Consequences of Exclusion: A Situation Report on Organizations of People with Disabilities (OPDs) and COVID-19 in Bangladesh, Nigeria and Zimbabwe.
The COVID-19 pandemic has exacerbated inequalities and barriers to social inclusion for people with disabilities. These experiences of social exclusion have been felt to an even greater extent by women with disabilities and under-represented groups of people with disabilities, leading to a range of effects on the operations and priorities of OPDs. To address a critical gap in the evidence base, the Disability Inclusion Helpdesk carried out a rapid assessment of the role of OPDs during the pandemic, and how the pandemic has affected OPDs’ operations and priorities.
The rapid assessment findings distill the effects of the COVID-19 pandemic on OPDs in Bangladesh, Nigeria and Zimbabwe into the following 8 points:
1. People with disabilities and OPDs were largely excluded from disaster planning and response mechanisms. At the same time, many OPDs did not receive responses to their requests to engage with government officials online as the pandemic began to unfold.
2. OPDs played a critical role responding to the repercussions of people with disabilities having been excluded from disaster planning and responses across key services. Instead of being invited to work with governments and humanitarian actors in disaster and response planning, many OPDs found themselves trying to mitigate the consequences of policy decisions that had not adequately considered people with disabilities. This had the following impacts on people with disabilities and OPD operations:
Access to information: Government information about the pandemic was not accessible to people with disabilities during the early months of the pandemic. OPDs played a key role in advocating for, producing, and disseminating accessible information. Governments in all three countries did eventually rectify this issue, but the situation could have been prevented if OPDs had been proactively included in disaster planning and planning of public information campaigns before the pandemic.
Social Protection: Many people with disabilities could not access government food and financial assistance or social protection. For example, in Zimbabwe, there was no national register of people with disabilities, which meant many people with disabilities did not receive assistance, and in Bangladesh, many people with disabilities did not have national identity cards, which precluded access to food and cash assistance. OPDs played a key role advocating for inclusion in social protection schemes, providing assistance themselves with limited resources, and/or working with governments to provide information from needs assessments and disability data to improve delivery.
Gender-based violence (GBV) response: OPDs observed an increase in incidences of GBV against women and girls with disabilities during lockdowns and as economic situations deteriorated. OPDs experienced challenges in helping survivors get the support they vitally needed. Barriers to accessing support such as physically inaccessible and/or discriminatory GBV services, travel distances, inaccessible transport, unresponsive or insensitive police and legal services, and the need to be accompanied by assistants or caregivers (who in some instances may be perpetrators), were exacerbated by restrictions on movement and OPDs’ limited funding during the pandemic. Some organisations of women with disabilities relied on community members to voluntarily monitor and follow up on cases of GBV in rural areas, while others collaborated with women’s rights organisations to ensure services were disability inclusive.
An OPD in Bangladesh highlighted the unique challenge of trying to assist women with disabilities who have experienced financial abuse during the pandemic, citing one instance of a woman with a disability dying by suicide after her savings and disability allowance were stolen by her family members.
Mental health services: The pandemic highlighted the need for improving mental health responses, both for people without disabilities and people with pre-existing mental health conditions and psychosocial disabilities (see Case Study 1 for further discussion). This is supported by IDA research during the pandemic that found that 82% of survey respondents with disabilities said they were more anxious, nervous, or worried than before the pandemic, and almost half sought support for anxiety and depression (IDA, 2020a). OPDs were a key source of information, peer support, and mental health support for people with disabilities and their families, especially those who could not access public information and services.
Education: Many OPDs had to stop their work on disability-inclusive education because schools were closed. In some cases, funds for education activities were re-allocated to pandemic response activities due to pressure from funders. OPDs continued to disseminate messages about the inclusion of children with disabilities in education and social life over radio and social media, and they communicated directly with children with disabilities and their families. But they raised concerns about children with disabilities being excluded from remote education during lockdowns, and potentially being further excluded from education in the longer term.
3. OPDs played a critical role advocating for a more disabilityinclusive response from governments. OPDs’ advocacy engagement with governments prior to the pandemic was largely focused on improving the implementation of legislation and policies to fulfil the rights of people with disabilities. In the first six to nine months of the pandemic, many OPDs temporarily shifted their advocacy focus to immediate structural issues that the pandemic brought to the fore. Governments commonly only adapted their
pandemic responses to be disability-inclusive after successful advocacy by OPDs.
4. OPDs adapted to using digital technology for outreach and information sharing, however it has been difficult to reach people with disabilities during lockdowns due to their limited access to digital technologies. People with disabilities are significantly less likely to have access to internet and digital devices than people without disabilities. As a result, OPDs could not reach large numbers of people with disabilities for months at a time during lockdowns, and in Zimbabwe, people with disabilities were not able to participate in online government consultations that were not organised to be inclusive and accessible. OPDs highlighted the urgency of addressing digital inequality, recognising that digital exclusion may lead to a deepening of poverty and inequality as the world rapidly moves online.
5. OPDs experienced dramatic reductions to funding and operational capacity. Access to sustainable funding continues to be a critical priority. During the first six to nine months of the pandemic some donors and International Non-Government Organisations (INGOs) made decisions to end funding to OPDs’ projects early, reduce project budgets, delay payments, or provide ‘no-cost’ extensions for project activities. These decisions put many OPDs under severe financial strain, with no funds to cover their operational costs, and some had to shut down temporarily. In some cases, these funding decisions were made with limited consultation with OPDs. One OPD representative also noted that during the pandemic INGOs had undertaken key work (advocacy, and data collection and collation) that OPDs could have led on if they were better resourced.
6. The pandemic has had serious financial and psychological impacts on OPD staff and volunteers. Many OPDs were unable to pay salaries during the pandemic, with staff working without salaries for months at a time and some OPDs reducing staff numbers. OPDs were also unable to pay stipends and lost volunteers. Many OPDs highlighted the dire financial and psychological impacts on their staff, and the personal dedication of staff who continued working on a voluntary basis for many months. The stress of working without pay was compounded by distressing phone calls from people with disabilities, and dramatically increased workloads for the staff who were trying to respond to extreme adversity with limited resources. Just as people with disabilities were disproportionately affected by the pandemic, members, staff and volunteers of OPDs were also impacted. For example, an organisation of people with albinism in Nigeria lost at least 10 of their members to skin cancer because during the pandemic the Government stopped providing financial support for skin cancer treatment. A man in Ecuador recounted how four of his colleagues at an OPD died from COVID-19 without access to medical assistance, and their bodies remained in their houses for many days in coffins or bathtubs with ice and fans, which had a high psychological impact on the local disability community (IDA, 2020b).
7. The impacts of the pandemic have shone a light on challenges both within and facing disability movements. OPDs’ experiences during the pandemic have highlighted the importance of effective engagement with governments; coordination and collaboration between OPDs both in contingency planning and effectively mobilising during crises to ensure no-one is left behind; and fostering meaningful parnerships with wider civil society actors including women’s rights organisations.
In all three countries, OPDs reflected on the need to strengthen their collaboration with other OPDs, continue to build more cohesive disability rights movements, and develop new ways to engage with governments through advocacy in the future. They noted the need to strengthen the operational capacity of OPDs and redefine the role of INGOs to be more focused on providing technical and financial support to OPDs to carry out operations.
OPDs also noted the vital importance of collaborating with other civil society actors and social movements. In particular, collaboration with women’s rights organisations and GBV service providers is a priority for ensuring women and girls with disabilities who are survivors of GBV can access appropriate services as the incidence of GBV continues to rise. More attention is also needed on the extent to which other development and humanitarian actors include people with disabilities and OPDs in their planning and responses.
8. The rapid assessment identified a range of factors that affected OPDs’ resilience during the pandemic:
Access to a diverse range of funding sources enabled OPDs to maintain some activities despite financial shocks. OPDs more reliant on a single source funding were more vulnerable to deep or complete funding cuts during the pandemic.
Capacity to identify and obtain new funding: OPDs with business development personnel and experience in fundraising and networking were better able to access funds at short notice. Many OPDs that had never had to identify different funding sources were severely affected financially in the first months of the pandemic.
Funders that support OPD capacity: Some funders with long-term relationships with OPDs and interest in sustaining OPDs and disability movements provided flexible and strategic funding that met organisational needs during the pandemic. This enabled OPDs to continue with their regular work within local restrictions. In contrast, many funders requested OPDs to change the direction of their work during the pandemic or made funding decisions that had severe financial impacts on OPDs.
Recognition from and engagement with governments prior to the pandemic: OPDs that had pre-existing cooperative relationships with government ministries were more likely to have reciprocal and constructive engagements during the pandemic. Whereas OPDs with little or no previous interaction and those representing particularly excluded groups were less likely to receive responses from government officials in the first six months of the pandemic.
OPDs relying on large networks of volunteers and self-help groups at community level and face-to-face awareness raising were particularly disrupted: Many had to stop all activities for long periods of time due to restrictions on movement, lack of internet connectivity and access, and limited numbers of paid staff to support members in remote areas.
Conclusions and further considerations
The OPDs that were interviewed for this rapid assessment were both pessimistic and optimistic about the future as the pandemic continues. The long-term consequences of the pandemic are not yet clear for OPDs, and will depend on the extent to which OPDs are resourced and included in ongoing responses. On the one hand, many OPDs expressed concerns about their ability to continue operating under extreme financial constraints, while others are concerned about longer-term issues such as access to vaccines; children with disabilities – especially children with intellectual disabilities – returning to education after being disproportionately affected by school and OPD centre closures; the increased risks and reports of GBV against women and girls with disabilities; and economic empowerment of people with disabilities during economic recovery. On the other hand, many OPDs were highly motivated to continue building and strengthening disability rights movements, and to improve their relationships with governments. OPDs are driven to ensure that people with disabilities and OPDs are better included in future preparations for and responses to crises, and efforts to build back more inclusively, for example by addressing digital exclusion, and ensuring disability inclusion in post-pandemic programmes and policies related to education, health and social protection.
Priority considerations
Drawing on the findings from interviews and focus group discussions (FGDs), FCDO and the Disability Inclusion Helpdesk have distilled the following priorities for further consideration for a range of different actors to help with COVID-19 response and recovery, and to ensure lessons are learnt for future crises. Further dialogue and engagement with OPDs is recommended to identify and understand their priorities and recommendations for each actor.
Governments:
Include people with disabilities and OPDs in disaster preparedness and response task forces, and in other consultation and decision-making processes for disaster recovery.
Foster engagement with OPDs in the long term across the breadth and diversity of OPDs, including organisations of women with disabilities and under-represented groups of people with disabilities.
Partner and collaborate with OPDs to ensure COVID-19 responses are underpinned by (at least) disability, gender and age disaggregated data collection, needs assessments and inclusive registration across key services and sectors, including communications, social protection, GBV services, mental health services, and education.
Address inequality of access to digital technologies for people with disabilities to ensure a safe, inclusive and accessible online environment for all.
Work with OPDs, women’s organisations, GBV service providers and others to uphold the rights of women and girls with disabilities to a life free from violence.
Civil society and humanitarian actors:
Include people with disabilities and OPDs in disaster preparedness and response task forces, and in other consultation and decision-making processes for disaster recovery.
Coordinate between governments, OPDs and GBV service providers on disability inclusive GBV prevention and response.
Address power imbalances, and cultivate more equitable partnerships and meaningful cooperation between INGOs and OPDs that respect and promote their mandate as representatives and advocates for the rights of people with disabilities.
Donors and partners:
Provide additional flexible, core, and long-term funding for OPDs, during and after COVID-19 recovery and in response to other crises.
Consult with people with disabilities and OPDs to develop funding mechanisms that cover core operational costs, organisational capacity strengthening and staff funding as well as project-based funding.
Consult with OPDs to provide funding that meets the real requirements, priorities and situations of people with disabilities and OPDs, including women with disabilities and under-represented groups of people with disabilities.
Invest in addressing evidence gaps, including in relation to disaggregated data, to better understand issues affecting people with disabilities and OPDs, including OPDs representing women with disabilities and underrepresented groups of people with disabilities.
Utilise diplomatic influence towards the meaningful participation of people with disabilities and OPDs in national, regional, and global COVID-19 recovery.
OPDs:
Continue to foster long-term engagement with governments, ensuring people with disabilities in all of their diversity are included in government engagements, for example women with disabilities and under-represented groups of people with disabilities.
Umbrella OPDs can act as a focal point for collating and sharing lessons from the pandemic response and play a coordinating role with governments, donors, and other development and humanitarian actors.
Explore options to diversify funding sources and build core funding where possible.
Download the full Report 👇https://disabilityrightsfund.org/inclusive-future-report/
