David Cameron on disability

David Cameron's son, Ivan, who suffered from cerebral palsy and epilepsy, died tragically earlier this year. In a recent article in The Independent, Cameron poignantly described his family's experiences and the lessons he learned about disability. Those of us who work with children with disabilities and with their families would do well to take note of his views.

Photograph by Roger Taylor from The Telegraph.

"The first lesson I learned was the importance of early intervention and help. The day you find out your child has a disability you're not just deeply shocked, worried and upset – you're also incredibly confused."

and,

"The second lesson was that life for parents of disabled children is complicated enough without having to jump through hundreds of government hoops. After the initial shock of diagnosis you're plunged into a world of bureaucratic pain."

I quote Cameron's third lesson fully, as it relates to inclusive education versus special schools. South African educational authorities have, somewhat reluctantly, accepted that there is a place for special schools. Overzealous inclusionists, however, often mislead parents with empty promises about support that never happens.

"The third lesson is that we've got to make it easier for parents to get the right education for children with disabilities. So many parents get stuck on a merry-go-round of assessments, appeals and tribunals to get a statement of special needs and the extra help their child needs. There's a structural reason for that. The people that decide who gets specialist education – the local education authorities – are also the ones who pay for it. We're seriously looking at how we can resolve that conflict of interest so that parents don't have to enter into such a huge battle for special education.

Something else that many parents have to fight tooth and nail for is a place in special school. Following the gospel of inclusion, the Government has closed dozens of special schools down in the last decade. Inclusion is great for some, but it's often the case that putting a disabled child in a mainstream classroom is a square peg-round-hole situation. So we're going to stop the closure of special schools and give parents more information and greater choice."

and,

"The fourth lesson is that like all other carers, parents need a break. One of the biggest challenges when your child is severely disabled is finding time to do normal family stuff – playing in the park with your other children, doing the weekly shop, mum and dad going out for a meal."

finally,

"The fifth and final lesson I'm going to share is this. The very painful thing about disability – whether your own or your loved one's – is the feeling that the situation is out of your control. When the system that surrounds you is very top-down, very bureaucratic, very inhuman, that can only increase your feelings of helplessness. So a really big difference we can make is to put more power and control right into the hands of parents, carers or those with disabilities ..."

Cameron concluded:

"This is the support, trust and respect that parents of those with disabilities deserve.

Because we can never forget what an amazing job they do. ... We need to recognise that by staying strong and holding their families together, these parents are doing a great, unsung service to our society."

Cameron's is a voice of reason in a field where emotion and sentiment often rule.