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Inclusive client responsiveness: Focus on people with disabilities and older people

INTERNATIONAL RESCUE COMMITTEE (IRC)
July 2021

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Humanitarian actors recognize the lack of standard practice on the inclusion of older people and people with disabilities in humanitarian response as a current and critical gap in the sector. In recent years, the humanitarian sector has begun to more intentionally address these challenges. In response, the IRC has developed this Inclusive Client Responsiveness Guidance, which aims to address gaps in the IRC’s Client Responsive Programming specifically to strengthen inclusion of people with disabilities and older people. The Guidance consists of three sections to support staff in strengthening inclusion of people with disabilities and older people using the IRC’s Client Responsiveness approach:

Key concepts for designing inclusive feedback mechanisms such as accessibility and reasonable accommodation, to ensure that barriers are addressed, and feedback mechanisms are designed to be accessible to all.

Selection and design of inclusive feedback mechanisms that foster diversity and inclusion.

Monitoring access to feedback mechanisms of people with disabilities and older people through appropriate data collection and analysis.

The guidance also includes a set of resources for practical implementation, which are referenced throughout the document

UNHCR Facilitator’s Guide - Strengthening Protection of Persons

UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS (UNHCR)
July 2021

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This guide is designed to support UNHCR staff, partners and other stakeholders at field level to:

  • Recognize the protection concerns and capacities of refugees with disabilities and other persons with disabilities protected and assisted by UNHCR;
  • Apply the principles reflected in the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and UNHCR Guidance on Working with Persons with Disabilities to a range of programs and sectors;
  • Design immediate and long-term strategies to mitigate protection risks and promote the inclusion of persons with disabilities in UNHCR programming.

 

The four modules include:

  • Introductory module - Organizing an accessible and inclusive workshop (Module 1);
  • Promoting a rights-based approach to disability (Module 2);
  • Raising awareness about the impact of forced displacement on persons with disabilities (Module 3);
  • Learning key strategies to foster inclusion of persons with disabilities in forced displacement (Module 4). 

A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

Disability and Indigeneity: intersectionality of identity from the experience of Indigenous people at a global level

GILROY, John
UTTJEK, Margaretha
LOVERN, Lavonna
WARD, John
2021

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The authors of this paper have protested, fought, written extensively and represent the broader theoretical foundations of Indigenous and disability research by focusing on their standpoint perspectives informed by their ancestral spirits and knowledge. Based on our knowledge, cultures, and advocacy skills, this paper collectively explores and compares the intersections of Indigeneity and disability as an embodied identity in four countries: USA, Canada, Sweden, and Australia. This is accomplished by beginning with a brief synopsis of colonization to provide context and then examine the consequences of Western assimilation practices, including academic support of the Western status quo. The paper will then turn to the impact of both colonization and academic constructs on Indigenous epistemologies and ideas of self in disability dialogues. Finally, the paper will focus on Indigenous concepts of difference to not only advance Western disability discussions, but also as a way for Western dialogue to overcome its predilection to hierarchical binaries.

Social protection measures for persons with disabilities and their families in response to the COVID-19 crisis: An updated overview of trends June 2021

UNPRPD
INTERNATIONAL LABOUR ORGANISATION (ILO)
June 2021

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An overview of social protection measures announced in response to COVID-19 that have made specific reference to persons with disabilities. Rather than seeking to provide an exhaustive survey of measures, it identifies the main characteristics and trends for social protection responses that specifically sought to support persons with disabilities during the crisis. This brief focuses on specific crisis response measures adopted during the COVID-19 pandemic, acknowledging that persons with disabilities also benefited from access to health care and income support provided through pre-existing social protection schemes and programmes. The document provides an update to an initial analysis in May 2020 (UNPRPD, 2020).

 

This overview draws on a database of social protection measures specifically relating to disability, which is provided as an Annex to this paper. 

Disability-inclusive child safeguarding guidelines

WATTERS, Lauren
ORSANDER, Martina
May 2021

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Able Child Africa and Save the Children partnered to create the first international Disability-inclusive child safeguarding guidelines. These guidelines provide advice on how to plan for disability-inclusive child safeguarding, with practical solutions for organisations and practitioners working across development and humanitarian sectors on how to include children with disabilities in each step of the process.

For ease of reading, mini-read versions of the guidelines have also been developed. Part 1 outlines practical guidance for organisations. Part 2 outlines practical guidance for practitioners. For a full glossary and resource list, please refer to the full guidelines.

How do we support women and girls with disabilities to overcome stigma against them? - Evidence brief

MACTAGGART, Islay
FELIX, Lambert
May 2021

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Stigma refers to the labelling of an individual or group of people in a way that ultimately denies them full social acceptance and equality of opportunity, and is often the root cause of discrimination and exclusion experienced by people with disabilities. The negative implications of stigma are far-reaching and profound, including limiting opportunities for accessing health care, education or livelihoods; affecting quality of life  and wellbeing, and increasing the risk of violence and abuse. Stigma is intersectional, meaning that women and girls with disabilities often experience several layers of discrimination, on account of both their disability and their gender. Reducing stigma experienced by women and girls with disabilities is therefore critical to supporting their full inclusion in society on an equal basis as others.

 

Evidence was reviewed and recomendations are provided.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Equal access without discrimination - The Right to Disability-Inclusive Health

LIGHT FOR THE WORLD
May 2021

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The right to the highest attainable standard of health is fundamental, as health is a precondition for equal participation in society. People with disabilities continue to experience discrimination, barriers and rights violations in their access to health. This Issue Brief outlines how governments, international organisations and development actors can mainstream disability inclusion into their health strategies, services and interventions.

Disability-related stigma and discrimination in sub-Saharan Africa and south Asia: a systematic literature review

VIRUNDRAKUMAR, Bhavisha
STEPHEN, Kathy
JOLLEY, Emma
SCHMIDT, Elena
May 2021

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This systematic literature review was undertaken to understand the extent, quality and findings of published and unpublished literature on interventions designed to tackle disability-related stigma and discrimination in sub-Saharan Africa and south Asia.

The primary focus of this review was to identify studies that describe the effectiveness of interventions to tackle disability-related stigma and discrimination. The secondary set of objectives focused on understanding the individual, interpersonal, organisational, community and public policy factors that are associated with stigma and discrimination.

Accessibility audit costing

BROWN, Simon
SCOTT-PARKER, Susan
2021

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This excel sheet provides organisations a structured method to disaplay recommended activities for ensuring accessibility.

Towards zero leprosy. Global leprosy (‎Hansen’s Disease)‎ strategy 2021–2030

WORLD HEALTH ORGANISATION (WHO), REGIONAL OFFICE FOR SOUTH-EAST ASIA
April 2021

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The Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed through a broad consultative process with all major stakeholders during 2019 and 2020. Valuable inputs were provided by national leprosy programme managers, technical agencies, public health and leprosy experts, funding agencies and persons or members of communities directly affected by leprosy.

The Strategy aims to contribute to achieving the Sustainable Development Goals. It is structured along four pillars:

(‎i)‎ implement integrated, country-owned zero leprosy road maps in all endemic countries;
(‎ii)‎ scale up leprosy prevention alongside integrated active case detection;
(‎iii)‎ manage leprosy and its complications and prevent new disability; and
(‎iv)‎ combat stigma and ensure human rights are respected. Interruption of transmission and elimination of disease are at the core of the Strategy

Leave no girl with disabilities behind: Ensuring efforts to advance gender equality in education are disability-inclusive.

DIAMOND, Gloria
CASTRES, Pauline
April 2021

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This advocacy brief from the UN Girls’ Education Initiative (UNGEI) and Leonard Cheshire draws attention to the main barriers to education for girls with disabilities, in the context of major opportunities for advocacy and tangible change in 2021.  The recommendations outlined are targeted at world leaders, governments, ministries, UN agencies and NGOs. They offer a framework for rights-based action and principles towards gender-responsive and inclusive education, to ensure that no girls with disabilities are left behind. 

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

How can we overcome barriers to accessing rehabilitation for persons with disabilities in LMIC? - Evidence brief

MACTAGGART, Islay
April 2021

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Rehabilitation is described as a set of measures to optimise the functioning of individuals, and is important for wellbeing, participation and quality of life. Rehabilitation includes diagnosis, treatments, surgeries, assistive devices and therapies. Not all people who need rehabilitation are people with disabilities, and not all people with disabilities need rehabilitation. The World Health Organisation (WHO) recently estimated that 1 in 3 people globally (2.41 billion people) would benefit from rehabilitation: this number has increased nearly two thirds since 1990, due to population growth and increase in Non-Communicable Diseases (NCDs). In contrast, there are estimated to be less than 10 skilled rehabilitation practitioners per million population in Low and Middle Income Countries (LMICs), and only 5 – 15% of people in need of assistive devices are thought to have received them.

 

Evidence is reviewed and recommendations provided

Family Planning for Women and Girls with Disabilities

Dr FRASER, Erika
CORBY, Nick
MEANEY-DAVIS, Jessie
2021

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This is an updated evidence review looking at the evidence on factors affecting access to and uptake of family planning for women and girls with disabilities in low- and middle-income countries and the evidence on good practice on increasing full free and informed contraceptive choice for women and girls with disabilities.

 

Query:

1) What is the evidence on factors affecting access to and uptake of family planning for women and girls with disabilities in low and middle income countries, highlighting examples from FP2020 commitment-making countries?

2) What is the evidence on good practice on increasing full free and informed contraceptive choice for women and girls with disabilities – from the same countries or elsewhere? 

Taking a Disability-Inclusive Approach to Pandemic Responses

WICKENDEN, Mary
THOMPSON, Stephen
ROHWERDER, Brigitte
SHAW, Jackie
2021

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The Covid-19 pandemic has affected communities globally, yet the impact has not been equal. People with disabilities were already often living with severe disadvantage and marginalisation and, as predicted by many disability-focused agencies, Covid-19 has exacerbated these inequalities. Emerging evidence from Inclusive Futures, a UK Foreign, Commonwealth & Development Office (FCDO)-funded programme, highlights the catastrophic emotional and material impacts on people with disabilities in Nepal and Bangladesh. To respond to and plan for future crises, decision makers should consult inclusively with both organisations of people with disabilities (OPDs) and people with disabilities themselves.
 

Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

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Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

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