When Margaret Keenan became the first person in the UK to receive the coronavirus vaccine last week, the nation breathed a sigh of relief. But it is crucial we do not forget those who have constantly been at the back of the queue: people with learning disabilities and autism.
Throughout the pandemic, people with learning disabilities and autism have consistently been let down. A lack of clear, easy-to-understand guidance, unequal access to care and illegal “do not resuscitate” instructions have exacerbated the inequalities many people have long faced.
The impact cannot be ignored: our research shows that 76% of people with learning disabilities feel they do not matter to the government, compared with the general public, during the pandemic. And data shows the danger of contracting Covid-19 for people with learning disabilities and autism is much higher than for the wider population.
Public Health England has said the registered Covid-19 death rate for people with learning disabilities in England is more than four times times higher than the general population. But experts estimate the true rate is likely to be even higher, since not all deaths of people with learning disabilities are registered in the databases used to collate the findings.
Even more alarming, people with a learning disability are dying from Covid-19 at a much younger age than the general population. Learning disabled 18- to 34-year-olds are 30 times more likely to die from coronavirus than their non-learning disabled counterparts. And while in the UK population as a whole, the age group at greatest risk of dying is the over-75s, for those with learning disabilities, the largest number of deaths is among 55- to 64-year-olds.
The reasons the pandemic has impacted people with learning disabilities so disproportionately are systemic, and a result of inequalities in healthcare services experienced for generations. Yes, some individuals are more clinically vulnerable, on account of the co-morbidities and complications associated with their learning disability. For many people, however, poorer outcomes after contracting the virus are due to non-clinical issues and inequalities in accessing healthcare services. This is inexcusable.
The government must prioritise vaccinations for the 1.5 million people with learning disabilities and 700,000 with autism. Putting this long-overlooked group at the top of the vaccine queue would help address the systemic health inequalities learning disabled people face.
Records kept by GPs and social care providers of learning disabled people would enable an effective and accelerated vaccine rollout.
But the government does not include all people with learning disabilities on its priority list for the vaccine. So unless they qualify on the grounds of age or an underlying health condition, learning-disabled people will be inoculated alongside the rest of the working-age population.
One of the key issues exacerbating health inequalities throughout the Covid-19 crisis has been the inadequate provision of accessible information for people with learning disabilities. Our research revealed that 97% of people with learning disabilities and autism felt the government needed to do more during the pandemic to address their specific needs.
Information about the vaccination programme must be accessible to those with learning disabilities, to ensure they understand the need to be inoculated and what to expect. This must include easy-read materials and specific resources to support decision-making for people who may lack capacity to make a decision about a vaccine, and who may struggle to tolerate an injection due to their learning disability.
This year, many people supported in care homes and supported living settings have had only limited contact with loved ones. With 93% of people with learning disabilities and autism saying they feel more isolated from society because of the pandemic, the detrimental impact of prolonged isolation among those who may not understand the reasons for it cannot be underestimated. We anticipate a long-term impact on some people’s health.
Putting people with learning disabilities near the top of the list for a Covid vaccine would allow them not only to see, but spend quality time with loved ones. For those in care settings, it would allow restrictions on visits and activities to be relaxed or lifted altogether. After all, this is a cohort of people who have already experienced limitations and injustices far greater than the general population. The pandemic should be a catalyst for change in how we as a society treat people with learning disabilities – we have an opportunity to start today.