What does the evidence say? A literature review of the evidence on including people with disabilities and older people in humanitarian response

In 2016, the Grand Bargain recognised the need to increase effectiveness in the humanitarian ecosystem through better use of evidence. Humanitarian actors are increasingly recognising that evidence from quality research should be central to decision-making at all stages of humanitarian response 1. See https://evidenceaid.org/resource/evidence-based-humanitarian-action-is-the-humanitarian-sector-serious-about-evidence-geneva-28-march/ . At the same time, there has been increasing attention on who is excluded or ‘left behind’. Numerous surveys and reports tell us how people with disabilities and older people are often overlooked, and their rights and agency not recognised 2. Holden, J. et al., Disability Inclusion Helpdesk Report No. 9, 2019 (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/833579/query-9-evidence-humanitarian-response1.pdf); HelpAge, Missing millions: how older people with disabilities are excluded from humanitarian response, 2018 (www.helpage.org/newsroom/latest-news/millions-of-older-people-with-disabilities-risk-being-excluded-from-humanitarian-assistance-new-helpage-report-reveals/); Light for the World, Aid out of reach: untold stories from people with disabilities, 2020 (www.light-for-the-world.org/aid-out-reach-untold-stories-people-disabilities). . It is now widely acknowledged that people with disability and older people are disproportionately impacted by disasters, conflict and humanitarian crises. However, while much has been done to promote rights-based inclusion in humanitarian response, the inclusion of people with disability and older people remains an under-prioritised or emerging area of work.

As part of a commitment to supporting problem-led and evidence-based innovation, Elrha’s Humanitarian Innovation Fund (HIF) commissioned a Gap Analysis on the inclusion of people with disability and older people in humanitarian response. The study aims to understand the evidence base on inclusion and contribute to more effective and inclusive response. The work has been led by the Nossal Institute for Global Health at the University of Melbourne, supported by Arbeiter-Samariter-Bund’s Office for Indonesia and the Philippines (ASB).

The first of two reports from the Gap Analysis, published in July 2020, summarises the findings from academic and grey literature reviews 3. The initial report is available at: https://www.elrha.org/researchdatabase/gap-analysis-humanitarian-inclusion-disabilities-older-people-literature-review/. . The second and final report, which will include the findings from all components of the Gap Analysis, will be published in September 2020.

Method

For the initial report, reviews of academic and grey literature drew on systematic review methods. Reviews were conducted separately for people with disability and older people to ensure that a wide body of evidence was identified. Only articles published in English between the start of January 2010 and the end of January 2020 were included. More than 23,000 articles were identified from a range of databases; 337 full-text articles were screened, and 74 were included in the final mapping.

A thematic analysis was completed to organise and map the articles. Both disability and older age articles were mapped across two sets of categories. The first set is based on the Humanitarian Inclusion Standards for Older People and People with Disabilities (HIS) 4. Age and Disability Consortium (CBM, HelpAge, Humanity & Inclusion), Humanitarian inclusion standards for older people and people with disabilities, 2018 (https://reliefweb.int/report/world/humanitarian-inclusion-standards-older-people-and-people-disabilities). . The second is based on humanitarian sectors or areas of work, including shelter, water, sanitation and hygiene (WASH) and health. This provided a practical overview of how evidence is distributed across areas of humanitarian practice and facilitated the identification of key gaps. We also hope that, by aligning to existing standards, this review will aid coordination and collaboration to address the gaps.

Summary of disability evidence mapping

Overall, disability articles were widely dispersed across the nine HIS. Most of the disability articles were from peer-reviewed journals (35 out of 46). No evidence was identified under building resilience and preparedness through humanitarian action (HIS 3) for people with disability. Very little evidence was identified on the meaningful participation of people with disability (HIS 4), inclusive mechanisms for feedback and complaints (HIS 5) by people with disability, and coordination of inclusive humanitarian assistance (HIS 6). By sector, very little evidence was identified on disability inclusion in WASH in humanitarian settings and in camp management. No evidence was identified relating to disability inclusion in food security or logistics.

Most disability articles related to access to humanitarian assistance (HIS 2), followed by organisational learning for inclusive humanitarian assistance (HIS 7). By sector, most articles related to communications and to health. Limited evidence was found on data and identification of people with disability (HIS 1), on staff and capacity (HIS 8), or on managing resources for inclusive humanitarian assistance (HIS 9).

Summary of older age evidence mapping

Fewer articles were identified on the inclusion of older people in humanitarian response compared to the inclusion of people with disability. Most articles addressing the inclusion of older people were from peer-reviewed journals, with the exception of those on access (HIS 2), which were mostly from grey literature.

As with disability, no evidence was found on building resilience and preparedness through humanitarian action (HIS 3); on the meaningful participation of older people (HIS 4); on inclusive mechanisms for feedback and complaints (HIS 5) by older people; or on organisational learning for inclusive humanitarian assistance (HIS 7). As with disability, most older age articles related to access to humanitarian assistance and accessibility (HIS 2), followed by managing resources for inclusive humanitarian assistance (HIS 9). Limited evidence was identified on data and identification of older people (HIS 1), coordination of inclusive humanitarian assistance (HIS 6), and staff and capacity (HIS 8) respectively.

Most articles addressing the inclusion of older people did not have a specific sector focus. Those that did looked most frequently at shelter, camp management, communications and health. Very little evidence was identified for food security, logistics or WASH. In comparison to the sectors identified for disability, no older age articles were identified under protection.

Key findings

This article provides a summary of overall findings. Please refer to the full report for more detailed findings, including under individual HIS categories.

The current evidence base on the inclusion of people with disability and older people in humanitarian response is highly diverse in terms of research topics, approach, quality and scope. Evidence is spread broadly and there is little depth of quality evidence for any sector under any HIS. Despite growing awareness of the importance of inclusive humanitarian response, there is limited evidence that people with disability and older people are being included. There is also limited evidence on institutional barriers to the inclusion of people with disability and older people in response, or on why known inclusion principles and approaches are not being widely adopted.

Most of the literature notes an absence of inclusive interventions and little critical analysis on the use and effectiveness of existing inclusive approaches. There is also no clear evidence on the positive impacts or outcomes for people with disability and older people resulting from inclusive humanitarian response. No evidence relating to the costing of inclusion or cost–benefit analyses on interventions was found, and there was limited evidence on the effective use of data to improve inclusion in humanitarian response.

Although a large number of articles argue for the importance of inclusion, the humanitarian sector generally has an outdated understanding of disability and tends to approach it from a medical, rather than a social or rights-based, perspective. The medical model of disability focuses on the individual and their impairment, in contrast to the social model, which emphasises the removal of barriers in society to ensure inclusion.

The disability literature notes the importance of engaging with representative organisations of people with disability (OPDs). No mention of an equivalent mechanism or approach to engaging with older people was identified. Humanitarian actors may also assume a link between social standing and older age. There is evidence of a tendency to identify, and coordinate with, ‘elders’ who may not represent older people more broadly. There is also a lack of nuanced understanding and critical analysis of the diversity of older age beyond 60.

Overall, evidence on the intersectionality between disability and older age, and other identity characteristics, was limited. A few articles addressed specific groups, such as women with disability, but there was little detailed gender analysis and almost no evidence analysing how other characteristics, such as race, ethnicity or class, may interact with disability or older age.

Finally, with the exception of Deaf researchers, there was a lack of research led by people with disability or older people themselves.

Where are the gaps?

The gaps in evidence identified in the literature reviews indicate where additional research, resources and policy could be targeted. Distinct gaps were found for individual HIS categories; further information can be found in the full report. Here we provide some highlights we feel are particularly relevant for further research and potential for innovation.

Under HIS 1, on data collection and identification, a key evidence gap was around the identification or development of data collection tools to measure barriers to participation in response. The focus to date has been on tools, such as the Washington Group Questions, to identify individuals with disability. However, these tools alone provide little information on participation or the barriers that prevent it. There was also a lack of evidence comparing people with disability with people without disability. Aside from diagnostic health tools, no tools to identify the specific needs of older people in response were identified.

The largest number of articles related to access and accessibility (HIS 2) for both disability and older age. However, these tended to be broad in nature and lacked specifics. Little evidence was found on the access and particular support needs of people with disability or older people of different ages. Further gaps included understanding the long-term sustainability of interventions initiated during response to improve access. There is also a need for more effective strategies to promote independence for people with disability and older people when established support networks and systems are disrupted or absent.

No articles were found on building preparedness and resilience through humanitarian response (HIS 3).

In terms of meaningful participation (HIS 4), an important gap is understanding the roles of, and challenges experienced by, representative organisations of people with disability and older people in facilitating participation. One of Elrha’s current challenges is looking to support innovative mechanisms for meaningful participation and innovative methods to assess its effectiveness. Leadership or partnership with an OPD or Older Person’s Association (OPA) is mandatory for this challenge. We hope this innovation challenge may contribute to filling the evidence gaps on meaningful participation and the roles of OPDs and OPAs.

HIS 5 is dedicated to inclusive mechanisms for feedback and complaints. There is a key gap around how, and in what circumstances, to apply existing and emerging technologies to improve people-centred feedback mechanisms. Similarly, more understanding is needed on how the social (human interaction) aspect of technology-based systems may affect adoption and use by people with specific information access needs.

There was very little evidence on coordination of humanitarian assistance under HIS 6. Gaps included understanding how OPDs and people with disability may most effectively contribute to coordination mechanisms to improve inclusion, and where key entry points may be. There is also limited evidence on the role and effectiveness of formal and informal coordination mechanisms in improving inclusion for older people and people with disability in response at all levels.

From the nine articles identified on organisational learning for inclusive humanitarian assistance (HIS 7), key gaps include the effectiveness of approaches to ensuring disability inclusion in response beyond voluntary commitments, for example consideration of mandatory codes of practice at international or national levels. Additionally, more evidence is needed on how to overcome institutional perceptions that inclusion is the responsibility of specialist agencies, and that barriers to inclusion are only physical.

Under HIS 8 on staff and capacity, there are gaps in understanding the effectiveness of different approaches to training and capacity-building for inclusion. Alternatives to formal training, such as mentor and resource networks, are not well-explored. There are gaps in the provision of training on the specific needs of people with diverse disabilities and older people, in addition to inclusion in general.

Lastly, on managing resources (HIS 9), key gaps include assessing the advantages of deploying multidisciplinary teams with shared responsibilities for inclusion of people with disabilities and older people across sectors. This is in contrast to individual or sector-specific focal points for inclusion. In general, there are significant gaps in understanding the costs and resourcing requirements to effectively ensure inclusion in specific sectors, and that specific needs are met.

Reflections on the evidence

While there is increasing awareness of the need for inclusion, practice continues to lag behind. This is despite the increase in publications, including guidelines, on the inclusion of older people and people with disability in humanitarian response in recent years. Further, there is a growing body of evidence on the impacts of humanitarian crises and disasters on older people and people with disability. Yet the inclusion of people with disability and older people is still not common practice in humanitarian action.

The evidence highlights a need to look beyond general approaches to improving access and consider what institutional or structural changes may be required across the humanitarian system. Examples include shifting the understanding of humanitarian actors towards social and rights-based approaches to inclusion; increasing staff skills and capacities beyond raising awareness on the importance of inclusion; and mandating, and requiring accountability for, the allocation of resources at all levels of management and coordination. Viewed across sectors, the evidence clearly points to this being an emerging area of work, and supports the need for increased investment in inclusive practice and related research.

This article provides a summary of findings: further detail is available in the full report. The second report will build on the evidence from the literature reviews and explore the extent to which humanitarian actors and other stakeholders are using available information and resources. We intend for this research to become a foundational resource to ensure that the innovation we support is problem-led and addresses gaps in evidence. We hope the wider humanitarian community will similarly benefit from these findings.

Sophie Van Eetvelt is an Innovation Manager at Elrha, where she leads the HIF focus area on the inclusion of people with disabilities and older people in humanitarian response. Dr Manjula Marella is a Senior Research Fellow at the Nossal Institute for Global Health, University of Melbourne. Manjula’s research focuses on measurement of disability and its impact, the evaluation of disability inclusive development programmes and the design of outcome measurement tools. Lana Logam is a Technical Advisor in the disability inclusion team at the Nossal Institute. Dr Alex Robinson heads the disability inclusion team.