Advancing rights and inclusion of persons with disabilities in humanitarian action: a donor perspective

Abstract

Despite increasing awareness and high-level commitments on disability inclusion by humanitarian donors and actors, persons with disabilities continue to be ignored from humanitarian assistance. Rights and inclusion of persons with disabilities are a foreign policy priority for the Ministry for Foreign Affairs of Finland, including in humanitarian assistance. The primary means for donors, such as Finland, to promote disability-inclusive humanitarian action are funding and advocacy. Trade-offs between flexible and earmarked funding for disability inclusion are challenging when reporting on results is inadequate. This article shares examples on how the Ministry promotes inclusion of persons with disabilities in humanitarian action and explores challenges that need to be resolved by stakeholders.

Introduction

The rights and inclusion of persons with disabilities are a priority in Finland's foreign and security policy.¹ Finland promotes the implementation of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) in its human rights policy, development policy and cooperation and humanitarian assistance and in particular emphasizes intersections among disability, gender and the rights of women and girls with disabilities. In addition, disability inclusion is a cross-cutting objective in Finland's development policy. To that end, the Ministry for Foreign Affairs of Finland (MFA) has integrated minimum criteria for ensuring that rights of persons with disabilities are considered across sectors and funding instruments. These include disability-inclusive context analyses, preventing and mitigating risks to rights of persons with disabilities, removing barriers to participation and ensuring the collection of disability-disaggregated data. In its humanitarian assistance, the MFA advocates for the rights of persons with disabilities and their access to services essential for their survival, protection and recovery during and in the aftermath of crises.

The focus on persons with disabilities is the outcome of powerful advocacy from the Finnish disability rights movement combined with strong ministerial-level support for disability-inclusive international cooperation. Finnish organizations of persons with disabilities (OPDs) have a long history in promoting the human rights of persons with disabilities, both domestically and internationally. As a result of this advocacy, supporting and collaborating with OPDs is a cornerstone of Finland's international cooperation. Many of these Finnish OPDs implement development cooperation programmes with funding from the MFA. For example, Disability Partnership Finland² supports local OPDs in the Global South to advocate for and promote rights of persons with disabilities in their countries. The Abilis Foundation is a Finnish non-governmental organization that grants project funding to grassroots OPDs and small businesses run by persons with disabilities in developing countries.

Several studies show the disproportionate impacts of crises on persons with disabilities and the barriers that persons with disabilities face in accessing humanitarian services.³ In 2012, the MFA commissioned a report from the Abilis Foundation. In that report, Abilis developed recommendations on how to better address the rights of persons with disabilities in Finland's foreign policy.⁴ The report identified gaps in humanitarian assistance that further exacerbated the negative impacts of crises, such as the lack of accessibility in preparedness and the lack of coordination in the humanitarian sector to address the needs of persons with disabilities. At the time, these findings confirmed observations made by MFA officials during monitoring visits in humanitarian contexts that, despite efforts to focus on the needs of those considered to be in the most vulnerable situations, the situation of persons with disabilities in humanitarian crisis had not improved in the last decade.

For decades, humanitarian actors have recognized the vulnerability of persons with disabilities in humanitarian crises. As a result, disability has traditionally been categorized as one vulnerability factor among others and assigned as a targeting criterion for prioritized assistance, including provision of shelter, water and food. Insufficient understanding and application of the social model have prevented humanitarian actors from recognizing how to improve conditions for persons with disabilities in humanitarian contexts. With the social model, disability is recognized as a social construct in which disability is the result of the intersection of impairments with environmental and attitudinal barriers that hinder participation of persons with disabilities on an equal basis with others. Under the social model, the responsibility lies with society to dismantle barriers that prevent full participation of persons with disabilities. This means that without a restructuring of humanitarian practices, policies and attitudes to remove barriers, persons with disabilities remain invisible and their actual needs and right to equality overlooked.

During the 2010s, the MFA's understanding of disability in humanitarian contexts shifted towards recognizing disability as a social construct and a human rights issue. Finland's current humanitarian policy, which was revised and launched in 2019, explicitly states that improving rights of persons with disabilities in crisis contexts is a priority and criterion for funding.⁵ Finland's humanitarian action has long taken a needs-based approach and has emphasized the importance of neutrality and non-discrimination. In the past decade, Finland has focused on disability-inclusive humanitarian action and actively promoted the protection of and respect for the rights of persons with disabilities in crises settings.⁶ Finland's current humanitarian policy states that the MFA will work towards ensuring that all humanitarian actors consider the rights and needs of persons with disabilities and ensure their full participation.

Donors have a number of means to promote priority issues. This article discusses the primary influencing channels for a donor to ensure that policy priorities are addressed by implementing partners, namely through funding and advocacy.⁷ Funding allocation processes entail quality assurance, eligibility and criteria in grant processes to guide funding recipients. A donor's influencing of multilateral organizations through funding includes decisions on replenishments, and core and earmarked budget allocations.⁸ International recruitment, secondments and staff placements are considered part of the MFA's resource contributions to multilateral organizations. Advocacy can include policy influencing, dialogue with funding recipients and awareness raising in national and international platforms. These can take place in corporate governance bodies such as boards of multilateral organizations, through formal channels such as bilateral consultations with donors and organizations, information channels such as joint events and meetings of like-minded groups, among others.⁹ In its humanitarian policy and assistance, Finland has aimed to support key initiatives that would drive disability-inclusive humanitarian action. Often these are anchored in existing commitments or processes that advance disability inclusion.

The results and impact of Finland's funding and advocacy are difficult to assess and verify. A recent external evaluation of Finland's humanitarian assistance reported that Finland is a valued donor and that Finland's policy dialogue on non-discrimination and inclusion of persons with disabilities is found by partners to be relevant and valuable.¹⁰ The evaluation also found that Finland's humanitarian assistance has led to some significant normative results on disability inclusion, but that data on humanitarian results are lacking. Country-level results related to disability are not yet available.¹¹ According to the latest The State of the Humanitarian System study, gaps between policy commitments on disability-inclusive humanitarian action and their operational implementation and gaps in reporting of results appear to be systemic throughout the humanitarian sector, as although awareness among humanitarian actors on disability inclusion has increased over the last years, significant gaps remain in operational implementation.¹²

This article aims to outline the primary means that Finland has used to promote disability-inclusive humanitarian action, while recognizing that the effectiveness of these measures remains unclear. Therefore, this article also discusses some of the main challenges faced by donors in advancing protection priorities.

Finland's funding and advocacy to promote and advance rights and inclusion of persons with disabilities in humanitarian assistance

This section describes some of the main actions that Finland has taken to promote the rights and inclusion of persons with disabilities in humanitarian assistance.

The UN CRPD as a guide for Finland's international cooperation

The CRPD guides Finland's international cooperation on rights and inclusion of persons with disabilities. Key CRPD articles relevant to Finland's foreign policy are Articles 11 and 32.

Article 11 on situations of risk and humanitarian emergencies states that:

States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.¹³

Article 32 on international cooperation states that:

1. 1. States Parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities. Such measures could include, inter alia:

   1. (a) Ensuring that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities;

   2. (b) Facilitating and supporting capacity-building, including through the exchange and sharing of information, experiences, training programmes and best practices;

   3. (c) Facilitating cooperation in research and access to scientific and technical knowledge;

   4. (d) Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies.

2. 2. The provisions of this article are without prejudice to the obligations of each State Party to fulfil its obligations under the present Convention.¹⁴

Finland ratified the CRPD in 2016. Finland is currently in its second National Action Plan for the CRPD's implementation.¹⁵ The National Action Plan stipulates how Finland will implement the CRPD's various articles, including Articles 11 and 32. For example, to operationalize the fulfilment of rights and inclusion of persons with disabilities in its human rights-based foreign and security policy, the National Action Plan includes objectives on raising awareness and taking the rights of persons with disabilities into account in humanitarian crises.

Finland applies a two-track approach, employing both targeted measures and mainstreaming.¹⁶ Finland does not have a dedicated disability-inclusion strategy for international cooperation, but actively advances rights of persons with disabilities in the majority of its funding instruments. Still, gaps in implementing disability inclusion in some funding mechanisms persist. Through internal training on non-discrimination and disability issues, as well as integration of disability inclusion in planning, quality assurance and reporting processes, the MFA works towards more consistent implementation. Continuous capacity building is important both within the MFA and externally to improve understanding of CRPD commitments.

Finland's promotion of the rights and inclusion of persons with disabilities in humanitarian action in its global advocacy

Finland has become a significant global advocate for inclusion of persons with disabilities in global events and platforms, including in influencing the policies of multilateral organizations. The MFA prioritizes disability inclusion in its policy influencing, both in diplomacy in international fora and in funding multilateral humanitarian organizations. A recent external evaluation commissioned by the MFA on its policy influencing activities in multilateral organizations found that “Finland was considered a defender of human rights … and to possess experience, expertise and credibility especially related to … the rights of persons with disabilities”.¹⁷

An example of the MFA's advocacy in promoting rights and inclusion of persons with disabilities in the humanitarian sector is showcased in Finland's active role in the lead up to and at the World Humanitarian Summit held in 2016. In particular, Finland played an important role as part of the core group that prepared the Charter on the Inclusion of Persons with Disabilities in Humanitarian Action – a significant result for Finland's advocacy and a huge milestone for disability-inclusive humanitarian action. Leading up to the Summit, the MFA worked with other States, UN agencies, civil society and OPDs, as well as with International Disability Alliance – an instrumental partner providing technical assistance and expertise – to ensure that disability inclusion was given prominence. This ground-breaking Charter was launched at the Summit and is considered one of the most important outcomes of the event, with endorsement to date from more than 260 stakeholders, including governments and organizations.¹⁸

The Charter outlines concrete solutions to improve the situation of persons with disabilities in humanitarian crises. For example, the Charter calls for inclusive policies and guidelines that “based on existing frameworks and standards, [support] humanitarian actors to improve inclusion of persons with disabilities in emergency preparedness and responses”.¹⁹

The Charter has, in turn, shaped Finland's humanitarian policy, in which non-discrimination, participation, rights and inclusion of and accessibility for persons with disabilities are central.²⁰ In addition, Finland's humanitarian policy states that results should be disaggregated by age, sex and disability for all humanitarian projects and operations implemented with MFA funding. When funding Finnish non-governmental organizations, the MFA applies quality-assurance criteria to grant proposals: applicants are required to describe in both grant applications and final reports how they address the rights and needs of persons with disabilities. The aim is to guide organizations to ensure better inclusion of persons with disabilities in their projects and programmes.

The MFA has also worked to further support operationalization of the Charter. To that end, the MFA, together with other government donors, has provided financial and technical support for the development of system-wide inter-agency guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action, which were later endorsed by the Inter-Agency Standing Committee (IASC) in 2019.²¹ To ensure the voice and participation of persons with disabilities, these guidelines were developed with the active engagement of persons with disabilities and their representative organizations and aim at driving change and transformation across all sectors of humanitarian action. The impact and use of the guidelines among humanitarian actors have not yet been assessed.

Policy influencing for the rights and inclusion of persons with disabilities is central in Finland's humanitarian work

Finland, like other donors, raises policy priorities in its bilateral consultations with and on governing bodies of multilateral humanitarian organizations. Together with MFA headquarters, Finland's missions in New York, Geneva and Rome play a key role in this kind of policy influence. One of the major achievements is a joint ministerial letter of support for a UN system-wide approach to disability inclusion, which the MFA as penholder drafted with like-minded States, addressed to the UN Secretary-General in 2018 – and which played a pivotal role in the process that eventually led to the UN Disability Inclusion Strategy (UNDIS).²²

The UNDIS launched in 2019 and is a UN-system-wide policy and action plan for strengthening disability inclusion. It includes annual mandatory reporting against accountability indicators for all UN organizations. In addition to Finland's work that helped lead to the UNDIS, in 2021 Finland also contributed funding to the implementation of the Strategy. Finland's New York mission continues to follow up with implementation of the Strategy across the UN system.

The MFA missions maintain dialogue with headquarters of international organizations, which receive Finland's regular budgetary, unearmarked support, as well as with other, like-minded donors. The MFA headquarters, together with the permanent missions in New York, Geneva and Rome, consistently includes disability inclusion as one of the agenda items in dialogue and updates on current issues and progress made in humanitarian affairs. For example, the Rome mission has systematically and actively advocated for disability inclusion at the World Food Programme (WFP). According to the external evaluation commissioned by the MFA on its work to influence policy, “in the case of the WFP, the MFA was perceived as very active in influencing the executive board during the entire evaluation period, highlighting consistently Finnish policy priorities such as the needs and rights of women and girls, the rights of persons with disabilities”.²³ The Rome mission also maintains dialogue on the implementation and results of the WFP's road map on disability inclusion for 2020–2021. Although the MFA does not typically earmark funding, it invested in the road map with funding for the WFP's dedicated trust fund.²⁴ Earmarked funding has provided a deeper and more specific dialogue with the WFP and has led to better reporting on progress and on the results of the road map.

Advocacy extends to MFA-supported and -organized events with other donors at international forums to promote and raise awareness on disability inclusion. For example, in Geneva, the Permanent Mission of Finland to the UN, together with Australia and the United Kingdom, has co-chaired the Group of Friends of the Charter on Inclusion of Persons with Disabilities in Humanitarian Action since 2016. The Group of Friends is an informal network of States supporting the strengthening of inclusion of persons with disabilities in humanitarian action and was founded to advance the implementation of the Charter. Finland and the Group of Friends, in collaboration with OPDs and international humanitarian organizations, regularly organize events to increase the understanding of the importance of disability inclusion in humanitarian action. These events include ones, for example, at the UN Office for Coordination of Humanitarian Affairs’ (OCHA) Humanitarian Networks and Partnerships week, the UN Economic and Social Council Humanitarian Affairs Segment and at the 33rd International Conference of the Red Cross and Red Crescent. Events aimed at raising awareness are important for improving understanding of disability issues and for creating space for discussion and ideas. Still, it is difficult to assess the effects or impacts of such events, as it is not feasible to track how participants use the information they have gained.

However, one of the challenges with policy influencing is that policy commitments do not always translate into concrete advancement of the rights and inclusion of persons with disabilities. Although humanitarian actors agree that addressing the needs of persons with disabilities is central to the humanitarian principle of impartiality, many challenges persist in realizing the meaningful inclusion of persons with disabilities.²⁵ For example, Finland served on the UN Central Emergency Response Fund (CERF) Advisory Group from 2017 to 2020. While in that role, Finland successfully advocated for persons with disabilities to be included as one of the four priority areas in CERF,²⁶ which is a humanitarian fund intended to complement humanitarian funding mechanisms by providing grants for rapid response and underfunded emergencies. However, an independent review indicates the challenges in translation of policy commitments to concrete results.²⁷ The review examined the implementation of the four priority areas (support for women and girls, programmes targeting persons with disabilities, education in protracted crises, and other protection aspects), including looking at, for example, how the priority areas were incorporated into the CERF programme cycle and how implementing partners reflected the priority areas in service delivery. Findings showed that CERF funding had increased in some of the priority areas (education and protection). Although the focus in CERF on persons with disabilities had increased attention to provision of assistance to persons with disabilities, mainstreaming disability inclusion had not yet made much progress. Some of the challenges identified in the report that undermined progress were a system-wide lack of tracking funding and mainstreamed activities as well as a weak capacity to identify and assist persons with disabilities. The report also stated that there was broad agreement on the relevancy of the priority areas, but nevertheless humanitarian actors felt that the priority areas were “yet another demand on the already over-stretched resources of humanitarian actors rather than fundamental to ‘do no harm’ and for effectiveness”.²⁸

Strategic investments as a source of support for humanitarian organizations’ work on disability inclusion

In addition to Finland's provision of flexible funding, the MFA has allocated funding to specific investments intended to accelerate disability-inclusive humanitarian action, such as toward the IASC guidelines, toward disability-inclusion specialists and toward dedicated trust funds for disability inclusion.

Key investments towards disability-inclusive action include funding for specific positions at international humanitarian organizations, such as disability-inclusion specialists and junior professional officer posts. Although the impacts of such investments have not been assessed, through dialogue with the organizations, recruitment of thematic experts has proven to concretely support changes within the organization. Finland's collaboration on disability-inclusive humanitarian action with the UN High Commissioner for Refugees (UNHCR) has a long history. With funding from Finland, the UNHCR recruited a disability-inclusion specialist for 2014–2016. Collaboration with the UNCHR continued in the drafting of the Global Compact on Refugees in 2018. At the first Global Refugee Forum, the MFA, together with the UNHCR, drafted a guidance document on commitments on disability inclusion. The MFA ensured that inclusion of persons with disabilities and respect for the rights of persons with disabilities were reflected throughout the document. In preparations for the Global Refugee Forum, the MFA contributed to the webinars that the UNHCR and the International Disability Alliance organized for regional OPDs. Finland pledged at the Forum to support the UNHCR in its efforts on disability inclusion in forced displacement settings, and has done so by, for example, funding a junior professional officer post.

In order to build awareness and discussion among donors, protection issues, including disability inclusion, were made one of the priority themes during Finland's co-presidency of the Good Humanitarian Donorship Initiative, which is an informal group of forty-two donors working together for more effective and ethical humanitarian assistance. The MFA commissioned a study in 2022 to explore whether flexible, unearmarked funding combined with advocacy is an effective means to ensure disability-inclusive humanitarian action. Findings of the study were presented in the Good Humanitarian Donorship meetings for discussion on how donors can best work with humanitarian organizations to improve the access of persons with disabilities to humanitarian assistance in contexts where unearmarked funding combined with advocacy has not yielded desired results. The main outcomes of the study were that disability inclusion was visible in strategies, but this had not yet translated into implementation in country operations, and the lack of systems to track funding and to monitor disability-inclusive activities makes it difficult to report results.²⁹

Concrete results of these investments may be visible only after many years, and assessing the impact of Finland's contribution is likely to be difficult, as global processes are slow and changes in large organizations incremental. Also, disability inclusion tends to be one of many competing protection priorities, thus potentially making it even more challenging to achieve concrete results. Lack of disability data collection further weakens reporting progress on disability-inclusive implementation.

Increased awareness as a contributor to strategic action in humanitarian organizations – despite persistent implementation gaps

Clearly, a significant shift in awareness of the rights and needs of persons with disabilities has occurred in recent years. Since the adoption of the CRPD in 2006, but particularly since the Charter on Inclusion of Persons with Disabilities in Humanitarian Action, international humanitarian organizations have increasingly paid attention to the inclusion of persons with disabilities through both targeted and mainstreaming measures. Targeted measures include, for example, activities to identify persons with disabilities in humanitarian registration processes, and the provision of physical rehabilitation and assistive devices. Mainstreaming disability-inclusive measures can mean, for example, removing barriers, such as in accessibility of the built environment or of communications and information, for persons with disabilities to access services, and ensuring the participation of persons with disabilities in programming.

Many humanitarian organizations have adopted their own organization-specific strategies and guiding documents. For example, the International Red Cross and Red Crescent Movement adopted its Strategic Framework on Disability Inclusion in 2015,³⁰ and the International Committee of the Red Cross adopted its Vision 2030 on Disability in 2020.³¹ The UNHCR launched its Disability Inclusion Action Plan 2020–2024³² as part of implementation of the UNDIS.³³ Nevertheless, persons with disabilities still face barriers in accessing humanitarian services and continue to be left behind in humanitarian crises, as the 2022 humanitarian response to Russia's invasion of Ukraine has shown.³⁴ While there is a recognition of the importance of disability inclusion in humanitarian organizations at the headquarters level and among human rights actors, it is insufficiently mainstreamed across operational contexts. Such mainstreaming could be, for example, ensuring accessibility for persons with disabilities in humanitarian services and providing data disaggregated by disability in annual system-wide reports, which are the main source of information for donors and the wider public. While reference is made to physical rehabilitation and projects focusing on, for example, the provision of assistive devices, other important themes largely remain absent from these reports, including results on the extent to which persons with disabilities are able to access humanitarian protection and assistance and of disability inclusion more widely.

The following section discusses some of the main challenges that donors face related to funding and advocacy for inclusion of persons with disabilities in humanitarian action.

Challenges in advancing disability-inclusive humanitarian action

Finland's consistent and long-term commitments to specific issues in its international policy influencing, such as rights of persons with disabilities, is well recognized according to Finland's partners.³⁵ This article has already discussed the primary tools that the MFA uses to support and promote disability-inclusive humanitarian action: funding and advocacy. The effectiveness of these measures remains an important question that donors and other stakeholders must consider. Are resources, especially funding, being used to ensure that persons with disabilities can access humanitarian services? Are donor advocacy messages on disability-inclusive humanitarian action relevant and effective? Are grant-awarding criteria tailored to ensure results and positive impact? What are the most effective means of ensuring that impact?

Donors’ commitments to flexible funding – and the ensuing trade-offs

In terms of resourcing disability-inclusive humanitarian action, it is important to examine the use of flexible versus earmarked funding. Flexible and unearmarked funding is one of the core commitments in the Grand Bargain. The Grand Bargain was launched at the World Humanitarian Summit in 2016 and is an agreement between donors and humanitarian organizations to improve the effectiveness and efficiency of humanitarian action.³⁶ Flexible funding is vital for enabling operational organizations to prioritize allocation of funds based on humanitarian needs and react swiftly to emergencies and crises. Like other donors, Finland has made Grand Bargain commitments to progressively reduce earmarking of humanitarian contributions. While flexible funding can be both unearmarked (also referred to as core) funding, and loosely earmarked funding, Finland aims to provide specifically unearmarked funding.³⁷ In 2021, unearmarked funding comprised 46% of Finland's humanitarian funding.

Despite the Grand Bargain and its related commitments, earmarked funding still plays a role in the humanitarian space. In particular, earmarked funding is one of the tools used by donors to ensure overlooked priorities gain attention. Donors must often weigh the implications of flexible versus earmarked funding for thematic and often underfunded priorities such as disability inclusion, gender equality, child protection and psychosocial support. As opposed to flexible funding, earmarked funding is typically used to ensure humanitarian assistance for specific sectoral or thematic priorities and geopolitical contexts. However, the practice has been found to be detrimental to the ability of humanitarian organizations to respond to urgent needs.³⁸ Changing and competing donor priorities have also affected the ability of humanitarian organizations to operate according to their own strategic goals. Organizations can even face difficulties in understanding and fulfilling the multiple, diverse requirements of different donors.

Another trade-off when considering earmarked funding is long-term sustainability and ownership of disability inclusion in the organization receiving funding.³⁹ In other words, once the earmarked funding ends, there is a risk that progress on disability inclusion will end, unless new or flexible funding is allocated. Earmarked funding may be necessary for now, as humanitarian organizations are not yet sufficiently resourcing disability inclusion. At the same time, organizations receiving significant amounts of earmarked funding for a variety of priorities are less able to adapt operations to the changing contexts and humanitarian needs locally and internationally.⁴⁰

Finally, earmarked funding often faces distinct reporting requirements. Earmarking is typically accompanied by reporting on the use of the earmarked funds, whereas flexible funding may not cover thematic priorities of interest to donors. For donors, earmarking is one way to ensure implementation of protection priorities as well as accountability on the use of public funds to both political decision-makers and taxpayers.⁴¹ Avoiding earmarking of funds would entail humanitarian organizations’ integrating disability inclusion into their regular programming and operations, covering costs from their core budget and, importantly, reporting results accordingly.

Moving forward, organizations must apply disability-inclusive budgeting whether from flexible or earmarked funding. While integrating disability-inclusive design into organizational processes and planning does not necessarily require funds, often mainstreaming necessitates actions that do require funding to ensure good-quality implementation. These may be, for example, piloting of new processes such as disability-disaggregated data collection, training on disability and on the rights of persons with disabilities, and participatory activities to engage persons with disabilities and their representative organizations. Also, funds are needed for some accessibility measures such as communication using sign language interpreters and easy-read materials, as well as transportation and personal assistants for persons with disabilities to be able to participate in activities.

Transparent reporting on disability-inclusive humanitarian action as necessary for accountability

For government donors to be held accountable and report to political decision-makers and taxpayers on the use of public funds, mechanisms for reporting and tracking the use of funds are important. Expenditure on disability inclusion does not necessarily translate directly into concrete demonstrable results for persons with disabilities, but lack of tracking the use of funds makes it difficult for donors and humanitarian organizations alike to monitor resources and budget for disability-inclusive humanitarian assistance. Unless disability inclusion is resourced with earmarked funding, donors face difficulties in obtaining reports on implementation of and results from disability inclusion. The use of flexible funding for disability inclusion has not been assessed or researched widely, but one report on monitoring and tracking disability inclusion in multilateral international organizations states that information on expenditure on disability inclusion is mostly lacking.⁴²

A report from the Organisation for Economic Co-operation and Development (OECD) highlights the importance of transparent reporting and discussion of results to ensure more meaningful dialogue with partners.⁴³ Annual reports from multilateral humanitarian organizations are generally based on their overall strategy and annual plans, and cover a vast range of activities, but often do not adequately include results on persons with disabilities accessing humanitarian protection and assistance. Mainstreaming disability inclusion across all programmes can have the largest impact in reaching persons with disabilities. International humanitarian organizations already implement many programmes and operations that benefit persons with disabilities. These are often disability-specific programmes such as physical rehabilitation and provision of assistive devices. Mainstreaming throughout humanitarian protection and assistance appears to be less prevalent. Targeted programmes and actions are certainly vital to persons with disabilities in humanitarian contexts. However, the needs of persons with disabilities are just as varied as those of everyone else; therefore, ensuring access to all humanitarian protection and assistance is important.

Some qualitative information on the implementation of mainstreaming disability inclusion is available primarily from narrative reports, but quantitative data are largely lacking. For UN entities, the UNDIS outlines concrete measures for organizations to take to ensure that they are inclusive to persons with disabilities. The strategy includes an accountability framework with indicators against which UN entities are required to report. The indicators on strategic planning, for example, require disability-disaggregated data. Organizations that have progressed further than the basic level are then expected to implement systems for tracking resource allocation for disability inclusion. With an increasing number of multilateral organizations adopting their own disability-specific strategies and action plans, and UN entities implementing the UNDIS requirements, reporting against various relevant indicators is likely to increase in coming years.

Reliable disability data as largely lacking from reporting

All organizations, including donors, face major challenges in collecting reliable disability data. This is primarily due to gaps in global disability data, disability data collection, and tracking of expenditure and actions on disability inclusion. Disability-disaggregated data is an area where donor requirements, such as the MFA's, and efforts by organizations have increased. This increase includes a growing use of questions and methodology developed by the Washington Group on Disability Statistics,⁴⁴ which is a UN Statistical Commission City Group focusing on disability data. The Washington Group developed internationally validated questionnaires for reliable and cross-nationally comparable disability data in large-scale surveys, such as censuses. Disability-disaggregated data on persons accessing humanitarian protection and assistance can help identify the specific needs of persons with disabilities through inclusive and accessible baseline assessments, feedback and accountability mechanisms, and monitoring progress toward implementing inclusive and accessible services.

Disability-disaggregated data can provide information on the extent to which persons with disabilities are accessing humanitarian protection and assistance. Still, assessing the impacts of disability-inclusive actions is not enough.⁴⁵ To track implementation of disability-inclusive approaches and demonstrate results, organizations would need to have, for example, a reporting system with mandatory indicators for country-level implementation. Indicators would generate comparable data across the organization and could be used to track annual progress. Internal reporting processes should consistently require and include information on disability inclusion and persons with disabilities. Importantly, reporting requirements must also be extended to implementing partners of humanitarian organizations. Tools for tracking disability-inclusive programming and operations and for collecting disability data already exist. The OECD's Development Assistance Committee (DAC) disability policy marker⁴⁶ for tracking programmes and interventions aimed at inclusion and empowerment of persons with disabilities is one possible tool, for example, that some government donors, including the MFA, and multilateral organizations are already currently using.

Both donors and humanitarian organizations must recognize the importance of allocating adequate time and resources necessary for good-quality disability-inclusive programming and operations as well as data collection and reporting. Although the aforementioned tools for tracking and data collection are gradually being used by multilateral organizations, information from disability data is not yet available in reports. Developing, testing and implementing a marker requires significant time and resources, including setting up systems, guidance, criteria for each marker level, and training. Testing of disability data collection in humanitarian contexts has shown that training on disability and rights of persons with disabilities are key for reliable data.⁴⁷ Particularly training enumerators and staff can improve the validity and reliability of data. Studies show that a poor understanding of disability results in underestimations of the prevalence of disability.⁴⁸ Inappropriate approaches to disability, such as the medical approach, which focuses on curing the person's impairment as a way for the individual to be part of society, and the charity approach, which views the individual as a passive aid recipient, perpetuate harmful stereotypes and perceptions of persons with disabilities. Not only do the charity and medical approaches to disability overlook the agency of persons with disabilities, but they can also undermine the rights and inclusion of persons with disabilities and even cause harm. Resourcing should include disability-inclusion experts and participation of OPDs to support good-quality and CRPD-compliant, disability-inclusive mainstreaming and programming.

Conclusions

This article has highlighted the significance of investing in transparent expenditure tracking and reporting on results for a meaningful exchange between humanitarian organizations and donors. For continued commitment to flexible funding, humanitarian organizations must be able to report on results of disability-inclusive humanitarian action. Also, donor messages and priorities should be coherent. There exist challenges in balancing reporting on the largest possible quantity of persons in affected populations reached by humanitarian actors with the quality of humanitarian assistance, in other words the extent that persons, who are often in the most vulnerable situations in a crisis, can access humanitarian assistance. Donors often place demands on value for money and cost-effectiveness of reaching the largest number of affected people possible. Resources, such as those described in this article, are essential for reaching those people who cannot readily access humanitarian assistance, such as persons with disabilities. Of course, in acute crises it is vital to reach as many as possible quickly. However, an increasing number of humanitarian crises are prolonged, thus providing opportunities for better and more inclusive planning and implementation. Cost-effectiveness and timeliness of humanitarian assistance for persons with disabilities are likely to improve when disability-inclusive measures are integrated into organizational processes.

In addition, donors should coordinate messaging and avoid competing priorities. At the same time, too few donors are currently prioritizing inclusion of persons with disabilities in humanitarian action or providing funding towards disability-inclusive humanitarian action. Donor coordination and a broader donor base would create synergies in terms of joint and deeper understanding, and stronger advocacy and policy influencing. For a more effective impact, both donors and humanitarian organizations would benefit from enhanced coordination between donors and joint dialogue with their humanitarian partners. Platforms for dialogue on disability inclusion already exist, for example the aforementioned Group of Friends and the Global Action on Disability Network.⁴⁹

Disability inclusion in humanitarian action is evolving. All stakeholders, including governments, would benefit from sharing good practices and key challenges with each other. Governments and donors can learn from the progress made in other organizations. Government donors, which themselves are large organizations, face the comparable challenges of ensuring that disability inclusion is recognized and mainstreamed across organizational structures and processes, funding instruments and sectors. Similarly to humanitarian organizations, governments should have key elements and technical capacity in place at headquarters, such as strategies and expertise on the rights and inclusion of persons with disabilities, as well as adequate staff in embassies to follow up and maintain dialogue with humanitarian organizations. This would allow for better follow-up on the implementation of disability inclusion and more effective engagement in technical and organization-specific discussions in annual consultations. This would require time, resources and accumulation of knowledge, which can be challenging with a diplomatic rotation system, typical in most foreign ministries. Also, setting up markers and collecting and reporting disability-disaggregated data are challenging for government donors, but a necessary requirement for tracking implementation of policy priorities.

A few key questions deserve further investigation by donors and humanitarian organizations alike. Firstly, although humanitarian organizations may have disability-specific strategies in place for advancing inclusion of persons with disabilities and they may have dedicated high-level experts to discuss and share information on progress, information is not yet available – or perhaps not yet known – on what the actual impact is for affected persons with disabilities in contexts of humanitarian crises. Also, as progress is made in the development and implementation of disability-inclusive humanitarian action, it is as yet not clear to what extent these actions are compliant with the CRPD. Lastly, major gaps remain in facilitating collaboration in the humanitarian sector with OPDs. Funding for capacity building of OPDs on humanitarian action, as well as coordination among national OPDs for easier and more effective collaboration with humanitarian actors, is limited. Dialogue between donors, humanitarian organizations and OPDs on issues raised in this article could help progress disability-inclusive humanitarian action even further.