Inclusion of persons with disabilities in Covid-19 response and recovery: seven steps to implementing the IASC Guidelines

The Covid-19 global crisis has thrown into stark relief the harmful inequalities existing in societies everywhere. No more harshly is this felt than by persons with disabilities, who face elevated risks of infection, serious illness and mortality as well worsening levels of poverty, abuse and exploitation (as detailed in a recent policy brief from the UN Secretary-General).

This is not due to an intrinsic vulnerability but to systemic barriers restricting access to basic healthcare and sanitation, combined with deeply rooted stigma and prejudice. The elevated impact of the Covid-19 crisis is vividly illustrated by the testimonies of persons with disabilities and their families, gathered from across the world by the International Disability Alliance (IDA). And a new study from Humanity & Inclusion (HI) presents evidence of the gaps in the response so far which threaten to leave persons with disabilities even further behind.

This is nothing new for persons with disabilities, who represent over 15% of the world’s crisis-affected population This figure is much higher in some conflict settings. See the following for full details: Report of the United Nations Secretary-General for the World Humanitarian Summit, One humanity, shared responsibility. and are disproportionately affected by all conflict and emergency situations:

• in disasters, the mortality rate for persons with disabilities is between two and four times higher than that of persons without disabilities; Katsunori Fujii, ‘The Great East Japan Earthquake and disabled persons’. Japan: Disability Information Resources.
• among displaced populations, children with disabilities are at a higher risk of abuse and neglect;
• women with disabilities are at higher risk of sexual violence. UNICEF (2017) Including children with disabilities in humanitarian action – general guidance.

For too long the risks faced by persons with disabilities in crisis settings have been exacerbated by their exclusion from humanitarian preparedness, response, and recovery. But there are signs of progress. No longer seen as the domain of specialist agencies, a wide range of humanitarian actors have committed to improving disability inclusion by implementing the new Inter-Agency Standing Committee (IASC) Guidelines on inclusion of persons with disabilities in humanitarian action launched in November 2019.

To reinforce this commitment during the ongoing global pandemic the IASC will soon launch a brief for applying these guidelines during the Covid-19 response. This focuses on four key elements: participation, addressing barriers, empowerment and capacity building, and data and monitoring.

Why are the IASC Guidelines a significant step forward?

Fourteen years after the first edition of the IASC Gender Handbook, and thirteen since the IASC MHPSS Guidelines, we finally have Guidelines for disability inclusion from the IASC, the highest level of humanitarian coordination. They build on existing, general frameworks and guidelines, including the Core Humanitarian Standards, Sphere Handbook, and the Humanitarian Inclusion Standards, as well as resources on more specific topics, such as children with disabilities, shelter and disability data.

These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organisations alongside traditional humanitarian stakeholders.  This represents a radical shift. Humanitarian actors, along with much of society, typically perceive persons with disabilities merely as victims, vulnerable people, or beneficiaries rather than agents of resilience and change and as such exclude them from decision-making at the community, national, and global levels.

Not only do the IASC Guidelines provide valuable practical instructions for disability inclusion; they also demonstrate what is possible if persons with disabilities are recognised as experts of their own experience and included in learning and development processes.

Global guidelines are often dismissed as too abstract or unwieldy for practical use by field staff, especially during an emergency response. In reality, they will never provide all the answers but they will help us to ask the right questions and enable us to demand the training and technical support we need to work out the solutions that apply best to each context. They also help to normalise and operationalise concepts, such as accessibility and reasonable accommodation, which previously were dismissed by mainstream actors as a luxury or requiring specialist skills.

But how do we turn these guidelines into systematic change?

On 4 March 2020, the Humanitarian Policy Group (HPG) at ODI hosted a roundtable discussion on precisely this question. The event brought together senior managers and technical advisors from mainstream and disability-specialist humanitarian organisations as well as organisations of persons living with disabilities (OPDs).  The key points detailed in the HPG learning note are summarised below, along with their implications for practice during the Covid-19 response:

1)    Accessible formats

Guidance must be provided in appropriate formats. The English version of the Guidelines is already available in a range of digital formats to ensure it is accessible for people with disabilities and other language versions will also be available in these formats. Islamic Relief Worldwide (IRW) is currently finalising the Arabic translation, due to be published very soon.

Accessibility of information is also a crucial aspect of ensuring an inclusive response to Covid-19. The International Disability Alliance and the International Disability and Development Consortium are leading a campaign calling for public health information and communications around Covid-19 to be fully accessible.

2)    Learning and evidence

Theory must be illustrated by practical examples. There is a small but expanding body of evidence from positive and challenging practices, for example, this collection of 39 case studies from 20 countries by Humanity & Inclusion (HI), CBM, and IDA. And Elrha will soon publish the results of a gap analysis to inform a new Innovation Challenge to be launched on 8th July. This will add to their existing portfolio of inclusive WASH and GBV innovation projects.

The global Reference Group on inclusion of persons with disabilities in humanitarian action, co-chaired by CBM, Unicef, and IDA is now collecting examples of inclusive responses to Covid-19. A multi-stakeholder group has also launched a major survey to collect evidence on how persons with disabilities are being affected by the crisis and the Washington Group on Disability Statistics has issued guidance on using the Washington Group data tools to assess the impact of Covid-19 on persons with disabilities.

3)    Tools

We need practical tools to enable humanitarian workers to implement the Guidelines. We can also use the Guidelines to demonstrate the need for these tools and encourage donors to mobilise resources. For example, the International Rescue Committee (IRC) have secured institutional funding to research and develop tools to implement disability-inclusive client responsiveness. IRC has also used the IASC Guidelines to develop a standard operating procedure for providing reasonable accommodations during surveys and community consultation.

4)    Training

Staff need training that tackles conscious and unconscious bias as well as guidance on the key concepts and practical measures for inclusion. Only when this training involves persons with disabilities is it transformative. This was demonstrated by the IDA-IDDC BRIDGE training initiative, which brought together OPDs and traditional humanitarian actors to collectively build knowledge, confidence and mutual understanding for effective collaboration.

5)    Coordination and partnerships

This type of training is a critical component of preparedness, which can lay the foundation for effective partnerships between OPDs, UN agencies, INGOs, local authorities and other humanitarian actors. Field-level task forces focusing on disability have emerged in recent years, for example, in Cox’s Bazar where the Age and Disability Working Group has been working towards mainstreaming inclusion at the inter-sector level. However, barriers to participation of OPDs in cluster coordination persist.

At the global level, a Reference Group on Inclusion of Persons with Disability in Humanitarian Action was established in January 2020, which will serve as a platform for fostering long-term cooperation between the UN, international agencies, NGOs and OPDs in promoting disability inclusive humanitarian response.

6)    Strategies for organisational change

A recent review conducted by Elrha and HelpAge International highlighted a number of challenges for building organisational capacity. Some agencies are pursuing an integrated approach that addresses disability inclusion within a broader framework for protection mainstreaming and accountability to affected populations. This ensures traction with colleagues already overloaded with priorities and cross-cutting issues.

For example, CAFOD has developed a Safe, Accessible, Dignified, and Inclusive (SADI) programming approach, which brings together nine elements including safeguarding. IRW’s framework has six components and emphasises intersectional analysis to inform measures that are sensitive and responsive to gender, age, and disability and conflict.

7)    Accountability

Finally, the change required to operationalise the IASC Guidelines must be driven by robust accountability mechanisms. We must be transparent and specific about our commitments to inclusion; set measureable, disaggregated targets; collect and report disaggregated data; ensure participation of persons with disabilities in monitoring and evaluation; and provide accessible mechanisms for feedback and complaints.

The effectiveness of our response to the current global crisis, and future crises, must be measured by our ability to include those people who have been consistently left behind in the past.

Tom Palmer, Protection & Inclusion Advisor, Islamic Relief Worldwide