David Cameron, MP, Leader of the Opposition

Presentation to the Falling Through the Cracks Conference, 16th July 2009

Text of Presentation

I'm very glad to be here today. Most of the speeches I've been giving recently have been on subjects that have dominated the national news - expenses, democratic reform, getting the budget deficit down.

These are very important things. But sometimes it's good for politicians to think about issues that may not be in the news every day but that directly affect the most important thing and that's the people we love.

Disabilities of all types affect millions of families in this country. My family is one of them. My son Ivan's life changed the way I see a lot of things, not just as a father but as a politician too. So I couldn't come to a conference on autism without drawing on my own experience and telling you the lessons I've learned - about how we can make life better for disabled people and their families.

Autism

Before I do I want to say something about the subject of this conference. There are few conditions shrouded in such myth and misunderstanding as autism.

It's such a wide spectrum, from those with high functioning autism and Asperger's to those who need 24-hour care from those who - with a lot of support - manage to hold down jobs and have relationships, to those who can find themselves living on the outside looking in. All of them are seeking the right help from a sea of options.

That's why it's so great that Research Autism exists. By shining an objective light on the interventions that are out there, you're lifting the fog of confusion that hangs over autism.

The National Audit Office report shows why we desperately need that to happen. Although we understand so much more about autism than we did just ten years ago, today most local authorities and primary care trusts still don't collect any information on the number of adults with autism, or what their needs are.

Today the vast majority of GPs still say they need more training on autism so that they can make the right judgements. Today the police are still arresting people for anti-social behaviour, when in fact it's normal autistic behaviour. The country simply hasn't caught up with the fact that over half a million people in the UK are on the spectrum. A combination of ignorance and negligence means that so many young people genuinely do fall through the cracks, their needs ignored and their potential wasted.

A third of adults with autism have suffered severe mental health problems because they lack the right support. Just fifteen per cent of those on the spectrum are in full-time, paid jobs. Too many feel locked out of society when they could be playing an active part.

I had a particularly tragic case in my Oxfordshire constituency. It was a young woman with severe autism who went to live in London. Her father came to see me in complete despair. She had cut her parents out, so they couldn't help her any more. Because she wasn't classed as mentally ill the mental health professionals didn't help her. Because she was no longer a child, children's services couldn't get involved. She was on her own in the big city. It was heartbreaking listening to the anguish of her father. This person had literally fallen through the cracks and that's why it's so great you're holding this conference today.

Autism Bill

It's not just Research Autism trying to put this right. We're working on it in Parliament too. I'm very proud that it was a Conservative MP - Cheryl Gillan - who having won the Private Members' ballot then chose to take through Parliament the UK's first-ever autism bill.

This is about enshrining into law the right, compassionate response to autism. By putting a legal duty of care on councils and NHS services it's going to bring many adults in from the coldness of isolation. By seeking to improve the way departments work together it's going to help seal up the cracks that adults with autism fall through. It's a long-overdue piece of legislation and I believe it's going to make a big difference to many, many lives.

When it comes to disability policy, that's got to be our starting point, how can we make a big positive difference to people's lives. We can't wave a magic wand to make everything better. If you or someone you love suffers from a disability, life is going to be hard a lot of the time. But I do believe there are moments of despair, helplessness and frustration that could be directly alleviated by the work of government.

So now I want to tell you the policy lessons I take out of my own experience. I know that every disability is different. In particular I know there is a great difference between what I experienced - someone with a severe disability needing 24- hour care to those who with the right help and support can get on in all areas of life.

But I think that the experiences of all families who find their world turned upside down are bound together by similar feelings and if we can work on making those families happier, we can make children with disabilities feel more secure, which in turn is going to help prepare them for the journey into adulthood.

Early Intervention

Let's begin at the beginning. 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.

So the first lesson I learned was the importance of early intervention and help. Having a kind face round the kitchen table to listen and talk you through things is crucial.

So often the government tries to respond to needs like this by creating new roles with new titles. I say - why don't we enhance a role that already exists, the people who are already there in the home with parents, who are trusted and caring and competent to deal with this, in other words, health visitors.

I'm not suggesting it's their job to diagnose disabilities, but for decades they've been spotting warning signs early and offering sound advice. That's why the next Conservative Government will radically increase the number of health visitors across the country, giving every parent that professional support in their home.

Simple Assessment

So once you've found the help and had some advice, what comes next? The answer is that you enter a world of bureaucratic pain, where you're asked the same questions about your child over and over again, where your desk is obscured by stacks of forms to fill in, where you spend half your life waiting on hold in the phone queue.

It's the world of the Disability Living Allowance with its Care Component and Mobility Component, the Carer's Allowance, Low Income Benefits, Child Tax Credit, Child Support, Housing Benefit, Council Tax benefit, grants from the Family Fund.

The orgy of assessment for social care means that one pound in every four that the state spends on children with disabilities goes on the form-filling and commissioning - and not the care.

In these times of tight budgets, we need to make sure the money we do spend is better spent. If we don't we are failing disabled people and their families.

And it's not just expensive for the state - it's exhausting for the parents. Instead of having to bash down every door, the door marked disability permit, the door marked special education, the door marked benefit entitlement, why can't we have one door that opens on to all the things parents need?

In Austria they've got a great assessment process for severely disabled children. A crack team of paediatric doctor, physiotherapist, child psychiatrist and nurse come into the home, make an assessment and give the family all the support they need.

For the sake of these families' sanity we are looking at the evidence and considering doing something similar in the UK, pulling professionals like doctors, paediatric nurses, physiotherapists and benefits specialists together in one team to act as a one-stop-shop for assessment and advice.

This way they could help families clear that first hurdle quickly and efficiently and effectively give them a key to open one door to everything they need. That would put paid to the days when getting the right help means answering more questions than you would for a mortgage.

Statementing

In some ways it's understandable that the authorities ask so many questions. It's revealing a truth they themselves don't often acknowledge - that you know your child better than they do.

So that's the next obvious lesson: let's listen to parents more. After all, parents are the people who really understand their children's needs - and nowhere is this more true than in families where a child is disabled.

I get a lot of people whose children have disabilities coming to my constituency surgery. Nine times out of ten they're fired up about one thing: their child's education. And nine times out of ten they are completely fed up with the twisting, turning, Byzantine system of statementing for special needs.

So many parents get stuck on a merry-go-round of assessments, appeals and tribunals. One told a Conservative education seminar he had spent £10,000 in solicitors' fees. It's the most exhausting battle, and there's a structural reason why. The people that decide who gets specialist education are also the ones who pay for it - the local education authority. That's why you have to fight for the speech therapy, battle for the physio, struggle for the extra help you know your child needs. You have to fight because they know if they say yes to that statement, they're going to have to pay for it. This conflict of interest is clouding objective judgement, and we're looking seriously at how we would resolve that in government.

There's something else you understand if you listen to parents - and that is that the educational needs of autistic children are particularly varied. Some think mainstream school is best, others want a special school place, others are looking for a specialist autism unit. All of them know that getting it right means the difference between a life half lived and a life fully enjoyed.

But too often they're denied a choice. Following the gospel of inclusion the Government have closed dozens of special schools down in the last decade. Our approach is completely different.

Itss a fundamental Conservative belief that one size doesn't fit all, and nowhere is that more true than in special education. We need the square holes for the square pegs and the round holes for the round pegs so we're going to put a stop to the special school closures straight away.

Respite Care

While parents rage about their child's education, there's another big wish they express in a much quieter way. It's simply 'I need a break'. We certainly felt that way sometimes. We're not all angels.

Looking after someone with a serious disability is seriously tough. Some parents just don't have the time to do simple things like the weekly shop or family things like a game of football with your other children or relationship things like a meal out with your wife or your husband. These are the little things that hold families together, and too many families with disabled children break apart.

The trouble is you're incredibly torn, because when you have a disabled child you worry like mad. You worry that they will be cared for, looked after and loved while you're not there. When you find that reassurance - whether it's someone staying at your house who knows him well, or a play centre you know they enjoy, it is a huge wave of relief.

I had a letter recently from a parent who spelled respite 'rest bite' - and I thought, they've got that right. That somehow conveys the chunk of rest and relief that respite gives you.

But so many families, so many carers never get that. They shoulder a huge burden with very little time off.

Almost two thirds of carers have not had a break for over a year - and that is scandalous. The sheer intensity of this lifestyle takes a terrible toll. A recent Mencap survey found that 8 out of 10 families who care for a child with a learning disability said they had reached breaking point at one time or another.

If we're serious about helping families, making a big positive difference to their lives then we've got to make it much easier for parents and carers to access respite care. It made a massive difference to my family. The people who helped us out were heroes.

Voluntary Sector

That brings me to the next lesson, drawn from my own experience - because more often than not those heroes came from organisations in the voluntary sector. In our case one of the places that gave us valuable respite was Helen House, a children's hospice.

It drives me mad when people call it the third sector because when it comes to hospices that look after kids with disabilities they didn't get there third - they got there first. The state does not have a monopoly on caring for those most in need.

The truth is, it can crowd out those groups or charities that are best placed to give people the personalised, local help they need.

So government needs to not only trust and respect the voluntary sector properly it must actively work to unleash its power by giving more grants without a hundred strings attached by bringing the voluntary sector into public service provision and by smashing down all the burdens of tax and regulation that make the simple business of doing good very difficult.

Pesonal Budgets and Direct Payments

One big way we can strengthen the voluntary sector is by giving the power to choose respite in the hands of the carer. That leads me to the last lesson I'm going to share with you today.

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 the really big difference you can make is not just to make the interaction with the state more personal - through health visitors and local voluntary organisations not just to make it less combative, through sensible statementing or more compassionate, with regular respite care.

The big boost you can give people is putting 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, a little bit from education, a little bit from children's services, we say '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.

That doesn't mean those parents should be left on their own just to get on with it with no help. I know how difficult it can be to navigate all the different services, treatments and carers on offer so even with personal budgets people need to have the benefit of professional guidance so they make the right decisions with their money.

And while we're talking about making life simpler for parents, there's something else that needs to happen. It's got to get easier for parents to access local services and facilities.

I've heard of people wanting to take their child to a hydrotherapy pool or sensory room in a local special school but they're shut on the weekends - the only time working mums and dads can go. There are tons of resources out there that people find it difficult to tap into, so we need to encourage them to be opened up to the community more. 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 in state institutions would be immense. The emotional cost doesn't bear thinking about. We need to recognise that by staying strong, carrying on and holding their families together, these parents are doing a great, unsung service to our society.

Conclusion

I hope I've shown you three things today.

I hope I've demonstrated how committed the Conservative Party is to leading a new understanding of autism in our society. I truly believe that this Autism Bill - like the NAO report - is just the start of a great long campaign for change, acceptance - and a better life for both children and adults with autism.

I hope I've shown that - perhaps partly because of my own experience - I am committed to supporting families that care day-in, day-out. I've said many times that family is the most important institution there is, and that institution needs to be super-strong around people with disabilities.

And I hope I've reassured you that though we are facing difficult economic times as a country though tough decisions will be made about what the state can and cannot do, it would run entirely against the grain of the Conservative Party I lead to neglect the people who need our help the most.

I do believe that you judge a society by the way it treats its most vulnerable - and it's my hope and belief that if we win the next election then together with great campaigning and research organisations like yours, and the voluntary sector and an army of families and carers, and the millions who practice compassion in this country in their daily lives, that together we can create a society we are all truly proud of.