Becoming an adult can be exciting – a chance for new experiences and independence. But for many disabled young people, there can be uncertainty about what the future holds when it comes to transitioning from children to adult services, independent living, employment and healthcare.
From my experience, early planning is essential to ensure less disruption. Yes, there’s lots of admin involved but there are things you can do to ensure a smooth transition. I asked Frances Ryan, journalist and author of Who Wants Normal? The Disabled Girls’ Guide To Life, her thoughts: “Once you leave school, there’s a real gap in support or even basic information about how to go to university, work or move out of home,” says Frances.
“I had a really fortunate childhood: a loving family and a supportive school,” she says. “But anyone growing up with a disability knows that you have to navigate extra things not just to hit the same targets as your non-disabled peers, but even to access the same opportunities.”
Who Wants Normal? is a brilliant resource for young people, their families and supporters about what it’s like to become an adult when you have a disability, covering everything from education and employment to body image and relationships.
“The default is that you’ll rely on your parents but, of course, you want to be independent like everyone else,” says Frances. “That’s in many ways why I wrote the book. Growing up, I’d never seen other disabled people who looked like me forging their own way. I didn’t know it was possible, and I certainly didn’t know any of the tools or adjustments that would make it easier.”
Education and work
One of the first things to arrange is an Education, Health and Care Plan (EHCP), which should be regularly reviewed while a child is still at school. Plans for the transition to adulthood can be discussed as early as year 9. For those who want to continue their education, colleges and universities often have dedicated teams supporting disabled students.
Speaking from my own experience, being visually impaired and having a mental health condition, I was nervous about going to university. My mum contacted the disability support team a year beforehand to ask what was available and I also applied for Disabled Students’ Allowance (DSA). This all helped reassure me that I’d be supported while taking the big step of moving away from home, and meant things like note-taking support were set up in advance.
When you finally leave education and enter the workplace for the first time, it’s particularly important that you understand your legal rights. The Equality Act prevents discrimination by making it illegal for employers to treat people less favourably because of their disability and gives disabled people the right to ask for reasonable adjustments at work. For me, that included having specialist magnification software and being able to take short breaks.
Access to Work funding can help put adjustments in place. It can also be worth speaking to a specialist careers advisor for guidance on understanding adjustments and finding a job.
Frances shares advice from her experiences, too. “Whether it’s asking your boss for flexible working or a cab driver to get the taxi ramp out, one of the best things you can do as you grow up is get comfortable with asking for what you need,” she says. “Advocating for yourself takes practice each time you speak up for what you need to access the world, it'll feel easier next time. And you deserve nothing less.”
Managing money
A big change for many young disabled people is becoming responsible for managing your money and benefits. For adults who aren’t able to do this alone, you can apply through the Department of Work and Pensions for someone to be an appointee.
Under the Care Act, you can ask for a transition assessment from the local authority to consider what social care support you’ll need, so this is ready for when you become an adult. With healthcare, ask any teams who support you about transition plans, and whether becoming an adult will change which professionals you see.
Supporting a young person
A big way parents and carers can support is by helping young people navigate the different processes. Filling in forms or making phone calls can be daunting and overwhelming, and it can be difficult to keep track of everything.
When I was in my teens, my mum made a list of all the different people we needed to contact. While she took the lead, she encouraged me to be involved. This meant that when I moved away from home, I had the confidence and knowledge to start navigating more systems by myself, from speaking to disability support at university to making medical appointments.
Ensuring the young person feels included is key. Their feelings and ideas should be at the heart of transition planning. Taking notes in any meetings or phone calls, and writing down any important dates or information can help make the process more manageable.
Change can feel difficult. It’s normal for the young person and their family to feel anxious or uncertain, but there's a lot of help available that could make the transition to adulthood not just easier, but an exciting time.
Frances says: “Growing up with a disability, you’ll come across plenty of fixed ideas and low expectations about what your life will look like. I say: ignore everyone.
“The media often frames disability as miserable or tragic, and at the same time excludes disabled voices who could offer an accurate point of view. I think those cultural messages are hard at any age, but particularly when you're starting out in life.
“I wanted to create an alternative narrative, to help readers discover that you are not alone. How you look, move and talk is not this shameful oddity but something millions of others share and is a bit gorgeous, actually. If Who Wants Normal? can help someone feel a little better on a hard day, I'll be very happy.”
Who Wants Normal? The Disabled Girls’ Guide to Life, by Frances Ryan, is out now. The audiobook, read by Ruth Madeley, is also available.
Photos: Mark Swallow, Olga Smolina, FG Trade, Alphotographic/Getty Images; Reshetnikov_art/Shutterstock.
