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 COVID-19 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
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. Below we summarise these ideas and explain how they can be applied within hygiene programmes specifically.
1. Think about disability and ageing when designing your COVID-19 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 COVID-19. WaterAid has developed step by step guidance on how to do this. 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. Guidance exists for people who provide unpaid care to friends or family, tips for family caregivers during the COVID-19 pandemic and how to support people from a distance.
3. Identify ways of engaging people with disabilities, older adults, older adults with disabilities and their caregivers at all stages of COVID-19 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.
4. Consult and partner with Organisations of Persons with Disabilities, Disability Service Providers and Older People’s Associations during COVID-19. 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 COVID-19 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.
5. Provide assistance to people with disabilities, older adults, older adults with disabilities and caregivers to enable them to carry out COVID-19 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 COVID and how to prevent infection, and for caregivers to support this.
6. 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. These surfaces can easily become contaminated and must be cleaned regularly with soap and water to stop the virus from spreading. Further 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, railing, money 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.
Source: Tennessee Health Department
7. 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 together. There are several resources documenting how to make handwashing facilities more inclusive. These include Compendium of accessible WASH technologies and the IDS compendium of handwashing technologies for low resource settings. Conduct accessibility and safety audits of both existing and new WASH facilities to make sure all people can use them. Make sure you 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.
8. During the COVID-19 crisis 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.
9. 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 COVID-19 response programmes see our resource on this.
10. Make sure COVID-19 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 behaviours. 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. Cards relevant to COVID-19 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.
How to make behaviour change and hygiene messaging disability and ageing inclusive:
DO: Frame messages in way that builds community spirit and collective action: use terms like ‘we’, ‘together’.
DON'T: Focus only on individualistic messages, which reinforce individualistic responses and actions.
DON'T: Use emotional triggers like shame or guilt or fear – we have a responsibility to avoid promoting further hysteria or blame.
DON'T: Use negative language.
DO: Portray women, men, girls and boys with different impairments and different ages as part of community groups and activities in communication materials.
DON'T: Just include visuals of people with physical disabilities – develop communication materials that depict people with a range of impairments.
DO: Show people with disabilities and older adults supporting or interacting with others.
DON'T: Exclude people with disabilities and older adults in visuals of groups of people.
DO: Challenge gender inequalities by depicting men and boys supporting people with disabilities.
DON'T: 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.
DO: Acknowledge and respond to the diverse needs of people with different impairments, and their caregivers.
DO: Depict a range of handwashing facilities that reflect local circumstances but are adapted for a range of needs.
DON'T: Use blanket approaches that suggest that everyone can change behaviours without any specific adaptations.
DO: 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.
DO: Use or promote existing guidance and resources for caregivers supporting people with learning disabilities, people with Alzheimer’s Disease, dementia and autism during COVID-19 .
DO: Promote social support networks for caregivers (where they exist), or support DPOs and OPAs to develop these.
DON'T: 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.
DO: 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 COVID-19 response, including caregivers and community healthcare workers, are trained on communicating effectively with people with disabilities and older adults.
DON'T: 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.
DO: 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.
DON'T: Ostracise or promote ‘calling out’ of people or parts of the population. This may encourage vigilant tactics or backlash.
DON'T: Use terms such as “victim”; “infecting” or “spreading to others.”
11. 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. In many contexts in-person activities are being minimised. 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 COVID-19 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.
12. 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.
13. 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.
14. Be evidence driven. Learn from other epidemics and document your own organisational experiences of doing inclusive programming as part of the COVID-19 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, DFID 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 dissagregated 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.
Source: Humanity Inclusion
Want to know more about disability and ageing in COVID-19 hygiene promotion programmes?
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: 08.09.2020