Clare McCarthy on why she became a fighter for disabled children

There can’t be many families who regularly wake up to Abba’s Mamma Mia, Waterloo or Thank You for the Music, but in Clare McCarthy’s household this happens every morning.

Her son Matthew, 15, who has Williams syndrome, a rare genetic condition which causes medical and developmental problems, is obsessed with the band and plays their music when he rises at 5am.

One of the characteristics of the syndrome is a love of music, but, for McCarthy, hearing Abba – whose music she used to like – “brings me out in a rash”.

Another of Matthew’s habits is rushing down to the kitchen to eat large amounts of food as soon as he wakes. McCarthy says coded locks have now been placed on the doors to prevent this.

Matthew has the functioning of someone about half his age, orthopaedic and heart problems and has already had to undergo 15 operations. McCarthy says he receives good quality health and social care services and that his school is also great but, as he approaches 16, she is “worried sick” about his transition into adulthood and what that will mean in terms of services.

She says Matthew is comfortable with the health professionals who work with him – a  relationship of trust having been built over many years – but that this will be lost when he moves to adult services.

She is in discussion with Matthew’s school about whether he will be able to stay on to do his sixth form there or will have to move to a separate college, something she is very much opposed to.

She says that having another son close in age to Matthew (17-year-old Tom), has brought home to her how much the system discriminates against disabled children, with Matthew’s life being governed by budgets.

“We went for Tom’s review at 14 and we said he would like to stay on into sixth form and then university. At Matthew’s review we said we would like him to stay at his school for another two years and then we spoke about budgets for half an hour.”

McCarthy is heavily involved in the Every Disabled Child Matters campaign being run by charities including the Council for Disabled Children and Contact a Family.

She first got involved in campaigning when Oxfordshire Council decided to close down its short break centres five years ago. At the time, she had been on a waiting list for two and a half years to gain entitlement to one overnight stay a month for Matthew and became enraged when this was set to disappear.  After much protesting, half of the beds were saved but McCarthy continued with her disability campaigning.

“The fact that Matthew is very good at making friends and likes to hug MPs has been helpful,” she says.

McCarthy is now entitled to two overnight stays for Matthew a month and while she says she appreciates this, it being more than many other parents she knows receive, it is nowhere near enough. She says that all the family needs is a bit of time for themselves with the “locked doors open and the Abba off” to help them along.

In May, the government announced £280m for more short breaks as part of a £340m funding package to improve support for disabled children over the comprehensive spending review period 2008-11.

McCarthy says this is a good “down payment” but more funding will be required to address years of the group being a low priority. And, as well as the moral argument, it also makes financial sense to support families of disabled children as residential care is highly expensive, she argues.

“Most of us can get our heads down and get on with it. We just need a bit of support,” she concludes.

Contact the author
 Amy Taylor

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