BELFAST, Northern Ireland — The coronavirus response plans are leaving people with disabilities behind, according to advocates who are pushing for immediate corrective action.
“People with disabilities are disproportionately affected by the impacts of COVID-19 and are disproportionately left out of the response to COVID-19,” said Jimmy Innes, chief executive at Action on Disability and Development International.
While 15% of the global population lives with a disability, the prevalence is higher in low- and middle-income countries. Many people with disabilities have underlying medical conditions — such as motor neuron disease, cerebral palsy, and multiple sclerosis — that make them more vulnerable to the virus. The elderly also fall into this category — more than 46% of people over age 60 have a disability.
But people with disabilities are not at risk because they are more physically vulnerable, but because governments and authorities have largely forgotten about them, said André Felix, external communications coordinator at the European Disability Forum. Lockdown measures without exemptions and inaccessible information mean those with a disability are being impacted more than others, he explained.
This op-ed looks at why using disability-friendly language is imperative.
For example, people with disabilities may face difficulties in accessing government information because of how it’s provided, or in social distancing when they rely on physical contact with support persons.
This week, the United Nations Secretary-General António Guterres released a policy brief on disability inclusion in COVID-19 responses, urging governments “to place people with disabilities at the center of COVID-19 response and recovery efforts and to consult and engage people with disabilities.”
So what measures can organizations and governments take to ensure people with disabilities aren't left behind when tackling COVID-19? Devex asked several experts.
1. Inclusion in response plans
“First and foremost, governments need to involve and fund organizations of persons with disabilities. They need to involve them in all steps of the response and, importantly, on the recovery process,” Felix wrote in an email.
For example, Italy has included a European Disability Forum board member in a task force designing phase two of its COVID-19 response. In Denmark, the government is providing funds for disabled persons’ organizations to support those who are isolated at this time. These activities need to be expanded to all countries and should have started from the beginning of the pandemic, Felix said.
Any data collected on the coronavirus should also be disaggregated by age, gender, and disability according to Diana Hiscock, global disability advisor at HelpAge International. This will help identify the barriers people with disabilities are experiencing in accessing support.
According to aid organization Humanity & Inclusion, this has not been done during previous outbreaks, leading to a lack of information on what works. The organization recommends sharing data, once collated, with the U.N., International Disability Alliance, and International Disability and Development Consortium to help contribute to building more inclusive responses in the future.
2. Make information accessible
Around the world, governments and aid organizations are encouraging social distancing and regular hand washing to prevent the spread of the virus. For those with a vision or hearing impairment, such messages — often distributed via broadcast media or flyers — may not be accessible. In an assessment of youth with disabilities in Manila, Philippines, 41% said they needed more accessible information about COVID-19.
“The most urgent thing to do is to ensure the risk messaging is reaching older people, people with disability, and carers where needed,” Hiscock said. The breakdown of community networks and social interaction has reduced the usual level of information sharing, she added.
In Nepal, HelpAge community volunteers have developed sign language resources and trained community-based volunteers on how to deliver them. In Nepal and India, Jean Pierre Delomier, humanitarian action director at Humanity & Inclusion, said the aid organization is sharing information in braille, translating government messages into sign language, and hosting podcasts to communicate key messages.
3. Ensure access to health services
Of particular concern is that people with disabilities are at risk of exclusion and discrimination by health care personnel, Delomier said.
Last month, the International Disability Alliance wrote to World Health Organization Director-General Tedros Adhanom Ghebreyesus to describe how people with disabilities were being turned away from medical facilities. Tedros responded by calling on governments to ensure that people with disabilities are not discriminated against in medical decision-making. This would ensure that, whether testing positive for COVID-19 or in need of medical assistance related to a different issue, all would receive adequate care.
“An example of this is what is happening in residential institutions across the world where residents are getting infected and dying at dramatic rates, not because they are persons with disabilities but because they live in these institutions,” Felix said. “The communal living settings, lack of personal protective equipment, and shortage of staff make it more likely for persons with disabilities to get infected, to be abused, and to be neglected.”
In Romania, 242 residents of a psychiatric institution contracted the virus and were reportedly refused hospital access.
Advocates say the necessary work must now happen to turn the guidelines into action.
To remedy this, Felix suggested that, while volunteers are currently helping to fill the gap, there needs to be more funding available to enable community-based care so that persons with disabilities can still access the services they need without having to visit a health center.
There should also be more of a focus on providing psychosocial support at a local level to help reduce fear and stigma, Hiscock said. Increased understanding of disabilities could lead to less discrimination, and thus prevent the refusal of treatment.
4. Ensure access to regular services
“It is critical [that] regular services are not disturbed in any form or way,” said Dr. Muhammad Babar Qureshi, director of inclusive eye health and neglected tropical diseases at Christian development organization CBM International. Such services could include visits from support staff for personal care, speech therapy sessions, or physiotherapy instruction.
But the services must be delivered in a way that protects both staff members and people with disabilities, explained Ben Clare, disability consultant with the Asia and Pacific-focused project management company Scope Global. This could mean wearing personal protective equipment, maintaining a safe distance if possible, or increasing hygiene practices.
But in the Pacific region, Clare said health and care professionals remain concerned about how to protect themselves and those they’re working with when they are not being given access to protective equipment.
This is where telemedicine could play a role, especially in places where travel restrictions prohibit direct contact. Humanity & Inclusion is using telehealth platforms to connect individuals to physical therapists, while Smile Train has produced online educational materials for new parents of children with a cleft lip and palate who are unable to have surgery at this time. It is also hosting virtual workshops and offering virtual consultations with speech therapists.
And beyond providing regular services, Qureshi urged organizations to ensure they are also working to mitigate any psychosocial consequences of the pandemic among people with disabilities, who may be even more isolated at this time.
Visit our dedicated COVID-19 page for news, job opportunities, and funding insights.