Disabled people and their families shouldn’t be an afterthought in the Covid inquiry

Nicola lives in West Yorkshire and is a full-time carer for her 20-year-old daughter, Rebecca who is deaf and has autism.  She explains the impact that lockdown had on her and Rebecca.

Despite being one of the hardest-hit groups, it really feels like disabled people and their families have been sidelined throughout the pandemic. It just doesn’t feel like our needs have been considered.  

As a full-time carer for my daughter, Rebecca, this past year’s been really challenging. Rebecca usually goes to a college five days a week, but she wasn’t allowed to attend when lockdown hit last year and it really had a huge impact on us both.

We were also told that Rebecca had to shield. This meant we were both suddenly completely cut off from our local community.  

The government didn’t plan for disabled families during lockdown

Lockdown had a huge impact on Rebecca. She’s a very sociable person and not seeing anyone else or her friends at college really affected her mental health. 

When things started going back to normal, many disabled people, including Rebecca continued to be left behind. It really felt like her education was deprioritised.  

There was no plan for what families like mine should do. We were left to make very hard decisions on our own without clear guidance or information from the government, and to cope with the consequences.  

I really had to fight for Rebecca to go back to college. I was so worried that being so isolated was having a long term impact on her development. But I also had to weigh this up with the risk of her catching Covid-19. 

Thankfully, Rebecca’s now back at college, but I know some disabled children and young adults still aren’t back at school 18 months later.  

Caring for Rebecca on my own has been overwhelming. Being an unpaid carer, it often feels like you’re completely left behind.

A year of not getting the usual support and working 24 hour days has been very very lonely. People see your struggle, but they don’t fully understand, and this makes it hard to connect with others. 

Disabled people’s voices must be heard in the Covid inquiry 

The situation must improve for other disabled people and their families. 

A public inquiry into Covid-19 feels like a real opportunity to look at what’s happened over the past year and improve support for disabled people and their families. But if we want real change, the inquiry needs to be delivered in the right way.

Disabled people and their families must be engaged and consulted with from the start and not left behind again.

There needs to be a specific focus on the challenges disabled people have faced during this time. And the information and findings from the inquiry should be shared in an accessible way.

We can’t continue to be ignored as we have been for so long. Disabled people and their families shouldn’t be an afterthought. We’re not going anywhere and our stories must be heard.