For our disabled daughter, a way out of the labyrinth

Published in The Guardian (March 11th, 2011)

Nothing prepares you for the birth of a child with profound and multiple disabilities. There is the shock, the depression, the grieving for the child you thought you had given birth to alongside the crushing realisation that all the old certainties in your life are no more.

Gradually you adjust, driven forward by love for your offspring. Then comes the awful discovery that the most traumatic part of your new life is not caring for your child but the battle to find a way through the maze of services supposedly set up to help them. Ask any parent of a disabled child – this is what makes daily life such a despairing trial.

This is why rates of depression, poverty, unemployment and family breakdown are so high among parents of the 100,000 children with complex disabilities in Britain. And this is why the government’s proposed overhaul of special educational needs is a significant step in the right direction. It accepts that the current system is too adversarial, setting up parents in a soul-destroying battle against bureaucrats that benefits nobody, and promises to replace “statementing” – in which a child’s needs are set out – with a single, statutory assessment process.

My wife had to give up her job to become a fulltime fighter for our daughter, who is blind, unable to walk or talk and suffers from complex epilepsy. Every day, week and month, there were meetings with doctors, nurses, teachers, therapists, social workers and council officials, to say nothing of endless nights in A&E. Each time, the same questions covering the same ground: birth details, family history, eating patterns, medical details, drug treatment and so on and on.

According to Every Disabled Child Matters, a child with disabilities experiences an average of 32 assessments. As parents of a 17-year-old girl at the most extreme end of the spectrum, we have endured many more. The costs are enormous: there can be 23 professionals involved in early years, so each assessment costs an estimated £11,615.

On top of the waste of time and money come the dispiriting turf wars. At meeting after meeting, armies of public servants would discuss our daughter’s needs. Yes, they would agree, she needed nappies, a new wheelchair, transport to school, or respite care. But no, they were not going to pay for it since it was not their department’s responsibility.

Promises of action are followed by a wall of silence, and you end up having to harass and harangue people to deliver things everyone has agreed are needed. Charities tell of wheelchairs taking so long to be delivered the child has grown out of them by the time they arrive.

Such examples demonstrate why the core aims of Michael Gove’s green paper have been broadly welcomed. First, it offers hope of an end to a system in which needs are assessed by local authorities. This is one reason why the current process, crucial to a child’s future because it offers legal protection of needs but undertaken at a time of great vulnerablity for parents, often ends up in court. Second, it encourages the growing use of joint commissioning, in which parents and professionals come together to develop a more streamlined strategy. And third, it gives parents the right to control their budgets by 2014, which has been shown to deliver better – and often cheaper – services.

We have been fortunate to have a glimpse of this future, although it took my daughter’s decline to near death to deliver a decent service. A palliative care team brought together health, social services and education and, recognising we were the real experts in our child’s needs, allowed us to shape a package of care that went towards meeting them for the first time. It did not take more money – it took more sense, co-operation and flexibility.

But there are caveats. Personalised budgets must not be used to allow local authorities to evade responsibilities, especially where there are shortages of respite carers. And for all the talk of choice, there is an alarming line in the green paper to the effect that choice can be denied if it is thought there is an “inefficient use of resources” – which sounds like a giant escape clause.

The number of children with severe learning difficulties is growing, thanks to medical advances. They can cost taxpayers six-figure sums each year (although it is far more expensive when parents have to put children in care). So the other worry if these promises turn into reality is that while children with complex needs win better services, those with less well-defined and less severe disabilities lose out in the scramble for funds. It is easier for a council to ignore a child with mild autism, for instance, than a child such as mine. There is already evidence of this happening amid the spending cuts, despite extra money for respite care.

Nowhere is this more of a threat than in schools. More than one in five pupils are deemed to have special needs, a figure that has spiralled out of control. Ofsted has said close to half a million are misdiagnosed, and even Mary Warnock, the architect of the system, has condemned the abuse. But this still includes significant numbers who, while not disabled, have genuine behavioural problems or learning difficulties. The green paper offers the right remedies, such as early intervention, but is short on detail. Many parents will fear their children being abandoned to save money; the government must prove they are not.

We are lucky: our daughter finally has better support. But for the first 15 years we were pushed close to breaking point, caring for a child with complex needs and a life-threatening condition. Hopefully we are learning from the mistakes of the past, so that life is made easier for the next generation of children with disabilities and their parents.

Categorised in: Disability, home page, Public policy