17/10/2013 07:34 BST | Updated 23/01/2014 18:58 GMT

Every Disabled Child Matters

Fourteen years ago, I gave birth to a very premature baby boy, with brain damage. It was no-one's fault, just one of those things. It has been a difficult journey, watching him grow up and not learn to walk or talk. We have got through it with love, and with joy at his survival, his courage, and the things he can do. Far bleaker than his disabilities, has been finding that we have to battle for almost everything he needs.

James is severely autistic, as well as having learning disabilities and challenging behaviour. He finds changes in routine terrifying. By the time he was five he would only leave the house to go to school. If we tried to take him anywhere else, he would attack us violently.

He woke for hours each night, sometimes smearing his faeces around the room. He has epilepsy, and we would find him some mornings floppy and blue, and would have to call an ambulance.

Having been a successful lawyer, I became a clinically depressed recluse. My marriage almost broke down, and my other son showed signs of disturbed behaviour. I used to dream of walking into our local reservoir and just keeping going, to escape the grinding burden. Social care provided no respite or help at home for years.

At some point, the lawyer in me woke up again, and I started the battle of a lifetime. I wanted lots more help for James. I found that although he had health, education and social care needs, the problem was that the three departments were separate kingdoms, each with their own laws. If you didn't agree with what they were doing (or not doing), they each had their own appeal process. After going round in circles for months, I finally realised that James needed a residential school. The council wouldn't pay for it, which meant that I had to go to the education tribunal.

Even with my legal background I quailed at the idea, but with family support and a good barrister I got James into Dame Hannah Rogers School in Devon, where all his needs are met in one place. It took five more years to get social care to provide the support he needed in the school holidays. Five years, four files of evidence, my MP, and an appeal to the Ombudsman.

We still have problems when we need services from outside school. There was a specialist classroom chair, which the school physiotherapist wanted. Health and social care spent almost a year arguing over who would pay for it, by which time James had grown and the design was no longer appropriate. Then he outgrew his wheelchair, and there was a stand- off between Devon and our local health service, as each thought the other should pay for it.

Similar battles are going on all over the country, and the government has recognised that this appalling situation must be addressed. It has introduced the children and families bill, which is being debated in the House of Lords today. A letter signed by 104 organisations has been sent to the prime minister and deputy prime minister, saying that the bill fails to provide the fully joined up system which is desperately needed.

At the heart of the problem is the fact that the bill is hinged on children's educational needs, not their disabilities. This is an artificial divide and is skewing the legislation. Getting enough physiotherapy to maintain the ability to move about is just as important as learning to read. As is having an extra pair of hands to stop an autistic child climbing on the roof, or getting nursing cover for an epileptic child at night.

The bill is principally concerned with children with significant special educational needs ('SEN'). This cuts out disabled children with lesser degrees of SEN, and those with none at all. For all children, even for those with significant SEN, the appeals process for each department will remain separate and unchanged. Meaning that families who desperately need respite and home help will be left battling hard up local authorities, trying to get help from a social care system which doesn't seem to care.