‘WHEN YOUR CHILD HAS DISABILITIES YOU HAVE TO FIGHT FOR EVERY SINGLE THING’
AS their beloved twin boys were growing up, Anthony and Claire Evans started to see the differences between them. Not in the foods and toys they liked, or what they wanted to watch on TV, but in the opportunities they had.
Owain, able-bodied, was able to experience the usual things one might expect for a child, appropriate schooling, the opportunity to choose academic subjects, the chance to go swimming or do whatever activities he wanted to.
Arwel, who has profound and multiple learning disabilities and uses a power chair, had none of those things. His first school was chosen for him by people who didn’t know him. Access to the therapies and equipment he required wasn’t always available. Everything he needed to help him get through life was hard-won and there were to be more battles as he grew older. This week his father Anthony, 52, has been shortlisted for a St David Award, given to a citizen who has achieved something exceptional or made a significant contribution to their country.
For Anthony and his family it’s the result of 18 months of fighting, lobbying Welsh Assembly members for funding simply so that Arwel could have the opportunity to go to college, to expand his speech and language skills, to learn to cook and become more independent and confident, to help him get the most out of his life.
When Owain left secondary school he had a range of options. He eventually chose an apprenticeship, following in his father’s footsteps as an engineer and laying the foundations for a career as a broadcast engineer.
When Arwel left Craig-Y-Parc, a specialist school in Cardiff at which he’d thrived once his parents had won the right to send him there, there were no such opportunities. That was it – education over. Or at least it would have been had he not had parents who were driven to get him the best they possibly could.
Arwel and his family visited National Star’s residential college in Cheltenham, Gloucestershire, but although they loved the ethos of what it did, Arwel didn’t want to live away from the family home in Cwmbach, Aberdare.
Anthony says: “There is no doubt that National Star is a centre of excellence. When I saw it there were feelings of great joy at what could be achieved, and sadness because Arwel didn’t want a residential education.
“But it was a revelation. As parents we wanted to have that in Wales. It became my mission.”
Thankfully National Star had started an outreach programme and opened a new day provision in Hereford.
With that blueprint in place and the charity knowing exactly what equipment was needed and how much it would all cost, Mr Evans was able to go to the Government and lobby for funding for a similar centre in Wales. It was a long and arduous process.
With his personal motto of “where there’s a will, there’s a way” in mind, he surveyed other parents to identify a need, rallied support from his local Assembly Member, and kept on calling and writing until he hit pay dirt.
“When you have a child with disabilities you have to fight for every single thing you need,” Anthony said. “Basically, you just have to become a nuisance.”
Arwel is now enrolled at National Star in Mamhilad, near Pontypool, which Anthony successfully persuaded the Government to provide funding for. It opened to its first students in September 2016 – just weeks after being given the financial commitment – providing learning alongside physiotherapy, occupational therapy and speech and language work.
When Anthony, who had to give up his engineering job to become a fulltime carer when the boys were eight, heard he had been shortlisted for the St David Award Citizenship category he was shocked.
“It’s an honour to be recognised for a St David Award but I don’t think I’ve done anything special. I’ve fought for my son and other young people like him to have the opportunity to continue learning but I would do anything for my son to have that so the fight to get it felt natural.”
Anthony sought help with the physical and financial toll of getting Arwel to college – a 500-mile-a-week trip for him to drive.
His next mission is to help other parents do the same through his Facebook page the Welsh Education Gap.