Call on Governments to ensure that PwD are not left behind in COVID-19 Vaccinations9 min read

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The COVID-19 pandemic is a global health emergency that demands a global response. Viruses do not respect borders. A well-coordinated global approach to the development and distribution of COVID-19 vaccines based on the solidarity of all nations and peoples is the most effective, sustainable, and moral response to the crisis the world is facing. Unfair distribution of vaccines undermines the achievement of the Sustainable Development Goals (SDGs).

Globally, more than 1 billion people – roughly 15 percent of the world’s population live with some form of disability, they may be at particular risk of serious illness or death from COVID-19 infection.

Although the ongoing crisis is unprecedented, respect for international human rights standards must be at the heart of state responses to it. In this connection, it is important to remember that Article 11 of the UN Convention on the Rights of Persons with Disabilities (CRPD), provides that states shall take “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters”.

Without a global, coordinated effort to ensure access to a vaccine for everyone who needs it, we risk priority access being granted on the basis of ability to pay and other grounds including nationality and country of residence, rather than on an evidence-based assessment of need, affordable, non-discriminatory access to the vaccine is a human right. Ensuring access to the vaccine is not only the right thing to do but also in the interest of us all, for unless everyone is safe, no one is safe. Fair distribution of vaccines that respects the human rights of all is also essential to build trust. While recent advances underscore the urgency of respecting human rights in relation to the development and distribution of a COVID-19 vaccine, the norms outlined in these messages apply universally to access to medicines, other vaccines, health therapies and health technologies and should guide States and other stakeholders in policy development and implementation.

Doctor hands in safety gloves preparing syringe for coronavirus vaccine injection
Doctor hands in safety gloves preparing syringe for coronavirus vaccine injection

COVID-19 presents particular risks for many people with disabilities around the world. They face an increased risk of contracting COVID-19 due to existing health conditions and inequities in underlying and social determinants of health and contact with support service providers.

Focused efforts are essential to remove barriers, pre-empt potential discrimination, and monitor distribution to ensure equality and avoid discrimination. These efforts are not only essential to protect human rights, but to ensure the effectiveness of the vaccination campaign. Vaccination distribution plans need to ensure full accessibility for persons with disabilities. Prioritisation of vaccine delivery should be done through transparent protocols and procedures that respect human rights.

A critical issue today involves the protocols according to which vaccines will be distributed, including prioritisation of groups for access to the vaccine. Those complex criteria have been elaborated in detail through the World Health Organisation-Strategic Advisory Group of Experts on Immunization  WHO SAGE values framework for the allocation and prioritisation of COVID-19 vaccination.

The decision as to who should receive priority consideration for the vaccine should be based on appropriate criteria that are in line with human rights standards and norms.


COVID-19 VACCINES SHOULD BE AFFORDABLE AND ACCESSIBLE TO ALL

It is imperative that access to vaccines and treatment is provided to all without discrimination and prioritized for those who are most exposed and vulnerable to the risk of COVID-19.

Persons with disabilities are experiencing exclusion, discrimination, and neglect during the response to the pandemic. We do not want this to be the case in the dissemination of COVID-19 vaccinations.

Accordingly, we urge governments to make additional efforts to protect the rights of people with disabilities in responding to the epidemic and accessing vaccinations and must commit to ensuring that any COVID-19 vaccines are available, and treatments are safe, accessible, and affordable to all who need them.

Civil society and communities should be able to participate meaningfully in the development of vaccine distribution protocols and in policies concerning prioritisation of allocations. Particular care should be taken to ensure that those who are often invisible in many ways, including people in institutional settings such as care homes, psychiatric institutions, homes for persons with disabilities, homeless shelters, immigration detention centers, and prisons, are included without discrimination in vaccine distribution policies and plans.

Dollar, euro and polish zloty money background
Dollar, euro and polish zloty money background

The International Disability Alliance (IDA) called on all policy-makers and health-care planners in every region and in every country to include persons with disabilities and support networks of their choice in priority groups to receive vaccinations, and to make sure that all persons with disabilities can access vaccinations on the basis of accessible and understandable information, through informed consent, and to take all necessary measures to ensure that governments comply with their obligations to persons with disabilities with regard to priority access to COVID-19 vaccinations and related information and processes.

According to an analysis from FAIR Health and Johns Hopkins University, people with certain disabilities or chronic medical conditions have a higher rate of infection and recent studies have shown that people with disabilities are three times more likely to die of COVID than the general population.

REDUCE INEQUALITY: VACCINATION FOR PEOPLE WITH DISABILITIES AND PRIORITIES

The benefits of vaccination could be greatest for people with disabilities and those with more significant challenges.

Disability is an emerging field within public health; people with significant disabilities account for more than 12% of the US population.

Disparity status for this group would allow federal and state governments to actively work to reduce inequities.  

Families in the United States (US) are fighting to gain the attention of state officials and advocates to ensure their loved ones are at the front of the vaccine line.

Lots of questions continue about whether the vaccines will be allocated in a way that does not discriminate against people with disabilities, and how affordable they will be.

At the request of the Centers for Disease Control and Prevention (CDC), in September 2020 the National Academies of Science, Engineering and Medicine issued a preliminary framework for the distribution of a COVID-19 vaccine. The framework prioritizes essential and front-line health care workers, as well as people living in group homes and other congregate settings.

Echoing concerns earlier in the COVID-19 pandemic about ventilator rationing, disability advocates have pointed out the absence of any express mention of people with developmental disabilities, who they fear will receive lower priority based on outdated assumptions and stereotypes about their ability to survive COVID-19.

In a September 9 letter to the Office of Civil Rights in the Department of Health and Human Services, the Consortium for Citizens with Disabilities (CCD) implored the Department to ensure that the distribution of any COVID-19 vaccine complies with federal anti-discrimination laws.

“Disability status and age should not be used to deny or deprioritize people for a vaccine, such as categorically excluding people with certain disabilities or functional impairments or prioritizing people based on projections of long-term survivability,” the CCD wrote.

Baby girl wearing a hearing aid. Disabled child, disability and deafness concept
Baby girl wearing a hearing aid. Disabled child, disabilityt

The CDC indicated that health care personnel and residents of long-term care facilities should be ranked first in Phase 1a.

Disability advocates say guidance should be interpreted to include all people with disabilities who receive long-term care, whether in large institutions, smaller group homes.

But as guidance from the federal government has been translated into vaccine distribution plans made by states, those with disabilities have been downgraded to lower priority status.

The lack of consistency is the result of a lack of guidance from the CDC. Other than acknowledging those with Down syndrome should be prioritized along with people with high-risk medical conditions, federal recommendations for vaccine rollout make no explicit mention of any other disabilities.

The lack of specificity in the federal guidance language has left many in the community wondering if they are at higher risk from COVID-19.

WHEN WILL PEOPLE WITH DISABILITIES GET THE CORONAVIRUS VACCINE?

Prioritizing people with disabilities for vaccine access is the right thing to do for people with disabilities, for those who love them, and for our communities.

Californians with disabilities, for example, are worried they will be overlooked in the state’s vaccine distribution plan, after an announcement from Gov. Gavin Newsom that priority will now be determined primarily by a person’s age.

More than 700 disability rights advocates gathered at a virtual town hall meeting to voice their concerns about the change.

“I was sure based on the news reports that people with disabilities would be toward the front of the line to receive the vaccine,” said Tim Jin, a 45-year-old living with cerebral palsy. “[Newsom’s] plan gives priority to people based on their job and age, but so far has neglected to account for the needs of Californians with disabilities. Why would a healthy 50-something get the vaccine before me?”.

Persons with disabilities must be prioritized in accessing COVID-19 vaccinations. Unless specifically prioritized, persons with disabilities in practice will be among the last groups accessing vaccination, due to attitudinal and environmental barriers, persons with disabilities are often among the last groups who can access highly demanded public services, in particular in situations of risk and emergency. Because vaccine demand would exceed supply in the first years, without prioritization, persons with disabilities will be disproportionately excluded.

Therefore, support networks of persons with disabilities need to be prioritized in accessing vaccines.

Finally: Read more about ADA report and recommendations: Reach the furthest behind first: Persons with disabilities must be prioritized in accessing COVID-19 vaccinations.

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About the Authors

Debra Ruh

Debra Ruh

CEO and Founder of Ruh Global IMPACT, Human Potential at Work (HPAW) Talk Show Host and Co-Host of AXSChat

Debra Ruh is the CEO of Ruh Global IMPACT. The UN President’s office invited Debra to address the United Nations General Assembly at the Conference of State Parties 9th session on May 13, 2016. Selected as the North American representative for UN ILO Global Business and Disability Network (GBDN). US State Department global speaker and ambassador since 2018. Nominated as Global Goodwill Ambassador in 2018. Author of three books, Inclusion Branding (available in English, Spanish, Arabic, and Voice via Audible), Tapping into Hidden Human Capital, and Finding Your Voice using Social Media. Learn more at www.RuhGlobal.com or https://tiny.cc/DebraRuh.

Nabil Eid

Nabil Eid

Director of Global ICT Accessibility and Inclusion, Ruh Global IMPACT 

His role as the CIO is to help set and lead the ICT accessibility strategy for Ruh Global IMPACT. Nabil has held several positions and worked with numerous NGOs, civil society networks, UN agencies, governments, private sector, and grassroots organizations to successfully create positive change at global, regional, and national levels.

With 20+ years of experience in disability inclusion strategies and ICT4D marginalized communities. Providing counseling, research, evaluation & monitoring, and ICT accessibility solutions and assistive technology services. Author of 8 books about disability inclusion and ICT accessibility

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