Greater priority access to COVID-19 vaccine for people with intellectual disabilities necessary, say experts

Intellectual disability comes after old age as a risk factor for COVID-19 death and yet worldwide people living with intellectual disabilities and disorders are not getting due priority when it comes to the vaccine. Given that the pandemic has only heightened the existing structural barriers that people with IDDs face, experts are urging for vaccine programmes to be made more accessible for people in this group.

Consider this:

• People living with intellectual disabilities and disorders (PwIDDs) are nearly six times more likely to die from COVID-19.
• Chances of dying from COVID-19 are higher for those with intellectual disability than they are for people with congestive heart failure, kidney disease or lung disease.
• PwIDDs are also 2.5 times more likely to contract COVID-19.
• People with Down syndrome face four times higher risk of COVID-19– related hospitalisation and a 10-fold increased risk for COVID-19–related death.

There are compelling reasons why vaccination for PwIDDs must be prioritised. Yet the world over, including in developed countries, priority access to the COVID-19 vaccine, continues to be a challenge. There’s a critical need to design a system to reach out to this highly vulnerable group.

“PwIDDs often have multiple disabilities and are at a higher risk due to compounded co-morbidities like diabetes, hypertension, obesity that are associated with IDD”, explains Archana Chandra, CEO, Jai Vakeel Foundation, a Mumbai-based not for profit that has reached out to thousands of children with intellectual disabilities from poor families for over 75 years. “The presence of these makes them further vulnerable and increases their mortality rate when they contact the virus. The higher rate of co-morbidities is due to lack of exercise, access to fewer social activities and challenging food habits”.

Add to this are certain behavioural issues, which make it a barrier to managing their health concerns.

Pandemic heightens existing barriers

A study published in March this year in the New England Journal of Medicine (NEJM) Catalyst puts intellectual disability second only to older age as a risk factor for dying from COVID-19. The authors examined 64 million patient records from 547 healthcare organisations in the United States between January 2019 to November 2020 to understand the impact of the COVID-19 pandemic on patients with intellectual disabilities. Yet there is little understanding of the critical need to prioritise these patients and their caregivers for vaccination.

Even prior to the pandemic PwIDDs and their caregivers have faced structural barriers when it comes to accessing health care. This has worsened in the current scenario, points out Sam Crane, Legal Director of the Autistic Self Advocacy Network, a Washington D.C.- based non-profit advocacy run for and by people on the autism spectrum.

“The pandemic has absolutely exacerbated disparities in access to health care for PwIDDs. Although tele-health is preferred by some people in our community, it can be difficult for others with IDD to access. People have also had much more difficulty accessing long-term services and supports and moving out of large institutional settings. Hospitals and other health care providers have instituted restrictions on bringing supporters into medical settings, which often make it much harder for people with IDD to bring the necessary support they need to access health care. And we have even seen rationing policies in which hospitals, in an attempt to create guidelines for prioritising scarce health care resources, will explicitly or implicitly de-prioritise care to people with significant IDD”.

Neglect of PwIDDs on multiple fronts

In the United States, the National Vaccine Advisory Committee has made recommendations for vaccine prioritisation. However for the most part, states have been allowed to make their own plans for vaccination. Many states are choosing to only prioritise people in the Centres for Disease Control and Prevention (CDC)’s list of high risk co-morbidities. The list, however, does not mention IDD specifically. And while some states are reaching out to people in large settings like nursing homes, those in smaller set ups are getting left out. People on the priority category face multiple challenges as well.

“People with IDD can’t necessarily drive to a mass vaccination site or wait for several hours in a car in order to get a vaccine”, says Crane. “Navigating complex registration processes can be inaccessible, especially when there are multiple separate places to register, when registration requires literacy or requires us to be on the computer at a specific time, or when registration requires people to navigate a registration form extremely quickly before all slots are taken. These barriers can be particularly problematic for people with IDD who lack reliable internet access and who are in areas with low overall access to vaccine – such as many communities of colour”.

In the United Kingdom, the government has been slammed for failing to prioritise people with learning disabilities. This is even after a Public Health England study last year revealed the death rate for people aged 18 to 34 with learning disabilities was up to six times the rate of the general population. Following the uproar from disability rights groups the Joint Committee on Vaccination and Immunisation made some changes, termed “modest” by many groups.

In a press statement, Dan Scorer, Head of Policy, Mencap, the UK charity that works to support people with learning disabilities.said “The question must be asked whether this is enough to address the shocking rate of deaths amongst people with a learning disability, who already faced serious health inequalities before COVID. The pandemic has exacerbated these inequalities and they can no longer be ignored, too many people have already died.”

In India too, PwIDDs have been omitted from the guidelines. In the second phase of the vaccination drive the Ministry of Health and Family Welfare announced that citizens above 60 and those above 45 with co-morbidities, of which intellectual disability is one, would be covered. Disability rights groups have objected to terming disability as a co-morbidity.

The omission of most individuals with IDD from the guidelines is a cross-cutting issue. Not only is it a health concern but also serves as a determinant to access educational and other livelihood opportunities. Research suggests that PwIDDs find it challenging to adhere to social distancing norms. Thus, it is critical to prioritise this group for vaccination. – Archana Chandra, CEO, Jai Vakeel Foundation

Chandra hopes that the next phase will see the inclusion of all PwIDDs above the age of 16, with or without associated co-morbidities.

Moral failure

“We require various stakeholders to come together in solidarity”, she adds. The task cannot solely lie with the policy makers. Citizens, advocacy groups, civil society organisations should amplify the voices from the ground, share unique challenges of PwIDDs and propose viable solutions that will ensure maximising prioritisation, inclusion, and accessibility of persons with disabilities in the rollout and distribution of COVID-19 vaccinations. We must remain committed to creating a world where certain segments of population are not disproportionately impacted by a global pandemic”.

Caring for those who have the greatest need is the moral responsibility of the government. The evidence is clear that PwIDDs are bearing the brunt of the pandemic and how the vaccine allocation is done speaks immensely about the extent to which we value the lives of people with IDDs.

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