Conservative Policies On Disability
From a 2009 speech by David Cameron:
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.
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.
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.
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.
It’s 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.
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.
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.
PERSONAL 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.