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Summary report: Considering disability and aging in COVID-19 prevention programmes
Summary report: Considering disability and aging in COVID-19 prevention programmes
Jane Wilbur avatar
Written by Jane Wilbur
Updated over a year ago

Why should we include people with disabilities and older adults in infectious disease responses?

Fifteen percent of the global population has a disability – that’s one in seven people. People with disabilities include ‘people with long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others’. Of these:

There is therefore a significant overlap between older populations and populations with disabilities, which should be taken into account when designing and implementing inclusive disease responses. There are also distinct requirements for people with disabilities who are not older, and older adults who do not have disabilities, which must also be taken into account. Considerations for each of these overlapping groups are provided below.

Including people with disabilities and older adults is about recognising basic human rights

The UN recognises that the Human Rights to Water and Sanitation are essential to achieving all other human rights. This includes the UN Convention on the Rights of Persons with Disabilities (CRPD), which has been signed by 163 countries, and stipulates that humanitarian responses must be disability inclusive (Article 11). The UN’s Secretary General urged governments “to place people with disabilities at the center of COVID-19 response and recovery efforts and to consult and engage people with disabilities”. Though international obligations to realising the human rights of older adults are implied through a number of treaties (including the CRPD, the Convention on the Elimination of All Forms of Discrimination against Women, and the Economic, Social and Cultural Rights and on Civil and Political Rights), any explicit references to older adults in required international human rights instruments are limited.

Applying the principles of human rights (equality and non-discrimination, participation, transparency, accountability and sustainability) within disease responses can reduce inequalities in access to water, sanitation and hygiene (WASH) and health services, and participation in daily activities. Community-level hygiene and disease prevention programmes are also an opportunity for WASH actors to practice inclusive WASH, something the sector has been prioritising in recent years.

Are people with disabilities and older adults at a higher risk during infectious disease outbreaks? - example of COVID-19

People with disabilities, older adults and older adults with disabilities may be more likely to become infected with COVID-19, and if infected, they may be more likely to experience severe illness, which can lead to hospitalization, intensive care, ventilation, or death. The risk of severe illnesses increases with age and is further increased if there are any underlying medical conditions. In addition to these direct effects of COVID-19, these populations may also be more likely to experience more severe secondary impacts.

We describe the reasons for this in more detail below. Note that whilst this section is written with COVID-19 in mind, some principles apply to other infectious diseases.

Direct consequences of COVID-19 on people with disabilities, older adults and older adults with disabilities

  • Mortality rates: People with disabilities, older adults, and older adults with disabilities, particularly those with underlying health conditions, are at a higher risk of dying from COVID-19. One in three older people have a disability and because people with disabilities are more likely to have other pre-existing health conditions (such as diabetes, asthma, hypertension and chronic pulmonary obstructive disease), which put them in higher risk categories for developing serious COVID-19 symptoms should they become infected. Between January 2020 and February 2021, 58% of the 105,213 COVID-19 associated deaths in the UK occurred in people with disabilities. These factors are displayed in the image below which shows COVID-19 mortality rates by age and according to pre-existing health conditions. This trend was also witnessed in the Ebola crisis, wherein people with disabilities accounted for a disproportionate burden of morbidity and mortality rates.

Source: Chinese Centre for Disease Control and Prevention on the BBC

  • Increased exposure due to a reduced ability to practice physical distancing: People with disabilities and older individuals may be reliant on caregivers to aid with common daily tasks, so physical distancing and isolation measures may be particularly challenging or impossible to practice. Caregivers going in and out of households may also put people with disabilities, older people and their families at higher risk of exposure to the virus. However, caregivers play a vital role in allowing people with disabilities and older people to manage daily lives. In addition, data from Iraq, India, Ethiopia and Tanzania show that up to 95% of older adults lived alone during the COVID-19 crisis. Older adults are told to self-isolate for extended periods of time to protect over-stretched healthcare systems, but social isolation can put older adults at a greater risk of mental health problems, such as anxiety and depression.

  • Increased exposure due to inaccessibility of built infrastructure: People with disabilities, older adults and older adults with disabilities may be unable to avoid coming into contact with surfaces that others have touched, putting them at increased risk of being exposed to the virus. For example, people with disabilities, older adults and older adults with disabilities are more likely to have limited access to safe WASH services and facilities. Even in households that have WASH facilities available, household members with disabilities may not be able to use them in an acceptable or hygienic manner.

  • Fear, confusion and anxiety: People on the autism spectrum, or who have dementia or Alzheimer’s Disease may experience greater levels of confusion, anxiety and fear if their routines are disrupted. People with existing mental health conditions who have developed ways to live with distress or other symptoms of mental health conditions may experience additional ‘triggers’ during the crisis. For instance, people who have a history of excessive handwashing and cleaning to avoid contamination, but have successfully managed this compulsion, may experience heightened anxiety and renewed symptoms during COVID-19. In Iraq, findings from a rapid needs assessment on the impacts of COVID-19 on older adults, show that 74% of older adults felt worried either ‘all the time’ or ‘most of the time’ and 22% reported being unable to cope.

  • Accessing services remotely: In many settings, physical distancing restrictions have resulted in an increase in digital or remote healthcare approaches, instead of face-to-face consultations. These present additional barriers to accessing healthcare for people with disabilities, older populations and older adults with disabilities as new technologies are not always accessible or inclusive. This may be because services are not in accessible formats. People with disabilities and older adults may also have reduced access to technologies, such as mobile phones.

Secondary impacts of COVID-19: People with disabilities and older adults face inequalities that may be exacerbated during the COVID-19 pandemic. These include:

  • Access to other health services: People with disabilities, older adults and older adults with disabilities face existing inequalities in accessing health care services (e.g. antenatal care services, outpatient care when needed, mammograms and assistive products) and are twice as likely to find healthcare provider’s skills and facilities inadequate. A multi-country survey conducted in 2011 found that 63% of older adults (+60 years) faced difficulties in accessing healthcare when required. People with disabilities, older adults and older adults with disabilities are also less likely to be able to afford the health care they need. People with disabilities are 50% more likely to suffer catastrophic health expenditures. 2020 data from Cox’s Bazar in Bangladesh show how COVID-19 may worsen inequities for older adults and people with disabilities.

  • Education: Globally, there are an estimated 240 million children with disabilities. People with disabilities are less likely to start school at the same age as their peers and are less likely to remain in education for as long as their peers. According to a 2021 UNICEF report, children with disabilities are 49% more likely to have never attended school before and 47% more likely to drop out of primary education. This has implications for the way information about COVID-19 is communicated to people with disabilities. School closures may also have more profound effects on children with disabilities and their families who may lack access to learning support measures which would enable home learning. This may make it harder for families to cope.

What do we know in general about disability, ageing and WASH access?

People with disabilities, older adults, older adults with disabilities and those that care for them, often have a greater need for WASH facilities and services and may also have different WASH requirements than people without disabilities. Below we summarise some key insights from research on disability, ageing and WASH:

  • Inaccessible WASH: WASH access is considered to be one of the biggest challenges of daily life for many people with disabilities.

  • A range of barriers to accessing WASH: People with disabilities, older adults and older adults with disabilities face a diverse range of barriers to access. These include physical barriers and environmental factors, such as uneven terrain or muddy ground, as well as barriers associated with built infrastructure, such as steps or inappropriate pump handles. Studies show that people with disabilities find it difficult to use the toilet without coming into contact with urine or faeces, exposing them to pathogens. In Vanuatu, this was more likely for older adults, people with physical disabilities and older adults with disabilities. Institutional barriers include policies and institutions within the WASH sector that overlook the needs of people with disabilities and older adults or prevent their participation in the design and delivery of WASH programmes. Lastly, social barriers arise through interaction with other people and result from cultural beliefs or practices. Social barriers may include beliefs that a disability is due to a curse or is contagious and consequently, that people with disabilities should be kept away from WASH facilities. The barriers people with disabilities, older adults and older adults with disabilities face when accessing WASH typically vary by individual, socio-demographic factors and context.

  • Ensuring meaningful participation is vital: Improving WASH access for people with disabilities, older adults and older adults with disabilities is challenging to do at scale. It is likely to require meaningful consultation with people with disabilities and older adults on infrastructure, the sharing of a range of inclusive WASH technologies, providing support to these populations (financial, social and in terms of labor), and thorough training of staff on inclusive programming. See this paper for guidance on conducting participatory research on disability in low resource settings.

  • Increased marginalisation during humanitarian crises: The barriers that people with disabilities and older adults face when accessing WASH facilities and services are often more pronounced in crises, given the changes that crises cause to the physical and social environment. During emergencies, people with disabilities, older adults, and older adults with disabilities are more likely to be marginalised by WASH programmes. For further information, see this repository from the International Disability Alliance, which includes resources focused on disability inclusive WASH during humanitarian emergencies.

  • People who experience incontinence have additional WASH requirements: Incontinence is a complex social and medical issue, and people who experience it and their caregivers need to use more water and soap for washing hands, bathing and doing the laundry, in addition to ensuring easy access to a toilet or other assistive products. Without it, the health and dignity of people who experience incontinence and their caregivers is compromised. Older adults, pregnant and new mothers, children, people with disabilities, and older adults with disabilities are most likely to experience it, and severity increases with age. Research in Vanuatu showed that people with disabilities were two times more likely to experience incontinence than people without disabilities. The Sphere Standards, a set of standards for humanitarian response, now includes guidance on addressing incontinence in the WASH chapter.

  • Intra-household WASH inequalities: Data from 34 countries shows that households that include a person with a disability typically have reduced access to key water and sanitation services. Even if households with a person with a disability have access to WASH facilities, the individual with a disability typically has reduced access in comparison to other family members. They also face greater challenges in accessing facilities and services autonomously, consistently, hygienically, with dignity and privacy, and without pain or fear of abuse.

What specific barriers might people with disabilities, older adults and older adults with disabilities face in relation to handwashing with soap?

Handwashing with soap remains one of the most important behaviours for interrupting the transmission of enteric and respiratory diseases. Below we describe common challenges that people with disabilities, older adults, older adults with disabilities may face in practicing hand washing or engaging with handwashing promotion programmes:

  • Greater need for handwashing: In contexts where people lack sufficient access to assistive products, such as crutches or wheelchairs, people with disabilities, older adults and older adults with disabilities may need to touch the ground or surfaces to move around and so, need to wash their hands with soap and water more often. When assistive products like crutches and wheelchairs are available, these items can pose a risk for contamination, since immediately after handwashing with soap, people need to touch the product which may not be clean.

  • Impairment related limitations: People with physical impairments may have difficulties rubbing their hands together thoroughly. People with intellectual and cognitive impairments, including dementia, may not remember when, how or why hands should be washed, or recognise the significance of handwashing in reducing risks.

  • Limited support from caregivers: People with disabilities, older adults and older adults with disabilities may be reliant on caregivers to help them to practice regular handwashing. In some cases, caregivers may not prioritise the needs of the individual. In other cases, caregivers offer limited support because they lack information on how to support another person’s WASH requirements, and they may not have the required social support or guidance to do so. Additionally, evidence from Zimbabwe, India, Tanzania, Cambodia and Uganda show that during the COVID-19 pandemic, older adults also cared for others.

  • Inaccessible handwashing infrastructure: People with disabilities, older adults and older adults with disabilities may be less able to independently collect, carry or pour water (resulting in a reduced quantity of water available for handwashing) and may have more difficulties reaching soap and water or using standard handwashing facilities. These gaps can become more pronounced during outbreaks as hand washing facilities are rapidly scaled up. For example, this was noted in Sierra Leone during the Ebola crisis, where people with disabilities reported not having access to a toilet or water source. During the COVID-19 pandemic, up to 31% to 62% of older adults in Zimbabwe, Iraq, Uganda, Tanzania, Rwanda, India and Ethiopia reported that there were not enough WASH facilities. Many worried that existing facilities were contaminated and that they would be unable to access facilities during lockdown.

  • Inaccessible information or hygiene promotion programmes: For people with sensory or intellectual impairments – including older adults with visual impairments - hygiene promotion materials may be more difficult to read or comprehend. Often in humanitarian responses, it is uncommon that these communication materials are designed in a more accessible way. For instance, during COVID-19, 46% of older adults in Zimbabwe faced challenges accessing COVID-19 related information, whilst many older adults with disabilities in Cambodia reported major barriers. Results were similar in Uganda, but the barriers increased for older adults with disabilities, and for older women compared to older men.

  • People with disabilities, older adults and older adults with disabilities are also more likely to remain at home, while others in the household attend hygiene promotion events or kit distributions. There are often both physical and social barriers that contribute to this.

How can we ensure people with disabilities, older adults, older adults with disabilities and their caregivers are included in all hygiene promotion programmes?

Involving people with disability, older adults, and older adults with disabilities is everyone’s responsibility and requires action by households and communities, by governments and health care workers and by organisations involved in the response. Generally, inclusion of these populations in programmes requires a twin track approach of mainstreaming and targeting. This is further explained in the diagram below, which focuses on those with disabilities, but is also relevant for older adults:

Source: DFID

During outbreaks, key organisations typically produce disease-specific guidelines on implementing inclusive responses. For instance, the World Health Organisation (WHO), UNICEF, Centers for Disease Control and Prevention, and HelpAge International have all developed guidance on how to involve people with disabilities and older adults in COVID-19 response programs. The International Disability Alliance and Water for Women also have useful general resources. Below we summarise some key messages from these resources and explain how they can be applied within hygiene programmes specifically.

1. Think about disability and ageing when designing your response programmes and fully resource it. Ensure budgets include resourcing for staff capacity development on disability inclusion and ageing, and resourcing for all related programme and policy activities.

2. Conduct a rapid review of the WASH related barriers and challenges experienced by people with disabilities, older adults, older adults with disabilities and their caregivers during the outbreak. WaterAid has developed step by step COVID-19-specific guidance on how to do this, though principles and activities can be applied to other diseases. Apply Wash’Em’s handwashing demonstration tool to quickly explore current handwashing behaviours and barriers to practicing these behaviours among these populations. WEDC’s accessibility audit can be used to engage people with disabilities, older adults and older adults with disabilities in the design of inclusive infrastructure. COVID-19 specific guidance exists for people who provide unpaid care to friends or family, tips for family caregivers during COVID-19 outbreaks and how to support people from a distance. For examples of quantitative and qualitative tools used to assess WASH barriers faced by people with disabilities, see the section on the Vanuatu study here.

3. Conduct a rapid appraisal of sources of information, perceptions, access and uptake of vaccines by people with disabilities, older adults, older adults with disabilities and their caregivers. Together with older adults, people with disabilities and their carers understand trusted sources of information in relation to a vaccination programme. Thereafter, understand their journey of where and how they can get a vaccine – the opportunities and challenges, which need to be adapted in your programme. For example, mobile clinics can provide an effective way in administering vaccines for people that are unable to travel to a public vaccine centre. WHO and UNICEF have a policy brief centred to disability considerations for COVID-19 vaccination. The brief presents consideration and actions for the following stakeholders to ensure equity in access to vaccination against COVID-19 – persons with disabilities and their support networks, governments, health service providers delivering vaccinations, organisations of persons with disabilities, disability service providers, residential institutions and long-term care facilities, and communities. CDC has a toolkit for people with disabilities, which includes guidance and tools to help people with disabilities and those who serve or care for them to make decisions, protect their health and communicate with their communities.

4. Identify ways of engaging people with disabilities, older adults, older adults with disabilities and their caregivers at all stages of response programmes, from planning to evaluation. Work with community leaders and service providers to identify households that include older adults and people with disabilities. Effectively engaging people with disabilities requires implementing organisations to remember that not all disabilities can be seen and some people with disabilities may be hard to identify, because they spend most of their time at home. Programmes must actively seek to include people with different impairments, ages, genders, and their caregivers, because the needs of these individuals will not be homogenous. It is important to continue to engage people with disabilities, older adults, older adults with disabilities and their caregivers throughout the planning, rapid review, design, implementation, and monitoring and evaluation stages of your programme. This is important because even when programmes are designed with inclusivity in mind, they can still encounter challenges during delivery. See this mental health and psychosocial support toolkit from the IASC for guidance on engaging older people during COVID-19 outbreaks.

5. Consult and partner with Organisations of Persons with Disabilities, Disability Service Providers and Older People’s Associations during the outbreak. In most countries, there are existing Organisations of Persons with Disabilities (OPD). When Disability Service Providers work with these organisations and Older People’s Associations (OPAs), they can help inform each stage of your programme to ensure it is inclusive. Key individuals from these organisations may be able to continue to work and engage with people in communities when larger organisations are unable to do this. However, bear in mind that these organisations may be over burdened with requests to support and advise disease responses. OPDs and OPAs often have limited resources and capacities, so it is vital to support their core costs, including overheads, organisational and capacity development efforts, and fund any joint activities. Make sure to consider who OPDs represent and ensure all impairment groups and genders are represented. For instance, some OPDs are umbrella organisations for many impairment groups, while others may focus on specific impairment groups.

6. Provide assistance to people with disabilities, older adults, older adults with disabilities and caregivers to enable them to carry out protective measures. This may include providing households that have a person with a disability and older adults additional hygiene products (e.g. more soap or cleaning products), specific hygiene items to address their needs (e.g. incontinence products and menstrual hygiene materials and items to support end of life care. Make sure that these items also reach people in residential settings and care facilities. Additionally, the households with a person with a disability or older adults 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. Households with people with disabilities, older adults and older adults with disabilities may also need targeted shelter assistance to enable them to practice physical distancing. This can be carried out directly, but should be in collaboration with DPOs and OPAs or by referral to disability service providers. Also, there are guidance and resources available to help people with intellectual and cognitive impairments to understand the focal disease and how to prevent infection, and for caregivers to support communication. For COVID-19 specific guidelines, see this resource from Beyond Words and this guidance from the UK government.

7. Provide advice on how to keep support structures and assistive products clean. People with disabilities, older adults and older adults with disabilities may need to hold on to support structures to use WASH and other facilities (e.g. handrails). Within households, people may have built support structures out of wood as it is cheaper than metal, but it is harder to clean. Encourage people to paint or varnish wood, so that it is easier to clean and therefore more hygienic. These populations may also use assistive products, such as walking sticks, wheelchairs, crutches, and communication aids. Depending on your focal disease, tough points and surfaces might become contaminated; if so, they must be cleaned regularly with soap and water to mitigate the risk of the pathogen from spreading. COVID-19 guidance for wheelchair users is available here. After cleaning assistive products, hands should be washed with soap. Products should be cleaned at the following times: when entering or leaving the household, after coming into physical contact with anyone outside the household, after touching surfaces when outside the home (e.g. door knobs, hand railing etc) and after visiting public spaces. People with disabilities, older adults, older adults with disabilities and caregivers must be made aware of this. For WASH facilities in public locations, funding for operation and maintenance needs must be included in programmes and should establish processes for the regular cleaning of surfaces and handrails. See our guidance on cleaning and disinfection for more information.

8. Make all WASH facilities and services, including handwashing stations accessible. If people with disabilities, older adults and older adults with disabilities want to wash their hands, but are unable to reach or turn the lever on the handwashing facility, they may have to go to a lot of effort to get somewhere that has accessible soap and water (contaminating surfaces along the way), or they may just be forced to not wash their hands altogether. There are several resources documenting how to make handwashing facilities more inclusive. These include Compendium of Accessible WASH Technologies, the IDS Compendium of Handwashing Technologies for Low Resource Settings and the Compendium of Hygiene Promotion in Emergencies. Conduct accessibility and safety audits of both existing and new WASH facilities, to make sure all people can use them. Ensure that people with different impairments, ages, genders, and their caregivers can take part. Accessibility and safety audits are available for water points, latrines, school latrines, menstrual hygiene management facilities and healthcare facilities.

9. During outbreaks, people are encouraged to wash clothes and bodies more regularly, so accessible bathing facilities are needed. The Compendium of Accessible WASH Technologies includes designs for accessible bathing facilities. Also support people with disabilities, older adults, older adults with disabilities and caregivers in accessing assistive devices, including lifting devices, through disability service providers and OPAs where these exist. Lifting devices that can be made locally and at a low cost are included in CBM’s guidelines on supporting hygiene at home for people with disabilities.

10. Apply a gender lens to disability and ageing inclusive WASH COVID-19 responses. It is vital that all disability and ageing inclusion efforts are gender aware, because WASH is a gendered issue. Women and girls also have specific WASH needs, such as maternal, menstrual and menopausal health. Women and girls within the family often support people with disabilities and older adults. In Cox’s Bazar, Bangladesh, 41% of older people who participated in HelpAge’s rapid review reported a lack of privacy at the WASH facilities, and this was a greater concern for older men than older women. For more information on considering gender in disease response programmes, see our resource on this.

11. Make sure communication and programme delivery processes reach people with disabilities, older adults, older adults with disabilities and caregivers and that they are accessible. It is vital that messaging does not inadvertently increase stigma and discrimination towards people with disabilities and older adults. Hygiene approaches like handwashing with soap and water can focus on an individual changing behaviour. If people don’t or can’t change their behaviours, this can lead to blame and anger from others, which can be heightened during an outbreak. As well as ensuring that everyone can access WASH facilities, all hygiene behaviour change messaging must be about supporting each other. WaterAid’s guidance for creating empowering and inclusive WASH and COVID-19 responses includes do’s and don’ts on how to integrate principles of equality and non-discrimination in messaging. In the table below we draw on this guidance and add some additional points for disability inclusion. CBM’s Humanitarian Hands on Tool (HHoT) app is a step by step guide on inclusive humanitarian fieldwork. Relevant cards include communication, handwashing and hygiene. This short video gives an overview of the HHoT app. UNICEF also provides guidance and tips on communicating in an accessible way during the COVID-19 crisis, though principles and activities can be applied to other diseases.

How to make behaviour change and hygiene messaging disability and ageing inclusive

Do’s

Don’ts

  • Frame messages in way that builds community spirit and collective action: use terms like ‘we’, ‘together’.

  • Focus only on individualistic messages, which reinforce individualistic responses and actions.

  • Use emotional triggers like shame or guilt or fear – we have a responsibility to avoid promoting further hysteria or blame.

  • Use negative language.

  • Portray women, men, girls and boys with different impairments and different ages as part of community groups and activities in communication materials.

  • Just include visuals of people with physical disabilities – develop communication materials that depict people with a range of impairments.

  • Show people with disabilities and older adults supporting or interacting with others.

  • Exclude people with disabilities and older adults in visuals of groups of people.

  • Direct messaging or responsibility for ‘change of behaviour’ at one group of people (i.e. women, girls, mothers) – rather talk about parents, families, relatives and professional caregivers supporting people with disabilities.

  • Acknowledge and respond to the diverse needs of people with different impairments, and their caregivers

  • Depict a range of handwashing facilities that reflect local circumstances but are adapted for a range of needs.

  • Use blanket approaches that suggest that everyone can change behaviours without any specific adaptations.

  • Tailor messages for caregivers of people with disabilities and older adults on the importance of supporting another person to maintain hand and personal hygiene. This includes menstrual hygiene, incontinence management, and the cleaning of any assistive products used.

  • Use or promote existing guidance and resources for caregivers supporting people with learning disabilities, people with Alzheimer’s Disease, dementia and autism during the outbreak.

  • Promote social support networks for caregivers (where they exist), or support DPOs and OPAs to develop these.

  • Forget that caregivers are an important target group who need support and information on how to support another person to maintain personal hygiene as independently as possible, whilst also ensuring they are adequately protected.

Provide information that is accessible. Do the following:

  • Make it visual, text-light and use simple, local language.

  • Use large font, high contrast images and text (appropriate for people with colour vision deficiencies), and print materials on non-glare paper.

  • Use sign language, Easy Read, plain language, audio, Braille, captioned media, augmentative and alternative communication.

  • Keep information simple and repeat it. Use give-away materials to reinforce messages for people with intellectual or cognitive disabilities.

  • Ensure everyone involved in the response, including caregivers and community healthcare workers, are trained on communicating effectively with people with disabilities and older adults.

  • Rely on high tech solutions to communicate messages. Not everyone will have the internet or a phone, and technologies may not be accessible to everyone.

As part of the Do No Harm approach: Do a risk assessment before and throughout the campaign to:

  • Monitor backlash on social media, such as derogatory comments about people with disabilities or older people.

  • Delete and respond to negative comments and then educate

  • Check that it does not amplify or put blame on one group (or if the audience is interpreting it as such).

  • Develop safe and responsive feedback and complaint mechanisms for people with disabilities and older adults.

  • Ostracise or promote ‘calling out’ of people or parts of the population. This may encourage vigilant tactics or backlash.

  • Use terms such as “victim”; “infecting” or “spreading to others”

Do’s and don’ts of making behaviour change and hygiene messaging disability and ageing inclusive. Source: adapted from Wateraid, CBM and UNICEF.

12. If conducting in person activities in communities, make sure programmes actively enable people with disabilities, older adults, older adults with disabilities and caregivers to be involved. Depending on the context and focal disease, in-person activities might be minimised during the outbreak. However, if you have assessed the risk in your context and have given attention to ensure participation is safe and does not pose additional risks of contracting the disease for these populations, there are a range of simple ways that programming can be made inclusive. To start with, don’t assume that if people with disabilities or older adults are not attending or participating in hygiene promotion that it's because they are not interested. There may be a range of barriers preventing their participation, and these are important to understand. When starting work in a community, work with local leaders, OPDs and OPAs to inform them about your proposed programme and get them to help you identify people with disabilities and older adults in their community. If small, physically distanced group events are being held, then these should be close to the households of people with disabilities or older adults. At these gatherings people with disabilities, older adults and older adults with disabilities should be encouraged to sit at the front. If people need to travel to access programme services (e.g. at health centres or public distribution points), then special transport should be arranged for people with disabilities and older adults. If setting up WASH committees, actively encourage people with disabilities and older adults to participate and support them to be able to do this effectively and safely. Conduct additional follow up visits to households that have people with disabilities and older adults, as they may not always feel comfortable expressing their questions or talking about their WASH needs in front of others. If hygiene promoters are doing household visits, make sure they ask this simple question: ‘Can everyone in the family use this handwashing facility comfortably?’. Use this question to spark a discussion and encourage people to adapt facilities to make them more inclusive.

13. Promote disability and ageing inclusion within healthcare services. This includes raising staff awareness about disability and ageing, the need to provide healthcare services without discrimination, how to communicate effectively to people with a range of impairments, and ensuring WASH facilities are accessible within health care facilities. This is particularly important for achieving vaccination targets.

14. Advocate to governments and other organisations that disability and ageing inclusion measures should be built into hygiene policies, implementation plans and strategies. This advocacy and policy revision process should meaningfully include people with disabilities and older adults or associations. For further information on policy analysis and implementation, see this WASH policy analysis and this content analysis from Cambodia and Bangladesh, or this qualitative study on disability-inclusive WASH policy in Cambodia. We have also produced a resource on advocating for policy change.

15. Be evidence driven. Learn from other epidemics and document your own organisational experiences of doing inclusive programming as part of the disease outbreak response. Collect data on gender, disability and ageing. This could be gathering qualitative and / or quantitative data. Embedding the Washington Group Short Set of questions to routine data collection is advised by DFAT, FCDO and other donors in order to disaggregate data on disability. Collect sex and age using 10 years cohorts (50-59, 60-69, 70-79, 80+). Apply sex and age disaggregated data methodology to ensure WASH activities are appropriate and targeted to meet the needs of people with disabilities, older adults and older adults with disabilities in humanitarian settings.

How can our organisation assess whether our disease outbreak response programmes are inclusive?

The Hygiene Hub recommends using the COVID-19 Inclusive WASH Checklist, which was developed by reviewing and merging existing human rights frameworks and inclusive WASH checklists. Developed for practitioners, it aims to support the inclusion of people with disabilities, older adults and caregivers in COVID-19 WASH interventions and can be applied when planning, designing, monitoring and evaluating WASH programmes for other infectious diseases.

The checklist contains two target groups: disability and ageing. Caregivers are included within both. Fifteen core concepts of human rights are listed on the left, including Non-discrimination, Participation, Family resource and Access. Each core human rights concept has a guiding principle, which are operational statements. Every guiding principle has a selection of suggested activities, which if carried out, would contribute to fulfilling the core human rights concept.

This checklist can be used to assess the extent to which core concepts of human rights for people with disabilities and older adults are considered in WASH programmes and disease outbreak response programmes, as well as the quality of any commitments made. To do this, a reviewer would:

  1. Read a programme document and identify when a suggested activity, guiding principle and core concept of human rights is referenced against disability and / or ageing.

  2. Assign a quality of commitment score to each reference: 0=Red= concept not mentioned; 1=Orange=concept only mentioned; 2=Yellow=concept mentioned and explained; 3=Green=specific policy actions identified to address the concept; 4=Cyan=intention to monitor concept was expressed

  3. Complete the Inclusive WASH Checklist with this information

Once completed, the reviewer will see which core concepts are referenced, which are not, and the quality of commitments made to core concepts of human rights across disability and ageing. To improve inclusion, additional activities can be added and quality of existing references can be improved.

For other WASH and inclusion frameworks and checklists see these links:

For an example of an inclusive COVID-19 response programme designed for people with disabilities, see this case study on Amref’s work in Kenya.

This report was written in collaboration with:

Editor's notes:

Written by: Jane Wilbur

Initially Reviewed by: Hannah Kuper, Islay Mactaggart, Sian White, Chelsea Huggett

Secondary review by: Bethany Caruso, Diana Hiscock, Islay Mactaggart

Last updated: 01.03.2023

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