Since lockdown began, autistic and learning disabled people like my sister Raana have been cast aside

We have known for years that people with learning disabilities die earlier than they should because they fail to get the same healthcare as everyone else

The news that huge numbers of learning disabled or autistic people are dying from coronavirus proves how the lives of individuals like my sister Raana have been overlooked.

It is shameful that there has been a 134 per cent increase in the deaths among this section of our population compared to the same period last year. According to the Care Quality Commission, which published the figures, of the 386 people who died in the five weeks to 15 May, 206 had confirmed or suspected coronavirus.

The devastating truth is that for learning disabled or autistic people and their families, the figures are no surprise. It is what we feared, but hoped would not happen. This is because, since lockdown began, people like my sister have effectively been cast aside.

There has been no acknowledgement of how social isolation and changes in routine or staff affect people. My sister, who relies on a familiar schedule and family contact, has struggled. Meanwhile, learning disabled people and their care staff have had little access to personal protective equipment and have been bypassed by the testing regime.

The government dragged its heels in responding to the Covid-19 impact in care homes, and even when it woke up to the crisis, its focus was solely on older people. This short-sighted response ignored the risks to younger people like Raana who also rely on social care.

This disregard is reflected in the fact it is now three months since lockdown began – and only now are we scratching the surface in terms of these deaths.

Today’s figures reflect a wider problem: the longstanding inequalities faced by autistic and learning disabled people, compounded by years of austerity and welfare reform.

As Matthew Hellett, a learning disabled self-advocate from Brighton, says, this is part of a bigger picture. “Why is this still going on? It makes me angry and sad that in 2020 people are being forgotten about. People have the right to live their life without harm.”

We have known for years that people with learning disabilities die earlier than they should because they fail to get the same healthcare as everyone else. A government-commissioned confidential inquiry into such premature deaths in 2013 found that, on average, people within this group die 16 years sooner than in the general population, with many deaths avoidable. This is just one study among many over the last few decades into what should be treated as a national scandal.

It is also nine years since BBC’s Panorama exposed the abuse of people at the privately-run, NHS-funded Winterbourne View unit in South Gloucestershire. Since then, there’s been much talk but little progress in improving the care of learning disabled people. More than 2,000 are still languishing in units like Winterbourne.

Kevin Marriott’s brother Nigel, who needed 24-hour support, died from Covid-19, two weeks before his 61st birthday. Marriott says: “Nigel isn’t with us any longer, but that deep-rooted unfairness still is. We’re talking about a forgotten group of people and coronavirus makes that worse. We need an independent inquiry to look at this lack of fairness towards people with learning disabilities.”

Marriott is right. Our fellow humans die sooner and in greater numbers than they should. What should we do?

That question is one that the government has failed to properly address for too long. People like my sister have always been treated as second-class citizens before Covid-19; the pandemic and the inadequate response to it is making them into third-class citizens. We can and must do better.

Saba Salman is the editor of Made Possible: stories of success by people with learning disabilities – in their own words. Published by Unbound