: TB/HIV adapted integrated community case management (iCCM); childhood TB integration at the national, district, and community level; and financing childhood TB integration 

Perceived Needs Related to Social Participation of People with Leprosy-related Disabilities and other People with Disabilities in Cambodia: A Qualitative Study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
2014

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Purpose: The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community.

 

Methods: A cross-sectional study was conducted. People with leprosy-related disabilities were selected at home during field visits or at the rehabilitation centre for people with leprosy in Phnom Penh. People with locomotor disabilities were selected at the rehabilitation centre for persons with disabilities in Phnom Penh and Prey Veng. A pilot-tested, face-to-face semi-structured interview, with open and closed questions, and focus group discussions were used to investigate the perceived needs related to social and economic participation in the community. The interview was based on the International Classification of Functioning, Disability and Health (ICF) model of the WHO.

 

Results: Both groups of people with disabilities struggle with social exclusion in society. People with leprosy-related disabilities, in particular, live below the poverty line of US$ 0.5 per day. Most of the participants lived in rural areas. Participants raised the need for enhanced self-esteem and help in finding jobs. To overcome the difficulty in finding employment, they felt vocational training and microcredit to start businesses, were required.  

 

Conclusions: The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life. Rehabilitation centres provide vocational training and microcredit. Self-help groups have also proven effective in reaching poor people with disabilities in rural areas and improving social participation. The authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty. 

 

 

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

Lessons learned on inclusion of people with disability in the ICCO Gaibandha food security project for ultra poor women, 2009-2013

BRUIJN, Paulien
October 2013

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The Gaibandha Food Security Program is one of the first programs that mainstreams disability on a large scale, and the Food Security Project in Gaibandha was implemented in order to improve the food security situation of 40.000 women headed households. In April 2013 an internal evaluation took place on the disability mainstreaming process within the FSUP Gaibandha project. This report reflects related lessons learned about disability mainstreaming

World health statistics 2010

WORLD HEALTH ORGANIZATION (WHO)
2010

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This annual compilation of health-related data for the World Health Organization's 193 member states, includes a summary of the progress made towards achieving the health-related Millennium Development Goals (MDGs) and associated targets

Community-based rehabilitation : CBR guidelines|Supplementary booklet

WORLD HEALTH ORGANIZATION (WHO)
et al
2010

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"These community-based rehabilitation (CBR) guidelines are applicable to all disability groups. However, the need was identified for a supplementary booklet to highlight a number of issues which CBR programmes have historically overlooked, i.e. mental health problems, HIV/AIDS, leprosy and humanitarian crises...CBR is a strategy for community-based inclusive development which takes into account the principles of the Convention on the Rights of Persons with Disabilities, e.g. non-discrimination and the need to include all people with disabilities in development initiatives. Therefore, it is important that CBR programmes take steps to address issues which they have traditionally excluded, such as mental health problems, HIV/AIDS, leprosy and humanitarian crises. While these four issues have been chosen for inclusion in this booklet, CBR programmes are encouraged to think broadly about other issues (e.g. CBR and children, CBR and ageing) that are particularly relevant in their communities and which may be included in future editions of the guidelines"

Evidence for the effectiveness of rehabilitation-in-the-community programmes

VELEMA, Johan P
EBENSO, Bassey
FUZIKAWA, Priscila L
March 2008

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"The present literature review identified 29 reports from 22 countries in Asia, Africa and Central America reporting on the outcomes of rehabilitation-in-the-community programmes in low and middle income countries published between 1987 and 2007. Interventions included home visits by trained community workers who taught disabled persons skills to carry out activities of daily living, encouraged disabled children to go to school, helped find employment or an income generating activity, often involving vocational training and/or micro-credit. Many programmes had a component of influencing community attitudes towards disabled persons. The information collected shows that such programmes were effective in that they increased independence, mobility and communication skills of disabled persons, helped parents of disabled children to cope better and increased the number of disabled children attending schools. Economic interventions effectively increased the income of disabled persons although they rarely made them financially independent. CBR activities result in social processes that change the way community members view persons with disabilities, increase their level of acceptance and social inclusion and mobilise resources to meet their needs"
Leprosy Review, Vol 79, Issue 1

Inclusion of persons affected by leprosy in CBR

CORNIELJE, Huib
et al
March 2008

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This article presents reflections of community-based rehabilitation (CBR) professionals who attended a workshop prior to the 17th International Leprosy Congress. The professionals discussed the need to make their rehabilitation programmes, often focussed on serving the needs of persons affected by leprosy, more inclusive for other marginalised groups, in particular persons disabled through non-leprosy causes. They also reflected on the need to promote the self-organisation of people affected by leprosy and their inclusion of them also in general Disabled People’s Organisations (DPOs) either individually or through their organisations
Leprosy Review, Vol 79, Issue 1

Global trends in disability rehabilitation and their implications for leprosy programmes

THOMAS, Maya
THOMAS, Maliakal Joseph
March 2008

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This article explores the global trends in disability rehabilitation and the implications for leprosy programmes. It provides a brief summary the Biwako Millennium Framework of the Asia and Pacific decade to gain a better understanding of current issues and the implications for leprosy rehabilitation programmes
Leprosy Review, Vol 79, Issue 1

Invisible : the notion of disability in the context of HIV/AIDS in Kwazulu-Natal, South Africa

HANASS-HANCOCK, Jill
January 2008

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This thesis explores how the cultural context in which people think about disability and HIV exposes disabled people to a higher risk of infection. To investigate this issue, this work analyses the macro-cultural, micro-cultural and individual level of people in the KwaZulu-Natal region of South Africa. This resource would be useful for anyone interested in the cultural aspects of disability and HIV and AIDS

Fostering disability-inclusive HIV/AIDS programs in northeast India : a participatory study

et al
June 2007

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"This paper summarises findings from a participatory study which aimed to develop practical guidelines to make HIV programmes in the states of Manipur and Nagaland more disability-friendly...The objectives were to: 1) explore HIV risk and risk perception in relation to people with disability (PWD) among HIV and disability programmers, and PWD themselves; 2) identify HIV-related education and service needs and preferences of PWD; and 3) utilise findings and stakeholder consultation to draft practical guidelines for inclusion of disability into HIV programming in this region of India"

The participation scale : measuring a key concept in public health v4.1

VAN BRAKEL, Wim H.
et al
February 2006

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This is a report of a study, carried out in Nepal, India and Brazil, to develop a scale to measure (social) participation for use in rehabilitation, stigma reduction and social integration programmes. The report concludes that the Participation Scale is reliable and valid to measure client-perceived participation in people affected by leprosy or disability

Guidelines for inclusion of individuals with disability in HIV/AIDS outreach efforts

GROCE, Nora
TRASI, Reshma
YOUSAFZAI, Yousafzai
2006

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The strategies for interventions proposed here can provide a framework upon which disability advocates and HIV and AIDS advocates, educators and policy makers can begin to build interventions and support mechanisms for ‘at-risk’ disabled populations. To date, there have been few HIV and AIDS interventions that have directly targeted (or indirectly included) individuals with disability and almost none of these interventions have been systematically monitored or evaluated. The framework proposed here therefore, is intended only as a ‘first step’ in a series of publications on various aspects of disability-inclusive HIV and AIDS interventions and tool kits

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