Support for disabled children has been severely affected during the Covid-19 pandemic. Compounding the difficulties that parents and carers already faced when trying to access vital services.
We recently asked parents to fill out a survey on accessing support for disabled children – particularly mobility equipment.
In response, mum Donna got in touch to tell us about the difficulties she faces trying to access wheelchair support and services for her disabled son Dylan.
Donna has written this blog to shine a light on their story. The family live in Cheshire, so their story reflects largely on local services.
Wheelchair services are a complete postcode lottery; in our area they could be considered discriminatory against autistic children.
My son has Mosaic Neurofibromatosis type 1, Learning Difficulties, hypermobility syndrome and Autism Spectrum Condition (ASC).
He suffers pains in his legs coupled with severe fatigue that makes it hard for him to walk.
In addition, his ASC means that he’s hugely anxious that his legs are going to hurt so he is often unable to even attempt to walk.
His ASC also means he is easily overwhelmed in busy, noisy or unfamiliar situations which further contributes to his difficulties.
He has had a blue badge since he was seven years old, and we now get high rate mobility.
Nevertheless, our local authority doesn’t acknowledge that he needs a wheelchair. Their policy is that only children who need to use a wheelchair within their own homes should be supported.
In other words, in order to qualify for help the child must be effectively wheelchair-bound at all times.
They consider that wheelchair use outside the home is purely a social convenience, not a necessity!
However, my son is now 13 years old; well past an age at which I could carry him.
We live in a rural area. Without a wheelchair we’d be unable to walk to the park to play with friends, go to the library, or to any of the local shops.
We’d be unable to go into town to the shops, or the bank or anything that most people take for granted. That is an inadequate level of support for a disabled child.
It is hugely unfair that local authorities offer different levels of wheelchair support for disabled children. In other areas we would be eligible for help – Donna
Without his wheelchair he would be unable to enjoy a trip to the zoo, visit a castle – which he loves – or take part in any kind of educational field trip or workshop.
He would in fact be a prisoner in his own home as he is frequently unable to walk at all outside.
This year we will need to replace both his chairs. Because of where we live we have a three-wheeler and a normal wheelchair. Dylan has outgrown both.
We are currently living on one wage because I am a full-time carer to both my son and my father-in-law. So finding the money to replace two wheelchairs isn’t easy, despite my son being in receipt of HRM.
Over the years we have spent thousands of pounds making sure our son has the same access to life that a child without challenges would have.
It is hugely unfair that in other local authorities we would be eligible for help from wheelchair services, whilst in our current authority his difficulties – and the difficulties of many children like him – are simply dismissed.
Do you need extra support? Take a look at the support for disabled children that Caudwell Children offers here.
Dylan is one of thousands of disabled children that have been supported by Caudwell Children – receiving an adapted tricycle in 2018.