Towards greater inclusion in disaster risk reduction in Nepal: Realizing all-of-society commitment through meaningful participation of persons with disabilities

This article is written by Ms Nino Gvetadze, Country Director of the Arbeiter-Samariter-Bund Deutschland e.V. (ASB) in Nepal.

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About the Paper:

The disability-inclusive disaster risk reduction (DiDRR) thematic paper was prepared based on the comprehensive desk review and series of consultations with various DRR stakeholders including sectoral ministries, DPNET-Nepal, AIN-TGDM, thematic Disabled People’s Organizations (DPOs), UN agencies and other civil society actors prior to and during the National Human Rights Summit of Persons with Disabilities 2016. The process was coordinated by the Arbeiter-Samariter-Bund (ASB) Nepal.

The paper outlines the critical aspects of DRR requiring particular attention and actions for realizing the Sendai Framework all-of-society commitment through the meaningful participation of women, men, girls and boys with disabilities in disaster risk reduction at all levels. At the same time, it focuses on implementation of Article 11 of UNCRPD and the Incheon Strategy, Goal 7, for ensuring protection and safety of persons with disabilities in situations of risk and inclusion of most at-risk groups in disaster risk reduction and management.

The DiDRR paper also illustrates the shortcomings to scaling up disability-inclusive DRR in Nepal, including the lack of disability disaggregated data as an evidence base for better understanding disaster risk and inform risk-sensitive decision making. For conclusion, capitalizing on the importance of exchange of evidence-based knowledge and good practices, the paper puts forward recommendations and suggests how disability inclusion, if approached from a functioning perspective, can be practically mainstreamed into the current DRR planning and programming.

Introduction

Disasters may strike everyone, however, persons with disabilities are exposed to greater risk and are disproportionately affected by disasters due to the wide range of barriers they face in accessing and acting on information. For instance, for persons with disabilities, gaps in accessibility can pose a significant challenge in obtaining information about the risks and in evacuating in the event of a disaster. Persons with disabilities are also more likely to receive inadequate attention and coverage in post-disaster context.

The monitoring the rights of persons with disabilities in Nepal has revealed that access to information and communication in disasters and emergency situations is often overlooked. In absence of appropriate communication mechanisms, including inclusive and accessible early warning systems, persons with disabilities are placed at higher risk and their right to protection in the situation of emergency and disaster is infringed.

Globally, over 1 billion people or 15 percent of the world’s population live with some form of disability. The likelihood of disability also increases with age.

According to the World Health Survey (WHS) 2002-2004, disability prevalence for Nepal was 21.7 percent, whereas as per the National Population Census, only 0.46 percent of the total population had disability in 2001 and 1.94 percent in 2011. Although there is data consistency among the last two censuses, the census focused exclusively on a narrow choice of impairments instead of recording functional limitations and participation restriction in addition to impairments. It’s notable that surveys among the same population using an approach that emphasizes functional ability yield estimates in the 10 to 20 percent range. The way of formulating and asking questions to the household head instead of interviewing each household member, as well as stereotypes and stigma associated with disability may also have contributed to the significantly lower response rates in Nepal, compared to the WHO and national thematic Disabled People’s Organizations (DPOs) estimates.

For every person killed in a disaster, another three are injured or left with a long-lasting impairment. Haiti’s earthquake serves as a haunting reminder, where an estimated 200,000 people acquired new forms of impairment out of the 3 million who were affected. The evidence gathered after the 2011 Great East Japan Earthquake indicates that mortality rates of persons with disabilities were two to four times higher than those without disabilities.

The April and May 2015 large-scale earthquakes in Nepal occurred in the context of deeply entrenched social hierarchy and social exclusion – with vulnerable and marginalized groups having suffered a history of discrimination due to caste, gender, ethnicity, religion, age, disability, language and/or geographical remoteness. This context of social exclusion had profound significance for the earthquake response, because the overwhelming majority of the affected population were from vulnerable and marginalized groups. Although there is a limited data and research on the impacts of the Nepal earthquake on persons with disabilities, the Post-Disaster Needs Assessment (PDNA) clearly articulated the disproportionate impact of the disaster on vulnerable and marginalized groups including persons with disabilities.

The often life-threatening impact of disasters on persons with disabilities is attributed, in part, to the absence of disability perspectives in all phases of DRR. An online survey conducted by UNISDR in 2013, involving more than 5,000 persons with disabilities from 137 countries, revealed that 86 percent of the respondents had not participated in the DRR processes within their communities and were, therefore, excluded from the DRR related decision-making, planning and implementation processes. Moreover, 72 percent of the respondents stated that they did not have a disaster preparedness plan and only 20 percent stated they would be able to evacuate immediately and without difficulty in case of a disaster.

Persons with disabilities have unique contributions, often overlooked, to help reduce the risk of disasters and build resilient societies and communities. Therefore, inclusion needs to be addressed as a cross-cutting issue of shared concern and responsibility within disaster risk reduction and resilience building.

Global and regional policy frameworks supporting disability-inclusive DRR

The Sendai Framework for Disaster Risk Reduction 2015-2030 recognizes persons with disabilities as one of the major stakeholders and encourages Member States to engage persons with disabilities and their representative organizations in assessment of disaster risk and in designing and implementing DRR programs.

The guiding principle (III.19.d) recognizes that persons with disabilities are disproportionately affected by disasters. It promotes all-of-society engagement and partnership which requires empowerment and inclusive, accessible and non-discriminatory participation of those disproportionately affected by disasters.

The guiding principle (III.19.g) states that: Disaster risk reduction requires inclusive risk-informed decision-making based on the open exchange and dissemination of disaggregated data, including by sex, age and disability . The establishment of an evidence base to inform risk-sensitive decision-making is a necessary precondition for understanding disaster risk. Such an evidence base requires disaggregated data.

Sendai Framework Priority 4 also recommends: Empowering persons with disabilities to publicly lead and promote equitable and universally accessible response, recovery, rehabilitation and reconstruction approaches .

The interconnectivity of disability and DRR is well-reflected in the Sustainable Development Goals (SDGs) where the Goals 9, 11 and 13 are closely linked to the disability-inclusive disaster risk reduction. Furthermore, the SDGs confirm the United Nations’ commitment to promoting inclusive societies that take active measures to ensure the safety of everyone when disasters strike.

The Article 11 of the UN Convention on the Rights of Persons with Disabilities (CRPD) makes a strong reference to the disability-inclusive disaster risk reduction, stating that: State Parties shall take all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including humanitarian emergencies and the occurrence of natural disasters , along with an emphasis on the accessible information and “Universal Design”, being critical for the safety and resilience of not only persons with disabilities, but society as a whole.

Goal 7 of the Incheon Strategy to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific also addresses disability-inclusive DRR encouraging governments to develop disability-inclusive DRR plans, provide relevant training, ensure accessible facilities and information, and collect, analyze and disseminate disability-disaggregated data. Central to the Incheon Strategy is the establishment of reliable and comparable disability baseline data for the core indicators by the midpoint of the Asian and Pacific Decade of Persons with Disabilities (2013-2022), for tracking progress towards the achievement of the goals and targets.

The outcomes of the 7^th Asian Ministerial Conference on Disaster Risk Reduction (AMCDRR) reflect well disability-inclusion. Specifically, the Asia Regional Plan 2015-2030 highlights the role of persons with disabilities as contributing actors to disaster risk reduction and building resilient societies, mentioning disability in six places, with the following mention in the text being particularly important: Adopting an inclusive approach – via multi-sector/stakeholder DRR platforms, both at national and local levels – is particularly important. It should embrace the leadership of persons with disability, women, children and youth and the significant contribution of the business sector .

The New Delhi Declaration 2016 also calls on all government and stakeholders to:

Encourage meaningful participation and support representation of women, children and youth, and persons with disabilities in leadership role for disaster risk reduction .

As Nepal is moving towards the implementation of the Sendai Framework as well as the CRPD, the SDGs and other related global and regional policy frameworks, embracing leadership of persons with disabilities and their representative organizations will be fundamental for ensuring inclusive and all-of-society approach to DRR for building resilient communities, society and the nation.

Progress in implementing disability-inclusive DRR

In terms of disability-inclusive DRR, notable achievements have been made by a number of countries, supported by organizations and individuals working on disability inclusion and DRR. The examples below demonstrate selected good practices at local, national and regional levels, though the list is not exhaustive.

Nepal has revised its local disaster risk management planning guidelines, emphasizing the role of persons with disabilities and their representative organizations in the development of the DRR plans as well as importance of collecting and using disability disaggregated data for better understanding disaster risk and informed risk-sensitive decision-making.

The Post-Disaster Recovery Framework (PDRF) which establishes the strategic priorities for Nepal’s post-earthquake recovery over the upcoming five years, also recognizes disability issues and reflects a policy-level commitment to inclusion. However, careful attention to disability issues during its actual implementation is crucial to realize the overarching goal of ‘building back better’.

The practice of inclusion of persons with disabilities in DRR decision-making in Bangladesh has fostered the provision of accessible shelters, raised awareness in communities and led to the training of volunteers who are able to help during evacuation processes and the stockpiling of equipment needed in times of disasters. The government has also issued a circular to include persons with disabilities in disaster management committees at all levels and a special task force has been formed for implementing inclusive-DRR. Flash flood resilient house models with accessibility features are also being designed for further replication across the country.

Local initiatives on inclusive DRR plans, inclusive disaster exercises/drills, and school and community-based DRR programs have been widely promoted in Indonesia. Persons with disabilities have also been included in the local pool of facilitators for disaster management. In the Philippines, the government has allocated financial resources to support disability-inclusive DRR at the local level.

In Vietnam, information barriers for persons with disabilities in DRR have been minimized through the use of accessible digital information systems. The country is also developing a comprehensive model of the disability-inclusive community based DRR from national to village levels. The circular of guidance for the post-disaster needs assessments clearly states the importance of collection of data disaggregated by disability.

In terms of collecting and using disability data for DRR, functioning approach has gained ground as a practical and resource efficient tool. Alongside increasing uptake by national statistical agencies,the Washington Group Short Set of Questions on functioning has recently been used by DRR practitioners and development researchers in Tanzania, India and Indonesia to better identify and respond to the risks persons with disabilities face. ^&   Furthermore, the Washington Group questions can be used by a range of actors, including at the community level, with minimum training and sensitization and can be readily applied across a range of risk reduction and prevention scenarios efficiently and economically.

The Washington Group questions are increasingly being demonstrated to be a practical way to better understand the barriers and risks that persons with disabilities face. Through such understandings, we are better able to understand disaster risk and realize the inclusive and resilient societies envisaged within the Sendai Framework for DRR.

Gaps and challenges in scaling up disability-inclusive DRR in Nepal

While the Sendai Framework establishes broader recognition of the disproportionate risk that persons with disabilities face and acknowledges the important role of persons with disabilities and their representative organizations in disaster risk reduction, the progress made so far in transforming the Sendai commitments into action towards inclusive and all-of-society approach to DRR still needs to be accelerated, particularly when it relates to fulfilling commitments to disability disaggregated data. The predominant challenge remains in translating the policy into practice and removing barriers to reduce the impact of disasters on persons with disabilities.

This is partially due to the fact that both governments and other stakeholders often lack skills, knowledge and collaborative good practices of implementing disability-inclusive disaster risk reduction (DiDRR). In addition, DiDRR is often mistakenly perceived as something rather technical and therefore, overly complex and resource intensive.

When it comes to the context of Nepal, the existing systems at the local, sub-national and national levels are yet to recognize the leadership role of persons with disabilities and their representative organizations in DRR rather than viewing them as passive recipients of aid.

Research indicates that DRR activities in Nepal prior to the 2015 earthquakes failed to meaningfully include vulnerable sections of society and reflected systematic social and spatial biases. The majority of persons with disabilities were not included, engaged, or consulted in DRR activities and information and programs on disaster risk reduction and disaster preparedness were not accessible to persons with disability, further limiting their awareness about disasters.

Further, disability is often overlooked as part of the broader definition of ‘vulnerable’ groups. Forinstance, while the Gender Equality and Social Inclusion (GESI) concept is mainstreamed in the National Strategy for Disaster Risk Management (NSDRM), there is no specific mention of the role of persons with disabilities and their representative organizations in DRR planning and programming and the critical importance of collecting and using data disaggregated by sex, age and disability. Without fulfilling the Sendai Framework commitments to disability-disaggregated data, disaster risk cannot be understood, and the realization of the inclusive and all-of-society approach to DRR will be severely curtailed.

The official disability statistics in Nepal is significantly below the global averages, creating a highly contested information gap. Lack of financial and technical capacity, geographic limitations to data collection, and a variety of social stigmas lead to underreporting.

Due to the limitations in collecting and using disability disaggregated data, if the WHO global estimates were to be applied to Nepal, approximately 3 million persons with disabilities including women and men, children and youth, and senior citizens would continue to remain at-risk, being invisible to the mainstream DRR actors. Often community risk assessments also rely on the secondary data available at the local level which does not always allow to identify the most at-risk and hidden groups of the population.

It is understood that a major obstacle to collecting disability data is the perception that disability is a ‘technical’ concern. This thinking suggests that data collection is complex and resource intensive. This is not the case and is supported by a growing evidence base informed by research and practice.

The use of ‘types’ of disability as the basis for data collection is challenging for DRR actors and, more broadly, governments alike. Such an approach can give rise to multiple categorizations and a lack of consistency across, and within, countries. An alternative is to approach disability from the perspective of functioning which is less concerned with categorizations and instead focuses on what a person is able to do in their everyday life.

Understanding disability from a functioning perspective is directly relevant to DRR since it enables the disproportionate risk that persons with disabilities face to be easily identified and directly acted upon.

The case of the Nepal earthquakes also demonstrated that due to the limited representation of most at-risk groups in the local governance structures and disaster relief committees as well as in emergency response planning by state and non-state actors, the humanitarian response failed to ensure that no one was left behind. Persons with disabilities and their representative organizations were highly underrepresented within the institutional structure of disaster response and not meaningfully engaged in District Disaster Recovery Committees and cluster system (e.g. Protection cluster). Information barriers are a significant drivers of this trend, and uneven patterns of aid distribution are exacerbated by intersectional forms of social exclusion related to gender, ethnicity, caste, class and geographic marginalization.

Nepali Disabled People’s Organizations (DPOs) are a major yet underutilized DRR resource in Nepal as they are under-recognized by the Government, international development institutions, and even other GESI-oriented civil society groups. Coordination between the INGOs and DPOs was also weak with a few exceptions.

While the proposed Disaster Management bill has taken a step forward towards inclusion of most at-risk groups including women, children, senior citizens and persons with disabilities, focus remains predominantly on provision of priority assistance in emergency response and relocation from unsafe settlements. The role of persons with disabilities and their representative organizations in DRR planning and programming and importance of ensuring their inclusion and meaningful participation should be further highlighted.

Despite various policies, rules and regulations, services and facilities, the implementation of the UNCRPD including its Article 11 has not been achieved as expected. This is partially due to the fact that the disability community has traditionally prioritized realization of the rights to basic social services while the protection aspects in case of emergencies had been overlooked. Consequently, the National Policy and Plan of Action on Disability (NPPAD) has not previously addressed the aforementioned gaps including ensuring safety and protection of persons with disabilities in emergency and disaster situations. The existing urban-rural gap is also notable in this regard, particularly in terms translating policy into practice.

The proposed Disability Rights Bill also ensures the right to protection of Nepali persons with disabilities during the time of conflict, emergency situations or disasters. This piece of legislation is also crucial in terms of initiating the process of operationalizing some of the principles of inclusion embedded in the Sendai Framework for DRR.

Recommendations and ways forward

The disability and DRR stakeholders in Nepal recommend the following for consideration by the government and other relevant actors for moving ahead with the implementation of the disability-inclusive disaster risk reduction.

• Ensure all-of-society and inclusive approach to disaster risk reduction though meaningful participation of persons with disabilities and their representative organizations in all aspects of DRR, including planning, implementation, monitoring and evaluation of inclusive risk reduction, prevention, preparedness and response initiatives from local to national levels, promoting effective cross-sectoral partnerships and capacity building, providing accessible information and early warning systems, improving disability data collection using functioning approach and tools such as Washington Group questions, and incorporating the principles of Universal and Accessible Design in reconstruction and recovery.

The aforementioned recommendation could translate into the following priority actions at various levels to be carried out by the government, I/NGOs, donor community, DPOs, and other relevant actors over the short to long term period, prioritizing disability disaggregated data collection and development of disability-inclusive national and local DRR plans in order for the achievement of the first up-coming Sendai target (e) by 2020.

Recommendations to the Government of Nepal:

• Improve national and district level disability data collection in line with the SDGs by setting up effective and standardized mechanisms using a functioning approach and tools such as the Washington Group questions (e.g. within the National Population Census). Ensure data sharing between the Central Statistics Bureau, national disaster management authorities and other cross-sectoral multilateral, international and national actors.
• Ensure meaningful participation of persons with disabilities and their representative organizations in decision-making processes related to disaster risk reduction (DRR) and that all DRR-related policies, strategies, guidelines and action plans are disability-inclusive (e.g. National Disaster Risk Management Strategy, National DRR Action Plan, National Disaster Response Framework, District Disaster Preparedness Response Plans, Post-disaster Recovery Framework, DRR mainstreaming guidelines, etc.).
•  Ensure that disability-related policies, strategies and action plans (e.g. the National Policy and Plan of Action on Disability) address the Article 11 of the UNCRPD, protection and  safety of persons with disabilities in disasters and emergency situations.
•  Ensure DRR-related information, safety messages and early warning systems are provided in accessible formats for everyone including persons with various functioning limitations (e.g. hearing, visual, etc.).
• Ensure representation and meaningful participation of persons with disabilities and their representative organizations in the local governance structures and disaster relief committees, and that humanitarian response is inclusive taking into account specific needs of persons with disabilities including but not limited to health, WASH and education sectors in line with the Minimum Standards for Age and Disability Inclusion and Sphere.
• Ensure that disaster preparedness and response, recovery, rehabilitation and reconstruction are based on “build back better” principles, including addressing the root causes of risk and vulnerability for achieving equitable economic, social, health and cultural resilience of all people including persons with disabilities.
• Ensure that all newly built infrastructure including schools, hospitals and shelters are made safe and accessible following the principles of Universal Design and ‘build back better’.

Recommendations to the donor community:

• Ensure that all humanitarian and development programs supported by the donor community are inclusive and risk aware, and prioritize inclusion of most at-risk groups including persons with disabilities in disaster risk reduction planning and programming.

Recommendations to the UN:

• Provide technical support to the government and other mainstream actors for fostering cross-sectoral engagement and planning, implementation, monitoring and evaluation of disability-inclusive disaster risk reduction (DiDRR) from community to regional levels.

• Ensure meaningful participation or persons with disabilities and their representative organizations in planning, implementation, monitoring and evaluation of the UN-supported humanitarian and development programs including DRR-related policy development and practice.
• Support establishment of effective and standardized mechanisms for national and district level disability data collection using a functioning approach and tools such as the Washington Group questions. Foster cross-sectoral sharing and learning, including research on the disaggregated data and relation between disability and disaster risk (e.g. study on the impact of the Nepal earthquake on persons with disabilities).

Recommendations to the I/NGOs:

• Strengthen capacities of persons with disabilities and their representative organizations to support their meaningful contribution to all phases of DRR.
• Strengthen community resilience through ensuring meaningful participation of persons with disabilities, including women, children and youth, and senior citizens in community-based DRR initiatives.
•  Carry out inclusive community risk assessments and DRR planning at the local level, including household data collection using a functioning approach and tools such as the Washington Group short set of questions (e.g. as part of the community Vulnerability and Capacity Assessments).
• Support improving access to DRR information, communication and services for persons with disabilities (e.g. inclusive and accessible early warning systems, inclusive evacuation plans and simulation exercises/ drills, etc.).
• Support establishment of a pool of human resources on disability-inclusive DRR including facilitators and trainers with disabilities, training of first responders on disability-inclusive disaster response, etc. and promote good practices and resource materials on inclusive community-based DRR.
• Promote Universal Design and assistive technology in DRR for accessible physical infrastructure, communication and services to ensure participation and reduce risk for all.
• Promote disability-inclusive disaster preparedness for effective response and to “build back better” in recovery, rehabilitation and reconstruction.

Recommendations to the private sector:

• Ensure that all programs supported by private sector are inclusive and risk aware.

Recommendations to the media:

• Increase the role of media in DRR and safety-related information, education and awareness raising, ensuring universal and equitable access to information by everyone, including persons with disabilities.

Recommendations to the DPOs:

1. Ensure that safety and protection of persons with disabilities in disaster and emergency situations (CRPD Art.11) is addressed in the national disability-related policy advocacy, development and practice.
2. Focus on the internal human resource development on disability-inclusive disaster risk reduction for effective advocacy and partnerships as well as representation and meaningful participation in DRR-related mechanisms from local to national levels.

Recommendations to the civil society:

• Foster local leadership and forums on disability-inclusive DRR.

Supported by

1. Disability-inclusive Disaster Risk Reduction Network (DiDRRN)
2. The National Federation of the Disabled, Nepal (NFD-N) and thematic disabled people’s organizations (DPOs)
3. The Government of Nepal
4. Disaster preparedness network-Nepal (DPNet-Nepal)
5. AIN Task Group on Disaster Management and Climate Change (AIN TGDM-CC)
6. AIN Disability Working Group (AIN DWG)
7. UN Agencies
8. National Society for Earthquake Technology (NSET-Nepal)
9. Academia
10. Private sector
11. Media

About the Author: 

Ms Nino Gvetadze is a Country Director of the Arbeiter-Samariter-Bund Deutschland e.V. (ASB) in Nepal.

ASB is one of the oldest German aid and welfare organisations which established its operational presence in Nepal following the 2015 earthquake. ASB coordinates its partner implemented “Post-Earthquake Response, Recovery, Reconstruction and Inclusive Community Resilience” program in Nepal through its country office in Kathmandu. Resilience building, empowerment and inclusion of most at-risk groups including persons with disabilities in disaster risk reduction (DRR) and wider development programming are ASB’s key strategic priorities in Nepal.

The author has over ten years of progressively responsible professional experience in international/regional and country-level organisational and program management and leadership within the development and humanitarian sectors. Her technical expertise lies in capacity building at institutional, organisational and community levels through partnerships development, policy advocacy, knowledge sharing, networking and collaborations in DRR and resilience building, disability inclusive development, governance, program quality assurance and accountability.

For further details, Nino can be reached at nino.gvetadze@asbnepal.org.

Footnotes