David Cameron: The five lessons I learned as father of disabled child – and intend to put into practice

The Conservative leader reveals how his experiences have helped to shape his party's welfare policy

When it comes to the policy decisions they make, politicians are influenced in a number of ways. You take advice from experts, you learn from history and you listen to what people tell you in your own constituency and as you travel around the country.

But a lot of the time, you go with your instincts and your values – what you believe to be right and what your experience tells you works. It's because I had the benefit of a good education that I'm so passionate about reforming our schools so that every child gets the best start in life. It's because I have such great parents who have supported me throughout my life that I am committed to strengthening families.

The same is true with my approach to disability. My son Ivan was born with a profound disability, and my experience of looking after him has changed the way I see a lot of things – not just as a father, but as a politician, too. Samantha and I went on a steep learning curve. From that I learned five big lessons that have had a direct impact on what my party wants to do in government for those with disabilities and their families.

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.

It feels like you're on the beginning of a journey you never planned to take, without a map or a clue which direction to go in. That's one of the reasons why the next Conservative government is going to increase radically the number of health visitors. I'm not suggesting it's their job to diagnose disabilities, but for decades they've been in the home with parents, spotting warning signs early and offering sound advice. I know how crucial that early help is, which is why we need more of it.

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. Having your child assessed and getting the help you're entitled to means answering the same questions over and over again, being buried under snow drifts of forms, spending hours on hold in the phone queue.

I am determined to make life simpler for parents. One option we're looking at is inspired by something they're doing in Austria. There a crack team of medical experts – doctor, nurse, physio – act as a one-stop-shop to assess families and get them the help they need. That would have been such a help to us and families like us, so we're looking closely at the evidence and considering how we could do something similar here.

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.

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.

Respite made a massive difference to my family. Knowing that Ivan was with people who knew him, who would love and look after him gave us a huge wave of relief. Backing respite means backing the voluntary sector, giving parents and carers greater choice over the respite that suits them and looking at all ways of making sure there's a clear entitlement to respite.

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 – through personal budgets and direct payments. That means that instead of giving a little bit of money from health, from education, from children's services, we say to people: "Here is the total budget for you or your child, you choose how it's broken down." And instead of insisting on separate, bureaucratic bank accounts for that money, it is right people should be paid directly if they choose. 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. Just consider what it would mean if the army of parents and carers in this country gave up, packed up, said they couldn't cope any more. The financial cost of looking after those children would be immense – and the emotional cost doesn't bear thinking about. We need to recognise that by staying strong and holding their families together, these parents are doing a great, unsung service to our society.

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