For many years, persons with disabilities have reported a lack of access to basic humanitarian services. We also know, as a humanitarian community, that older persons, women, girls, boys and men with disabilities are at particular risk of discrimination, exploitation, violence, including sexual and gender-based violence, and exclusion from support and services in humanitarian contexts. At the same time, 92% of humanitarian actors have acknowledged that persons with disabilities are not properly included in humanitarian responses+1. Disability in humanitarian context: views from affected people and field organisations, Handicap International, 2015 (https://handicap-international.ch/sites/ch/files/documents/files/disability-humanitarian-context.pdf).. Despite a growing body of tools and guidance, humanitarian actors still lack the capacity to understand how disasters and conflict affect the lives of persons with disabilities, as well as how their own responses can be adapted to better address their needs.
The recent UN Flagship Report on Disability and Development 2018+2. Realization of the Sustainable Development Goals by, for and with persons with disabilities. UN flagship report on disability and development 2018 (www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2018/12/UN-Flagship-Report-Disability.pdf). shows that persons with disabilities continue to face barriers and are under-represented in decision-making processes. Due to poor identification, registration and access to feedback and complaints mechanisms, persons with disabilities are often under-identified and no information is collected on the barriers they face. To address this gap, the UN report calls on states to ensure the implementation of accountability mechanisms in accordance with the UN Convention on the Rights of Persons with Disabilities (CRPD). The recently published Inter-Agency Standing Committee (IASC) Guidelines on inclusion of persons with disabilities in humanitarian action+3. See https://interagencystandingcommittee.org/iasc-task-team-inclusion-persons-disabilities-humanitarian-action/documents/iasc-guidelines. also emphasise that mechanisms for accountability must be accessible to persons with disabilities and must consider their requirements.
IRC Client Responsive Programming
Participation of and accountability towards all people we serve – our clients – is central to the International Rescue Committee (IRC)’s strategy and our work on Client Responsiveness. The IRC’s approach is described in our Client Responsive Programming Framework,+4. For more on the IRC’s Client Responsiveness Framework, see https://www.rescue.org/resource/irc-client-responsive-programming-framework which maps out how the IRC delivers on high-level goals and commitments, such as within the IASC Results Group 2 on Accountability and Inclusion, the Grand Bargain and the Core Humanitarian Standard (CHS). The IRC implements Client Responsive Programming throughout all aspects of programmatic decision-making by putting in place the mechanisms to collect, analyse and respond to client feedback, and to use that feedback to inform our decisions. The IRC has also identified and invested in a number of critical internal and external enabling factors, which support the process of consultation and collaboration with clients and communities.
A CHS Self-Assessment, conducted in 2018, highlighted areas for improvement for the IRC, including consultation with marginalised groups and data disaggregation (including by disability). At the same time, IRC staff were requesting additional guidance and support on how to engage clients with disabilities, and how to respond to their feedback.
To address these challenges, the IRC initiated a two-year project (April 2019–March 2021) in north-west Syria and Tanzania, funded by the Swedish International Development Cooperation Agency (SIDA), to strengthen the inclusion of persons with disabilities in the IRC’s Client Responsiveness approach. By being more inclusive of persons with disabilities, the IRC also aims to strengthen institutional and global standards and publish tools and guidance to ensure that the views of persons with disabilities are included in accountability mechanisms.
To evaluate existing guidance, tools and methods through which the IRC collects feedback and supports clients’ participation, we completed a desk review of inclusive feedback mechanisms during the first year of the project. We then carried out a series of consultations with experts in inclusion and Accountability to Affected Populations (AAP), IRC staff in the pilot locations and clients with disabilities, to identify opportunities and gaps around inclusion of persons with disabilities in feedback mechanisms. The scoping study was structured according to the principles established in Article 3 of the CRPD.
To ensure a participatory and collaborative process, we established an Advisory Committee to guide, support and promote the project throughout all its phases. The Committee includes representation from mainstream and disability-specialised INGOs, research institutions, organisations working on quality and accountability and, first and foremost, Organisations of Persons with Disabilities (OPDs), which constitute over 50% of the committee. The IRC developed a process for the provision of reasonable accommodation+5. Reasonable accommodation requires individuals and institutions to modify their procedures or services (accommodate), where this is necessary and appropriate, either to avoid imposing a disproportionate or undue burden on persons with disabilities or to enable them to exercise their human rights and fundamental freedoms on an equal basis with others. during interviews and consultations, following the guidance provided by the IASC Guidelines.
This is the first time that this range of organisations has worked together in a project on disability-inclusive AAP, with the expertise of persons with disabilities themselves at the centre. The Advisory Committee helped to shape the scoping study criteria and provided insights on feedback and complaints mechanisms regarding disability inclusion. The IRC interviewed nine members of the Advisory Committee, and reflected their inputs in the consultation process, scoping study and recommendations.
Several members advocated for increasing the accessibility of informed consent language and forms that can be processed by persons with disabilities during the consultations, to ensure they were truly participatory.
Informed consent is often provided through family members. Each adult person should be able to provide free and informed consent if communication is made accessible … You can use easy-to-read language, and large fonts in documents. Some people may need more time, so sharing the forms in advance or making time enough to read them, and giving the option to reach back if there are questions or concerns around the interview.
– (Advocate for the rights of women and girls with disabilities; female; visual disability)
We addressed this recommendation by developing an easy-to-read Guidance and Consent Form, which was used in the remaining consultations. Interview and focus group discussion guides were developed for each of the consultations, including easy-to-read versions produced with the Lebanese Association for Self-Advocates, a member of the advisory group with experience in this area.
Gaps and good practice
This thorough engagement with OPDs, IRC staff and clients with disabilities provided the IRC with extremely valuable reflections on the Client Responsiveness approach, as well as broader sector practices on AAP initiatives and good practices implemented in the pilot countries. Key findings highlighted the need to:
- Deepen understanding of rights-based approaches to disability, including concepts such as universal design, accessibility, discrimination and reasonable accommodation. Current services and strategies to respond to feedback collected from persons with disabilities reflect an understanding of disability that is closer to a medical model, focusing on a person’s health condition and impairment rather than the rights-based model, which focuses on the interaction of this condition/impairment with a multitude of influencing factors in the environment. When a client with a disability cannot access a service or feedback channel, reasonable accommodations to address individual situations of lack of access should be provided. However, in practice staff with inadequate training tend to think the issue lies with the client. This means they assume that addressing the barrier by providing reasonable accommodation is not the IRC’s responsibility, or if it is, they assume that it falls to another team with more specialised expertise (e.g. protection, health or a specialised disability partner organisation). Although anecdotal evidence of reasonable accommodation was reported by the north-west Syria team, this is not provided in a systematic way and the scoping study highlighted that inclusion and accessibility for persons with disabilities needs to be further mainstreamed across all sectors.
Going forward, we will develop content on disability inclusion to include in the existing tools package on Client Responsiveness and in-person training guides. In one case, an adult man with a disability reached out to the IRC asking about a livelihoods project he had heard about and, when asked if he could access the centre where the activities take place, he replied that he could not reach that area due to difficulties with his mobility. A team was sent to his household to make an assessment there, and he could then join the programme with additional support provided to reach the training centre.
- Strengthen data collection, including disaggregation of data by disability and age. Findings show that data collected as part of Client Responsive Programming is only disaggregated by sex, without systematic disaggregation by age and disability, and analysis does not look at barriers to access for persons with disabilities. Field staff reported during interviews that, without disaggregated data, they cannot verify how efficient efforts to ensure inclusive design of the Client Responsive Programming have been in ensuring accessibility. Systematically collecting data on age and disability status would enable monitoring of access to and use of feedback mechanisms for persons with disabilities, as well as identifying preferences, risks and barriers to access. Up-to-date standards recommend, at a minimum, disaggregation by sex, age and disability, recognising that these factors are present in any given population and can provide valuable information on who is at heightened risk.+6. For example, The Sphere Standards, pp. 13 and 56: see https://spherestandards.org/. Standardised tools also exist to collect data on disability status, such as the Washington Group questions.+7. Available at https://www.washingtongroup-disability.com/. In the second year of the project, we will further integrate and strengthen the use of the Washington Group questions in feedback forms and registry.
- Introduce a regular assessment of safety and accessibility of the IRC’s feedback and complaints mechanisms and strengthen collection of data on barriers and enablers to ensure that persons with disabilities can provide feedback, and that their views and priorities are understood. Available and up-to-date legal frameworks, standards and guidance suggest going further than data disaggregation and collecting information on environmental, attitudinal and institutional barriers, as well as enablers. In interviews, IRC staff and external experts recommended integrating practical information on accessibility in all Standard Operational Procedures (SOPs) for client feedback mechanisms, and developing a method and tools to assess the accessibility of the channels being used (including identifying physical, information and attitudinal barriers). Field practices in both the Tanzania and north-west Syria Country Programmes addressed this gap to some extent by having dedicated SOPs for child-friendly mechanisms (including children with disabilities). The north-west Syria programme has developed leaflets, a video and a song to encourage the use of the feedback mechanism. In Tanzania, a question on identifying children facing barriers to accessing services is included in the guidance for child-friendly focus group discussions. During the project we went further and developed an accessibility assessment tool in collaboration with the north-west Syria Country Programme. It is worth keeping in mind that a standardised method for collecting information on barriers in humanitarian action is not yet available. Results of the audit highlighted that women with disabilities experienced challenges accessing safe transportation which prevented them from using feedback mechanisms. This was integrated into a planned safety audit, resulting in a ‘Safety and Accessibility Audit’ tool. This recognises that accessibility is a factor that can increase or decrease the level of safety of a service. The assessment tools used for this audit will be further refined during the second year of the project.
- Develop methods to identify programmatic changes related to accessibility based on analysis and use of feedback from clients with disabilities. Client Responsiveness includes an established process to ensure clients’ feedback is responded to and addressed in a timely manner, and there is a requirement to ensure that programmatic changes are made. When it comes to disability, interviews with field staff highlighted that decisions on how feedback is analysed and what type of programmatic responses are implemented is based on staff knowledge, and there is a lack of guidance on how to address problems of access and barriers reported by persons with disabilities. This means that changes are happening on an ad hoc basis.The use of disaggregated data and data on barriers is essential to put in place mitigation measures to address risks and barriers as highlighted in available guidance (including the IASC Guidelines on inclusion of persons with disabilities in humanitarian action) and reinforces the rights-based understanding of disability. A contingency budget line is necessary to ensure programmatic adaptation based on feedback from clients with disabilities, and to address individual situations of lack of access. Around 3–7% of the budget is recommended in existing standards and guidance and by experts in key informant interviews.+8.Including the IASC Guidelines (p. 29). During the first year of the project, we developed a short guidance document with tips on inclusive budgeting to support staff in understanding the principles required, dedicating budget for accessibility and reasonable accommodation, and finding ways to use this budget. This document will be further refined during the second year of the project.
- Improve communication with clients with disabilities to demonstrate how feedback influences programmatic decisions. The current approach to Client Responsive Programming has dedicated recommendations on closing the loop to encourage IRC staff to communicate back with IRC clients how their feedback has been used, the types of response put in place as a result, and creating room for discussion on what has been decided. The north-west Syria Country Programme has developed an internal communication newsletter called Client voices. The newsletter, shared via email with Country Programme staff, identifies examples where feedback from clients has made a positive difference. For example, complaints from potentially eligible clients that were not included in a cash and voucher programme led to the disbursement of additional funds to assist some of them. Going forward, we will proactively monitor the participation of clients with disabilities in this process, with data disaggregated by sex, age and disability, by engaging OPDs and communicating back to them the outcome of their feedback.
[Clients with disabilities] feel more secure and they know they are part of the solution, of finding a solution. In the Bekaa Valley, for example, their feedback helped to have money to get a lift in a clinic. A lot of people got to benefit from this, and this changed as well the perception of the population of older people and people with disabilities. – (NGO disability and older age advisor, female)
By adapting our approach to Client Responsive Programming based on the findings of the scoping study, the IRC aims to produce guidance and tools that can be used by the humanitarian sector overall to improve and promote inclusive feedback mechanisms. However, as reflected by the participatory approach taken in this project, gaps and challenges will not be addressed by guidance and tools alone, but will require a shift in how international agencies make programming decisions, moving away from a top-down approach. At the IRC we have renewed our commitment under our new organisational strategy – Strategy 100 – to putting our clients at the centre of everything we do. Informed by consultations with our clients, partners and frontline staff, the IRC’s new strategy emphasises the need for stronger involvement of clients in driving improvements to programme quality, describing a set of ambitions to strengthen our responsiveness to clients’ priorities and preferences, and more meaningfully engaging them in decision-making about the programming we deliver.
Pauline Thivillier is Inclusion Technical Advisor at the IRC. Valentina Shafina is Client Responsiveness Technical Specialist at the IRC. This article is based on a scoping study drafted by Ricardo Pla Cordero as part of the IRC’s Disability Client Responsiveness Project.