Disclaimer: AccessAble kindly commissioned this piece for Young Carers Awareness Day. Views are my own or of the individuals quoted throughout.
According to renowned youth mental health charity YoungMinds, there are an estimated 700,000 young carers in the UK today, however, that figure is only based on those that are known to outreach services. The actual figure could be considerably higher as many young people caring for an ill/disabled loved one slip through the net, don’t access support and therefore go under the radar.
What’s the definition of a ‘Young Carer’?
A young carer is defined as somebody under 18 years old who helps to look after a sick, mentally ill, disabled or elderly relative or those with a drug/alcohol dependency.
They take on the role and responsibilities not typical of the average child/teenager and may not even realise they are a carer as what they do is normal to them. Some young carers have been such from a very young age, whereas others have their role changed pretty much overnight, all dependant on the circumstances surrounding their loved one who needs help.
Young Carers have rights and are supported by various amazing youth charities, can access a wide array of support e.g. going to a specialist young carers centre to speak with other children/young people who are carers also, enjoy leisure activities to help them regain some of what they may have lost and support is put in place to relieve the young person of their duties by having the relatives needs met by the appropriate services.
However, more awareness is needed to understand what’s happening within the systems meant to protect children and vulnerable adults from getting to the point the child in the home is doing personal care for their parent, helping supervise a disabled sibling, giving medication including controlled drugs, going straight to grandma’s house after school to empty a commode and give them their evening meal and trying to balance the upkeep of the home with ever-mounting school work in preparation for their SATS, GCSE’s or long-term career goals.
Hearing the Voices of Young Carers
For Young Carers Awareness Day, I wanted to document the thoughts and feelings of some of the young carers in our community looking after a sick or disabled relative to gauge what struggles they face and what we can do as a society to make things easier.
Meet April and Fraser
I spoke to 9-year-old April from Essex who is a young carer to her little brother Fraser (6). Fraser was diagnosed with Duchenne Muscular Dystrophy at 11 months old, a life-limiting muscle-wasting condition that means he uses a powered wheelchair and needs support in activities of daily life. Here’s what April had to say.
“It’s great being my brother’s helper because it makes him happy. I help my brother use the toilet and climb the stairs. It makes me feel good when I help people.
I feel it’s not fair when I get invited to birthday parties, days out like to amusement parks or the zoo and it’s not accessible for him. People in wheelchairs should be allowed to go out just the same as everyone else. When Fraser can’t get in somewhere then we don’t go there, I miss out too. If I could I’d make everywhere accessible!
Having an App young carers can use to see if a place has the right access for who we help would be brilliant! We’d get to go to more places together.”
Gabriel is 15-year-old and lives in Glasgow. Gabe was a young carer to big sister Ruby (18) who was born with Sanfilippo Syndrome – a rare lysosomal storage disease that affects the brain and spinal cord. Ruby sadly passed away last year.
Our conversations surrounding accessibility in our campaigning roles shed light on an area that I’ve never come across before about centres for Young Carers that really opened my eyes. Gabe says;
“I learnt how to manage Ruby’s feeds, make her comfortable in her wheelchair, give medication and advocate for my big sister because she didn’t have a voice. My parents never sugar-coated Ruby’s prognosis with me and I’m glad because it meant I understood how important it was to spend time together as a family. The children’s hospice Ruby went to were amazing and cared for us all as much as they did my big sis. They were the ones that referred me to get support from my local Young Carers centre.
Though when I visited, we were met by a big step we couldn’t get Ruby’s wheelchair over. I ended up going in alone and I didn’t like that access wasn’t thought about. I stopped going shortly after because lack of access meant my family couldn’t come see what activities/performances we’d been doing etc as leaving my sister behind wasn’t an option. Whereas when we’d go swimming, cinema or shopping etc we did those activities together. If Ruby couldn’t do it, neither did we. We’d take that stance as a family unit to challenge lack of accessibility. Sure it was a right pain locating new places with wheelchair access, but once we found websites Euan’s Guide and AccessAble the world started opening up for us all! Society need to realise that access isn’t just needed for disabled people themselves, disability affects the whole family.”
Speaking with April and Gabriel it’s evident that we need to be making accessibility information readily available for young people who have a disabled family member, not just disabled people themselves and giving them the resources in a format that’s appealing to young people of this generation such as an App. Families should be able to go out together and nobody misses out due to additional access needs, without phoning around 30 different places and gaining the ‘opinion’ of whoever picks up the phone whether it’s accessible to the person at the other, end who they have zero knowledge of.
Introducing the AccessAble App
The AccessAble App is clear and simple to operate with a specific filter feature to search for venues, businesses, restaurants and public spaces so you can look for places to go that have the accessibility features your loved one needs. All Access Guides presented on the easy-to-use App are put together by a surveyor who is highly trained in accessibility, taking the matter of opinion and guesswork. You know when you use AccessAble that the information is factual and current, giving its users the peace of mind other search methods can’t guarantee.
I’d love to see the world opened up for young carers and their voices valued. Its clear accessibility is as much a part of their lives as it is the people they care for.