What are the key considerations for including people with disabilities in COVID-19 hygiene promotion programmes?

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Question & problem

People with disabilities may be more likely to acquire COVID-19, and if infected may be more likely to experience serious symptoms, or die. Aside from those consequences of the pandemic related to morbidity and mortality, people with disabilities are often reliant on carers to aid with common daily tasks, and so social distancing measures may be unfeasible. Furthermore, safe water, sanitation and hygiene (WASH) services and facilities may be inaccessible to people with disabilities, and, in many settings, efforts to deliver services in a socially-distanced world have resulted in the roll out of digital or remote healthcare approaches which are sometimes not accessible or inclusive. One of the key interventions in response to the COVID-19 pandemic has been international attention, and improved funding, programming and media messaging in support of WASH. People with disabilities – who are most at risk of negative consequences of COVID-19 – most need access to such interventions. Yet, WASH access is considered to be one of the biggest challenges of daily life for many people with disabilities.

Quote

“Depriving disabled persons access to adequate, clean water and accessible sanitation leads to health complications, loss of dignity, social isolation and exclusion from participation in school or community activity.”
Enfield, 2018

Recommendations

Programme designers should conduct a rapid review of WASH-related challenges

Key recommendation

Before developing programming, conduct a rapid review of the WASH related barriers and challenges experienced by people with disabilities and their carers during COVID-19

Action

WaterAid has developed step by step guidance on how to do this. It is important, in planning programmes, to understand current handwashing behaviours and barriers to practicing these behaviours among people with disabilities. Accessibility audits of WASH facilities and resources can also be used to improve the design of inclusive infrastructure.

Disability-inclusion is a key consideration when designing COVID-19 WASH programmes

Key recommendation

Think about disability-inclusion when designing your COVID-19 response programmes and fully resource it.

Action

Budgets at the national and subnational levels need to include resourcing for staff capacity development on disability inclusion, and for all disability related programme and policy activities, including improved infrastructure for accessibility.

People with all types of disabilities must be engaged at all stages of COVID-19 programming

Key recommendation

Identify ways of engaging people with all types of disabilities at all stages of COVID-19 programmes, from planning to evaluation, including through consultation and partnership with Disabled Persons Organisations and Disability Service Providers.

Action

Working with community leaders and service providers to identify households that include a person with a disability and engaging these individuals in the programming cycle is invaluable. Local Disabled Persons Organisations and Disability Service Providers can be key partners in this process during the COVID-19 pandemic. DPOs often have limited resources and capacities, so it is vital to support their core costs, including overheads, organisational and capacity development efforts, as well as funding any joint activities. Effectively engaging people with disabilities – at every stage of programming, from needs assessment to evaluation – requires implementing organisations to actively seek to include people with different impairments, ages, genders, and their carers, and recognise that the needs of these individuals will not be homogenous.

Assistance needs to be provided to people with disabilities and carers

Key recommendation

Provide assistance to people with disabilities and carers to enable them to carry out COVID-19 protective measures and provide advice on how to keep support structures and assistive devices clean.

Action

This may include providing households with a person with a disability additional hygiene products or specific hygiene items to address their needs, such as incontinence products. Households with a person with a disability may require greater access to water than other households in order to maintain hygiene, and may be in less of a position to afford or collect this, and people with disabilities may also require housing support to achieve physical distancing. People with disabilities may also use assistive devices such as walking sticks, wheelchairs, crutches, and communication aids. These surfaces can easily become contaminated and must be cleaned often.

All WASH facilities and services need to be designed with accessibility and inclusion in mind

Key recommendation

Make all WASH facilities and services, including handwashing stations and bathing facilities, and COVID-19 communication and programme delivery processes accessible.

Action

There are several resources documenting how to make handwashing facilities more inclusive. These include the Compendium of accessible WASH technologies and the IDS compendium of handwashing technologies for low resource settings.  The Compendium of Accessible WASH Technologies includes designs for accessible bathing facilities. As well as ensuring that everyone can access WASH facilities, all hygiene behaviour change messaging must be about supporting each other, as people with disabilities may take longer to achieve desired behaviour change, or may need assistance to do so. Accessibility audits can guide the process of improving inclusion and accessibility.

Apply a gender lens to disability inclusive WASH COVID-19 responses

Key recommendation

A gender lens needs to be applied to disability inclusive WASH COVID-19 responses to ensure that the specific needs of people who menstruate or give birth are met.

Action

WASH is a gendered issue, as some people have specific WASH needs, such as maternal or menstrual health and hygiene. In families with a person with disability, women and girls within the family are more likely to be carers of that person, and so require information to support themselves and their family member. Acknowledgement of these factors is imperative if WASH is not to perpetuate inequalities, or exclude/overburden women and girls.

Train WASH practitioners and healthcare workers on disability inclusive WASH

Key recommendation

Train WASH practitioners and healthcare workers on disability inclusive WASH

Action

In order for WASH initiatives and general COVID-19 healthcare provisions to be meaningfully inclusive, implementing personnel need to be trained on disability inclusion. Measures to promote inclusion in other settings can be transferred to WASH programming, to speed up staff capacity-building in crisis situations.

Learn from and document experiences to inform disability inclusive programming and policies

Key recommendation

Learn from other epidemics and document experiences to inform disability inclusive programming and policies.

Action

It takes time for COVID-19 specific evidence to be generated and disseminated. A range of past emergencies and epidemics hold valuable lessons which can inform programming in the interim.

Challenges

Challenge #1: Hand washing with soap is one of the most important preventative behaviours in the COVID-19 public health response, and yet practicing handwashing poses challenges to many people with disabilities.

  • People with disabilities may have a greater need to hand wash more frequently (due to reliance on surfaces and others to move around), and yet may face impairment related limitations to doing so.
  • Carers may also lack adequate information on how to support hygiene for a person with disabilities during COVID-19.
  • Inaccessible handwashing infrastructure, and inaccessible information or hygiene promotion programmes pose barriers to people with disabilities in conducting proper handwashing in line with public health guidelines.
  • Information relevant to carers may be absent.

Challenge #2: COVID-19 communication and programme delivery processes may not reach people with disabilities and may be inaccessible.

  • It is vital that public health messaging does not inadvertently increase disability stigma and marginalisation.
  • Sometimes hygiene approaches like handwashing with soap and water can focus on behaviour change by individuals, and where people cannot change their behaviours, this can lead to blame and anger, which can be heightened during an outbreak.

Challenge #3: People with disabilities face a diverse range of barriers to accessing WASH programmes.

  • These include physical barriers and characteristics of the local environment which make it hard for people with disabilities to reach WASH facilities, including uneven terrain or muddy ground, as well as barriers steps or inappropriate pump handles which prohibit use by people with certain impairments.
  • Policies and institutions within the WASH sector may overlook the needs of people with disabilities, and their carers or prevent their participation by designing and delivering non-inclusive WASH programmes.

Challenge #4: The barriers that people with disabilities face when accessing WASH facilities and services are often more pronounced in crises.

  • Given the disruptions and changes that crises such as the COVID-19 pandemic cause to the physical and social environment, people with disabilities are more likely to be marginalised by WASH programmes during emergencies.

Challenge #5: People with disabilities are seldom consulted on the development of hygiene policies, implementation plans and strategies, and so disability inclusion measures are not built into these documents.

  • The policy-making and planning processes for a wide variety of public health responses do not involve the consultation of service users or their carers, and so plans and strategies to roll out initiatives like WASH may not be designed with provision for people with disabilities.

Finding the answers

The search strategy was designed to identify peer reviewed and grey literature that covered COVID-19, disability and WASH. The review covered all countries and was not limited to date. Two online databases were used: PubMed and Global Health through Ovid SP, and grey literature was sourced using Google Scholar and Twitter. Search terms encapsulated three main concepts: COVID-19, disability, and water, sanitation and hygiene. Eligible papers were: published in a peer reviewed journal, government reports, technical briefs and guidance, blogs, news articles and opinion pieces. Fifty articles were included in this review and data was reviewed thematically.

Recommendations & actions

Programme designers should conduct a rapid review of WASH-related challenges

Key recommendation

Before developing programming, conduct a rapid review of the WASH related barriers and challenges experienced by people with disabilities and their carers during COVID-19

Action

WaterAid has developed step by step guidance on how to do this. It is important, in planning programmes, to understand current handwashing behaviours and barriers to practicing these behaviours among people with disabilities. Accessibility audits of WASH facilities and resources can also be used to improve the design of inclusive infrastructure.

Disability-inclusion is a key consideration when designing COVID-19 WASH programmes

Key recommendation

Think about disability-inclusion when designing your COVID-19 response programmes and fully resource it.

Action

Budgets at the national and subnational levels need to include resourcing for staff capacity development on disability inclusion, and for all disability related programme and policy activities, including improved infrastructure for accessibility.

People with all types of disabilities must be engaged at all stages of COVID-19 programming

Key recommendation

Identify ways of engaging people with all types of disabilities at all stages of COVID-19 programmes, from planning to evaluation, including through consultation and partnership with Disabled Persons Organisations and Disability Service Providers.

Action

Working with community leaders and service providers to identify households that include a person with a disability and engaging these individuals in the programming cycle is invaluable. Local Disabled Persons Organisations and Disability Service Providers can be key partners in this process during the COVID-19 pandemic. DPOs often have limited resources and capacities, so it is vital to support their core costs, including overheads, organisational and capacity development efforts, as well as funding any joint activities. Effectively engaging people with disabilities – at every stage of programming, from needs assessment to evaluation – requires implementing organisations to actively seek to include people with different impairments, ages, genders, and their carers, and recognise that the needs of these individuals will not be homogenous.

Assistance needs to be provided to people with disabilities and carers

Key recommendation

Provide assistance to people with disabilities and carers to enable them to carry out COVID-19 protective measures and provide advice on how to keep support structures and assistive devices clean.

Action

This may include providing households with a person with a disability additional hygiene products or specific hygiene items to address their needs, such as incontinence products. Households with a person with a disability may require greater access to water than other households in order to maintain hygiene, and may be in less of a position to afford or collect this, and people with disabilities may also require housing support to achieve physical distancing. People with disabilities may also use assistive devices such as walking sticks, wheelchairs, crutches, and communication aids. These surfaces can easily become contaminated and must be cleaned often.

All WASH facilities and services need to be designed with accessibility and inclusion in mind

Key recommendation

Make all WASH facilities and services, including handwashing stations and bathing facilities, and COVID-19 communication and programme delivery processes accessible.

Action

There are several resources documenting how to make handwashing facilities more inclusive. These include the Compendium of accessible WASH technologies and the IDS compendium of handwashing technologies for low resource settings.  The Compendium of Accessible WASH Technologies includes designs for accessible bathing facilities. As well as ensuring that everyone can access WASH facilities, all hygiene behaviour change messaging must be about supporting each other, as people with disabilities may take longer to achieve desired behaviour change, or may need assistance to do so. Accessibility audits can guide the process of improving inclusion and accessibility.

Apply a gender lens to disability inclusive WASH COVID-19 responses

Key recommendation

A gender lens needs to be applied to disability inclusive WASH COVID-19 responses to ensure that the specific needs of people who menstruate or give birth are met.

Action

WASH is a gendered issue, as some people have specific WASH needs, such as maternal or menstrual health and hygiene. In families with a person with disability, women and girls within the family are more likely to be carers of that person, and so require information to support themselves and their family member. Acknowledgement of these factors is imperative if WASH is not to perpetuate inequalities, or exclude/overburden women and girls.

Train WASH practitioners and healthcare workers on disability inclusive WASH

Key recommendation

Train WASH practitioners and healthcare workers on disability inclusive WASH

Action

In order for WASH initiatives and general COVID-19 healthcare provisions to be meaningfully inclusive, implementing personnel need to be trained on disability inclusion. Measures to promote inclusion in other settings can be transferred to WASH programming, to speed up staff capacity-building in crisis situations.

Learn from and document experiences to inform disability inclusive programming and policies

Key recommendation

Learn from other epidemics and document experiences to inform disability inclusive programming and policies.

Action

It takes time for COVID-19 specific evidence to be generated and disseminated. A range of past emergencies and epidemics hold valuable lessons which can inform programming in the interim.

Policy priorities

Service users need to be included in the development of policy for WASH (and other COVID-19) programming at the national and sub-national level, and service users involved in the process need to represent a wide variety of different socio-economic groups, impairment types, and be ethnically and gender diverse. A wide variety of disability inclusion measures should be built into hygiene policies, implementation plans and strategies. Advocacy and policy plans – if already being implemented – must be revised in meaningful collaboration with people with disabilities. It is imperative to ensure that budgets include resourcing for staff capacity development on disability inclusion, and for all disability related programme and policy activities. Finally, people with disabilities and their carers must also be actively engaged in WASH policy and programme evaluation, to enable ongoing improvement of inclusion provisions.

Conclusion

People with disabilities are more at risk during the COVID-19 epidemic, and this is compounded by the fact that a key intervention for disease prevention – WASH – often remains inaccessible to people with disabilities. People with disabilities may be reliant on carers, but they are rarely supported to understand how to meet another person's WASH requirements. A number of practical modifications to intervention design and delivery can result in improved accessibility of WASH programming. Inclusion of people with disabilities and their carers in the design of interventions during the COVID-19 response is imperative if these modifications are to come to be most useful to services users, and well-implemented.

Gaps & research needs

Impact evaluations, including randomized controlled trials and other rigorous research studies are needed in order to evaluate how WASH programs can be made more inclusive of people with disabilities and their carers, more accessible to people with a range of types of impairments, and which platforms are best to ensure optimal coverage of WASH programming. Further, implementation research would contribute valuable insights regarding how programming practices and processes shape key outcomes during COVID-19 WASH responses, in relation to disability inclusion and accessibility, and wellbeing of people with disabilities.

Acknowledgements

Publication details: © Disability Evidence Portal and London School of Hygiene & Tropical Medicine, August 2019.

Suggested citation: Jane Wilbur and Xanthe Hunt. What are the key considerations for including people with disabilities in COVID-19 hygiene promotion programmes? Disability Inclusive Development Observatory, 2020.

Disclaimer: The views expressed in this publication are those of the author and should not be attributed to Disability Evidence Portal and/or its funders.

Resources: The evidence synthesis and recommendations presented here previously appeared in Wilbur, J. (2020). Considering disability in COVID-19 hygiene promotion programmes. COVID-19 Hygiene Hub. Available: https://resources.hygienehub.info/en/articles/4098103-what-do-we-know-in-general-about-disability-and-wash-access