Amy Clarke is a Digital Assistant for Mencap. In this blog she talks about how difficult life during the Covid-19 pandemic has been for people with a learning disability. She says reduced social care support, no vaccine prioritisation and increased isolation makes it feel like equality is going backwards and not forwards.
I am in shock about the number of people with a learning disability who have died from Covid-19. People with a learning disability were over six times more likely to die in the first wave and still not everyone with a learning disability is being prioritised for the vaccine.
I have a learning disability, but it’s not what many people would call ‘severe’ so people like me are expected to wait to get the vaccine with the rest of the public. This is despite LeDeR data showing that 65% of people with a learning disability who died from Covid-19 in the first wave had a mild or moderate learning disability. It just doesn’t seem right when the death rates are so high for us, and when our life expectancy is over 20 years shorter - even without a global pandemic. It’s only because I also have diabetes that I will even be included in the priority group 6.
Many people don’t understand what a learning disability is, which is a challenge. For me, it means that I can take longer to learn new things and can need support with everyday tasks, like changing bedding. We all face huge inequalities everyday of our lives, whether with jobs or social opportunities or health.
Even before coronavirus, people with a learning disability were more likely to die avoidably. Many people missed out on the healthcare they need when they needed it, and people often face discrimination. This has all become even worse in the pandemic and many people have suffered even more. We have gone backwards and not forwards.
Social care cuts have left many with no support at all
And before the crisis people with a learning disability were already seven more times likely to feel lonely than the general population. Now people’s services and social care support have been cut. Nearly nine in ten people with a learning disability have still not had all their social care support started again since the first lockdown. And even before this, years of social care cuts have left many with no support at all. That means no support to understand the guidance, which is always changing, and how to stay safe from coronavirus.
It has been a hard time for everyone, but it is even more difficult for people with a learning disability. Many have been so restricted and feel scared and anxious. I have felt sad in some ways and I get down. I look at the news and there is so much illness and it’s so bad, but I am lucky to have lots of family to support me and I can use technology to do my job as a Digital Assistant at Mencap and to stay in touch with people.
Many people with a learning disability don’t have these opportunities. I’m more insular because of Covid-19 but I can see my family, friends and work colleagues by Zoom. I worry about the people who can’t.
I prayed that I wouldn’t get Covid-19 but, when I did catch it recently, I have recovered well because my family and my neighbourhood were a godsend. My family shopped online for me and dropped it off, so they could support me from a distance.
But not everyone with a learning disability has family support and many people with a learning disability might struggle to use computers and cannot shop, socialise or access services online. Some people might also be exempt from wearing a mask if they find it distressing, but when they go out, they face abuse for not wearing one. All of this adds to the extreme anxiety people are facing.
Prioritising the Covid-19 vaccine for everyone with a learning disability would go a long way to show the Government care about people with a learning disability, and make sure we can stay safe and well.
Amy Clarke is a Digital Assistant for Mencap