Scope’s We Won’t Be Forgotten campaign is calling on MPs and Government to listen to the voices of disabled people and take action to prioritise their needs.
In this series of Real Life Stories, disabled people, parents and carers are sharing their experience of life under lockdown, and the impact it is having on their lives.
My name is Hannah. I’m 29. When I was fourteen, I had an ankle injury whilst playing netball. The nerves were damaged, which caused a rare illness called Complex Regional Pain Syndrome.
Initially I was on crutches, and then it spread from one leg to the other and I went from crutches to being in a manual wheelchair. Things got worse, and a year later I was admitted to hospital where I was almost entirely bed-bound for four years.
Life under lockdown
I was doing part-time work experience a couple of hours a week, after finishing my Association of Accounting technician exams last year. But life has got a lot more challenging since the lockdown.
I live with my parents and am a powerchair user. I need almost 24/7 care, which I was getting from four Personal Assistants (PA). But because of the virus situation, I now only have support from two PAs.
My Mum and Dad were also looking after me before the lockdown, but now they're looking after me a lot more of the time as I have less care.
Normally mum - who I call her my “second voluntary PA” - will be doing things for me while my PA is helping with something else. But now so much more is falling on mum and dad, which is quite difficult.
Complicated rules and regulations
As someone who needs Personal Assistants, I oversee the procedures with making sure my PAs are paid for the hours they’ve done each month. There’s a lot of paperwork to try and sort around the Coronavirus.
Understanding the situation, what people are entitled to, and what I should be doing for the personal assistants I have can be confusing.
There are new rules and regulations around the Coronavirus and there are a lot of challenges understanding how it affects me and what my responsibilities are.
The information out there isn’t that clear, and I feel like I’ve had situations that don’t apply to ‘box A’ or ‘box B’ on the forms. And there isn’t a ‘box C’ for the situation I’m facing, so what do I do?
How am I supposed to provide Personal Protective Equipment?
I’ve been told if I got Coronavirus or symptoms, my PAs could continue to look after me, but only if I provide them the correct Personal Protective Equipment (PPE).
But hang on a minute! The NHS can’t even get the correct PPE, so how am I supposed to suddenly manage to produce it?
There isn’t really much support. If the NHS don’t have enough equipment and they’re struggling, how are individual disabled people supposed to manage?
As an employer of Personal Assistants, I’d have to provide them with an apron, a mask, maybe a visor - there was a list of things I was told I’d have to provide if got sick. But how do I actually get them?
And how do I pay for this too? With Direct Payments, I could use some of my personal budget to buy PPE if it was a reasonable cost. But what is a reasonable cost? Right now, because of the demand, things like a tiny bottle of alcohol gel is not a reasonable cost, it’s like £20!
Equipment is unavailable or overpriced, and right now there are people basically trying to make money out of a worldwide crisis.
Advice from disabled friends online
As a member of Scope’s Online Community, it’s been really helpful to hear from other disabled people what’s happening in their councils. Whilst it varies, it’s useful to know what’s happening in other areas, because there might be something similar happening in my area.
I’m pleased to have that community of friends online at a time like this. Having that knowledge and support is invaluable. And whilst it’s quite a big group, it’s more private and comfortable than other online channels.
It’s quite a close-knit community and very supportive, especially with people being in a similar situation.
At a time like this, it’s definitely somewhere I can go and say something like, “I don’t know what to do in this situation, what do you think?” or, “has anyone got any suggestions about this?”, and I’m also really active there in sharing my personal experiences, and offering my own advice and support to others going through a similar situation.
I also find giving advice and writing posts in the Online Community really rewarding - it’s connecting with others. It’s not only feeling like I’m making a difference to other disabled people, but also it’s helpful to me.
I think it’s really important Scope’s Online Community remains free, online and available. It enables disabled people to connect with others and have that support, especially when we’re often faced with quite challenging situations, like the one we’re all in now.
Join Scope's Online Community, a vibrant and supportive space to get advice and information, and talk to people with similar experiences.