Why do we need to include people with disabilities in the COVID-19 response?
People with disabilities represent a large portion of the world’s population
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:
- 1 in 3 people are aged over 60 and are at greater risk from COVID-19.
- An estimated 110-190 million adults have significant difficulties in functioning and often will rely on professional or informal caregivers.
Including people with disabilities 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, which has been signed by 163 countries, and stipulates that humanitarian responses must be disability inclusive (Article 11). Recently, 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”.
As a number of human rights specialists state in this blog, applying the principles of human rights (equality and non-discrimination, participation, transparency, accountability and sustainability) within COVID-19 responses can reduce inequalities. Community-level hygiene and COVID-19 prevention programmes are also an opportunity for WASH actors to practice disability-inclusive WASH, something the sector has been prioritising in recent years.
Are people with disabilities at higher risk during the COVID-19 pandemic?
People with disabilities may be more likely to become infected with COVID-19, and if infected may be more likely to experience serious symptoms or death. In addition to these direct effects of COVID-19 people with disabilities may also be more likely to experience more severe secondary impacts. We describe the reasons for this in more detail below.
Direct consequences of COVID-19 on people with disabilities
- Mortality rates: People with disabilities and older people, particularly those with underlying health conditions, are at a higher risk of dying from COVID-19. This is because one in three older people have disabilities and because people with disabilities are more likely to have other pre-existing health conditions (such as diabetes, asthma and chronic pulmonary obstructive disease), which put them in higher risk categories for developing serious COVID-19 symptoms should they become infected. These factors are shown in the image below which shows COVID-19 mortality rates by age and according to pre-existing health conditions.
Source: Image adapted from data on the BBC
- Increased exposure due to a reduced ability to practice physical distancing: People with disabilities may be reliant on carers to aid with common daily tasks, so physical distancing and isolation measures may be particularly challenging or impossible to practice. Carers going in and out of households may also put people with disabilities and their families at higher risk of exposure to the virus.
- Increased exposure due to inaccessibility within built infrastructure: People 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 are more likely to have limited access to safe water, sanitation and hygiene (WASH) services and facilities. Even where households 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 autistic spectrum 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.
- 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 healthcare as new technologies are not always accessible or inclusive. This may be because services are not in accessible formats but may also simply be because people with disabilities may have reduced access to technologies such as mobile phones.
Secondary impacts of COVID-19: People with disabilities face inequalities that may be exacerbated during COVID-19 pandemic. These include:
- Access to other health services: People with disabilities face existing inequalities in accessing health care services (e.g. antenatal care services, outpatient care when needed, mammograms and assistive devices) and are twice as likely to find healthcare provider’s skills and facilities inadequate. People with disabilities are also less likely to be able to afford the health care they need and 50% more likely to suffer catastrophic health expenditure. These inequities are likely to be exacerbated during COVID-19 response as indicated by people with disabilities in Cox’s Bazar in Bangladesh.
- Secure employment: People with disabilities are 50% less likely to be employed than non-disabled people. In low and middle income settings people with disabilities may be five times less likely to be employed. If working, people with disabilities are more likely to be in the informal sector and face higher risks of inadequate social protection. Women with disabilities are less likely than men to be employed. The economic consequences of COVID-19 are therefore more likely to result in reduced employment for people with disabilities since informal or part-time workers are more likely to be laid off and have work hours reduced. Associated with this, people with disabilities may experience higher rates of poverty, food insecurity or live in inadequate housing.
- Violence: People with disabilities are at a greater risk of violence, and these risks may be further increased as a result of COVID-19 lockdowns. Women with disabilities may be particularly vulnerable to the increases in domestic violence.
- Education: 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. This has implications for the way information about COVID-19 is conveyed 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.
- Stigma, discrimination and social exclusion: People with disabilities are more likely to face stigma, discrimination and social exclusion within the legal, public and private spheres which may put them at greater disadvantage during this crisis.
What do we know in general about disability and WASH access?
People 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 to people without disabilities. Below we summarise some key insights from research on disability and WASH:
- WASH access is considered to be one of the biggest challenges of daily life for many people with disabilities.
- People 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. Institutional barriers include policies and institutions within the WASH sector that overlook the needs of people with disabilities 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 disability is due to a curse or is contagious and that consequently that people with disabilities should be kept away from WASH facilities.
- The barriers people with disabilities face when accessing WASH typically vary by individual, socio-demographic factors and context.
- Improving WASH access for people with disabilities is challenging to do at scale. It is likely to require meaningful consultation with people with disabilities on infrastructure, the sharing of a range of inclusive WASH technologies, providing support to people with disabilities (financial, social and in terms of labor) and thorough training of staff on inclusive programming.
- The barriers that people with disabilities 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 are more likely to be marginalised by WASH programmes.
- The International Centre for Evidence in Disability’s research in Vanuatu showed that people with disabilities were two times more likely to experience incontinence than people without disabilities. Incontinence is a complex social and medical issue, and people who experience it and their carers need to use more water and soap for washing hands, bathing and doing the laundry, as well as easy access to a toilet. Without it, the health and dignity of people who experience incontinence and their carers is compromised. The Sphere Standards, a set of standards for humanitarian response, now include incontinence.
- Data from 34 countries shows that households that include a person with a disability typically have less access to WASH. 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 and had greater challenges in accessing facilities services autonomously, consistently, hygienically, with dignity and privacy, and without pain or fear of abuse.
What specific barriers might people with disabilities face in relation to handwashing with soap?
Hand washing with soap remains one of the most important behaviours for interrupting the transmission of COVID-19. Below we describe common challenges that people 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 devices, such as crutches or wheelchairs, people 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. Where assistive devices like crutches and wheelchairs are available, these items can pose a risk for contamination since immediately after handwashing with soap people with disabilities need to touch the device which may not be clean.
- Impairment related limitations: For people with physical impairments this could include difficulties rubbing hands together thoroughly. People with intellectual and cognitive impairments may not remember when, how or why hands should be washed.
- Limited support from carers: People with disabilities may be reliant on carers to help them to practice regular handwashing. In some cases carers may not prioritise the needs of the individual with disability. In other cases limited support may be due to carers lacking information about how to support another person’s WASH requirements, and may not have the required social support to do so.
- Inaccessible handwashing infrastructure: People with disabilities may be less able to independently collect or pour water (resulting in 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.
- Inaccessible information or hygiene promotion programmes: For people with sensory or intellectual impairments hygiene promotion materials may be more difficult to read or comprehend. Often in humanitarian responses it is unusual that these communication materials are designed in a more accessible way. People with disabilities are also more likely to remain at home while others in the household attend hygiene promotion events or distribution of kits. There are often both physical and social barriers that contribute to this.
How can we ensure people with disabilities are included in all COVID-19 hygiene promotion programmes?
Involving people with disability 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 people with disabilities in programmes requires a twin track approach of mainstreaming and targeting. This is further explained in the diagram below:
The World Health Organisation (WHO), UNICEF and SDDirect have all developed guidance on how to involve people with disabilities in COVID-19 response programs. Below we summarise these ideas and explain how they can be applied within hygiene programmes specifically.
- Think about disability-inclusion when designing your COVID-19 response programmes and fully resource it. Ensure budgets include resourcing for staff capacity development on disability inclusion, and for all disability related programme and policy activities.
- Conduct a rapid review of the WASH related barriers and challenges experienced by people with disabilities and their carers 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 people with disabilities. WEDC’s accessibility audit can be used to engage people with disabilities in the design of inclusive infrastructure.
- Identify ways of engaging people with all types of disabilities at all stages of COVID-19 programmes, from planning to evaluation. Work with community leaders and service providers to identify households that include a person with a disability. Effectively engaging people with disability 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 carers, and the needs of these individuals will not be homogenous. It is important to continue to engage people with disabilities throughout the planning, rapid review, design, implementation, 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.
- Consult and partner with Disabled Persons Organisations and Disability Service Providers during COVID-19. In most countries there are existing Disabled Persons Organisations (DPO) and Disability Service Providers working with these organisations 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 with and engage people in communities when larger organisations are unable to do this. However bear in mind that DPOs may be over burdened with requests to support and advise on COVID-19 responses. 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. Make sure to consider who DPOs represent and ensure all impairment groups and genders are represented. For instance, some DPOs are umbrella organisations, some focus on specific impairment groups.
- Provide assistance to people with disabilities and carers to enable them to carry out COVID-19 protective measures. This may include providing households with a person with a disability additional hygiene products (e.g. more soap or cleaning products) or specific hygiene items to address their needs (e.g. incontinence products and menstrual hygiene materials). Make sure that these items also reach people in residential settings and care facilities. Additionally these 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. Households with disabilities may also need targeted shelter assistance to enable them to practice physical distancing. This can be carried in collaboration with DPOs or by referral to disability service providers. There are also guidance and resources to help people with intellectual and cognitive impairments to understand COVID and how to prevent infection, and for carers to support this.
- Provide advice on how to keep support structures and assistive devices clean. People 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. 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 regularly with soap and water to stop the virus spreading. Further guidance for wheelchair users is available here. After cleaning, hands must be washed with soap. Assistive devices should be cleaned at the following times: when entering or leaving the household, after coming into physical contact with anyone outside your household, after touching surfaces when outside the home (e.g. door knobs, railing, money etc) and after visiting public spaces. People with disabilities and carers must be made aware of this. For WASH facilities in public locations funding for operation and maintenance needs must be included in programmes and need to consider establishing processes for regularly 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 want to wash your 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 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. Do accessibility and safety audits of 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 carers 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 to access assistive devices, including lifting devices, through disability service providers 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 inclusive WASH COVID-19 responses. It is vital that all disability inclusion efforts are gender aware because WASH is a gendered issue. They also have specific WASH needs, such as maternal or menstrual health. Women and girls within the family often support people with disabilities. 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 and are accessible. It is vital that messaging does not inadvertently increase disability stigma and marginalisation. Sometimes 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, 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. Below we draw on this guidance and add some additional points for disability inclusion:
DO: Frame communication messages in a way that builds community spirit and collective action: use terms like ‘we’, ‘together’.
DON’T: Do not focus only on individualistic messages, which reinforce individualistic responses and actions as this may disadvantage people with disabilities. Do not use emotional triggers like shame or guilt or fear – we have a responsibility to avoid promoting further hysteria or blame. Avoid negative language.
DO: In graphics or videos portray a diverse group of people including women, men, girls and boys with different impairments. In graphics or videos portray people with disabilities supporting or interacting with others. Depict a range of handwashing facilities that reflect local circumstances but are adapted for a range of needs.
DON’T: Try not to just include visuals of people with physical disabilities. Do not leave out people with disabilities from graphics or videos.
DO: Acknowledge and respond to the diverse needs of people with different impairments and their carers. Tailor messages for carers of people with disabilities on the importance of supporting another person to maintain hand and personal hygiene. This includes menstrual hygiene management and the cleaning of any assistive devices used. Use or promote existing guidance and resources for carers supporting people with learning disabilities and autism during COVID-19. Promote social support networks for carers (where they exist), or support DPOs to develop these.
DON’T: Avoid blanket approaches that suggest that everyone can change behaviours without any specific adaptations. Do not forget that carers 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: Make communication materials more accessible. Make materials visual, text-light and use simple local language. Use large font, high contrast images and text (that are appropriate for people with colour vision deficiencies), print materials on non-glare paper. Use sign language, Easy Read, audio, Braille, captioned media, augmentative and alternative communication modes. 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, carers and community healthcare workers are trained on communicating effectively with people with disabilities.
DON’T: Do not solely 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 a ‘do no harm’ approach do a risk assessment before and during your programme. Involve people with disabilities in all material design. Monitor backlash to your materials (e.g. on social media) such as derogatory comments about people with disabilities. Delete and respond to negative comments and then advocate for the rights and needs of people with disabilities. Check that your communication materials do not amplify or put blame on one group (or if the audience is interpreting it as such).
DON’T: Do not ostracise or promote ‘calling out’ of people or parts of the population. This may encourage vigilant tactics or backlash. Avoid terms such as “victim”; “infecting” or “spreading to others”.
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 film gives an overview. UNICEF also provides guidance and tips on communicating in an accessible way.
11. If conducting in person activities in communities make sure programmes actively involve people with disabilities. In many contexts in-person activities are being minimised. However if you have assessed the risk in your context and have decided that it is still safe to go ahead then there are a range of simple ways that programming can be made inclusive. To start with, don’t assume that if people with disabilities 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 and DPOs to inform them about your proposed programme and get them to help you identify people with disabilities in their community. If small, physically distanced group events are being held then these need to be close to the households of people with disability. At these gatherings people with disabilities and older people can 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 may be arranged for people with disabilities. If setting up WASH committees, actively encourage people with disabilities to take part and then support them to be able to do this effectively and safely. Conduct additional follow up visits to households with disabilities as people 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?’. Use this question to spark a discussion and encourage people to adapt facilities to make them more inclusive.
12. Promote disability inclusion within healthcare services. This includes raising staff awareness about disability, the imperative 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 inclusion measures should be built into hygiene policies, implementation plans and strategies. When doing advocacy and policy work try to meaningfully include people with disabilities in the process.
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. What isn’t counted doesn’t count - so collect data on disability. 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.
Source: Humanity Inclusion
This Hygiene Hub resource was developed in partnership with the Water for Women, the Australian Government’s flagship WASH program which is being delivered as part of Australia's aid program.
Written by: Jane Wilbur
Last updated: 25.5.2020