Jamie Hale is a writer and disability activist currently interning with Muscular Dystrophy UK's Policy and Parliamentary team as part of our Moving Up project. He blogs about the life changing experience of employing his own carers.
When I began to need personal care, I was a young adult living away from home at University. This meant that from the outset, I wasn’t relying on my parents to provide my care – meaning I could have an independent identity away from family. When I went home for the summer holiday, my parents didn’t quite understand why I wanted strangers coming in to help me shower – couldn’t they help instead? I found it hard to explain why I preferred to get that help from a stranger, but it was about nebulous ideas of independence and adulthood.
Hiring my own carers was the best decision I ever made. I call them PAs (personal assistants) rather than carers, and they do everything from helping me with catheter care to helping me wash, dress, make food, go out, and live an independent adulthood. This has allowed me to define my own life and take advantage of all the opportunities offered to me – including the Moving Up internship with Muscular Dystrophy UK.
If you’re living at home, and your parents get carer’s allowance for looking after you, you might be worried about them losing that source of income. If they are still doing some of your care then they might still qualify, and if they aren’t, then you might qualify for more money on your ESA instead – so it doesn’t necessarily mean losing money. While some people have to pay from their benefits towards their care, this isn’t always a big loss of money, and is, in my experience, worth it. If your needs are primarily about managing a health condition, then you might qualify for free NHS funded care.
It’s natural for your parents to want to be protective, and they might be very uncertain about trusting anyone else to do your care. If the current situation works for you and them, it might feel like there’s no point in changing it. In my experience though, if you want to be your own adult, and move towards living alone or with friends/partners, and having a career, then it relies on you making your own decisions about your life – which is hard to do when your parents provide your care
As a young adult, it’s important to have the space to be rebellious. As a disabled person, dependent on my parents to help me into the house and into and out of my chair, I couldn’t go out late to a house party, coming in drunk at 3am. With PAs it’s their job to tumble me into bed, and get me paracetamol for the hangover in the morning. If I want to make a bad decision, then I should be able to – just like someone who isn’t disabled. If I have a PA around, I can go out whenever I want, whereas if I was reliant on my parents, it would only be possible when they weren’t busy. This freedom is central to becoming an adult – learning your own boundaries – and it’s hard to do when your parents are also your carers.
Even if you’re uncertain about your degree, going to Uni gives you a supportive laboratory for testing out adult life. If you choose a University near home, then if there’s a problem you know your parents are within reach. While I was at University, I was able to work out what care I needed, and how I wanted to get it. I tried using care agencies while at Uni, but discovered I was happier employing people directly, through a program of direct payments. This program gives you the money, and then you employ and manage people – so I employed other students and trained them in what I needed. While a traditional care agency would have you in bed at 10, if I wanted a night out I could organise a PA to get me into bed at any time, which gave me a lot more freedom. It was a lot of work, but it was definitely worth it.
When I was seriously ill after graduation, I was very uncertain about moving out and into London. I love my parents, I liked the set-up inside their bungalow, and I liked the town they lived in. The idea of moving out into the big wide world was terrifying. I’m so glad I did it. If I hadn’t had the experience of employing my own PAs at Uni, I wouldn’t have braved this step into adult life, but because I was already used to employing and managing people, I felt able to take the opportunity to do this. Now I live in a gorgeous flat with my greyhound, and employ my own PAs, which gives me complete independence. I haven’t been allocated as many care hours as I need, but overall living on my own has worked well for me.
If you’re interested in learning more about social care and what you might want and need, an assessment free – just google your Local Authority, get in touch, and ask for a care assessment. They’ll come out to your house and help work out how many care hours you qualify for, whether you’ll have to contribute from your benefits, and if so how much you’ll have to pay. The assessment doesn’t commit you to anything, but lets you explore other ways of managing your care. I recommend you try it.
If you're interested in taking part in the Moving Up project please email movingup@musculardystrophyuk.org. If you'd like to find out more about employing a PA please call our advice line on 0800 652 6352.