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Campaigning over the Children and Families Act 2014

I was driven to write Standing Up for James, to try to raise awareness of the failures of the system which was designed to support disabled children, but which instead was causing widespread suffering.

One of the biggest problems which my family had faced, was that we did not have any respite or support at home for the first five years, for a child who needed one to one care 24 hours a day. We had to battle with social services for months to get anywhere. Even when we had some support, it became clear that James could only be properly educated and cared for in a residential school. However, in order to get him into the school we had to take the local authority to the Special Educational Needs and Disability Tribunal. That Tribunal could only consider James’s educational needs, not his care needs nor the needs of the rest of the family.

He began a termly placement, but still had no support at all for the 14 weeks of the year when he came home. In order to get support and respite from social care for that 14 weeks, we had to follow internal complaints procedures, culminating in an approach to the Ombudsman. The whole process took 5 years to resolve.

When the Children and Families Act was in its early stages, it became clear that this artificial divide between health, social care and education services would be perpetuated, even though the Act was intended to lead to more joined up thinking. I felt passionately that this should not be allowed to happen and so began campaigning vigorously to try to get the Act amended, to allow parents to appeal to Tribunal about all aspects of their child’s provision.

I was relieved when the Government at least agreed to a pilot scheme, whereby Tribunal judges could hear arguments about social care and health provision and make non-binding recommendations. When, after two years the decision was taken to roll the pilots out nationwide, I was dancing around the room.

I will  campaign for the Tribunal to continue to have this power, until it is permanently enshrined in legislation.

There is a summary of my campaigning activities here and you can read the evidence I submitted here.

I had never campaigned before this, and it has not been easy or fast. However this quote from the then MP Tom Clarke, sent to me via his assistant, kept me going when I felt I was getting nowhere.

 Tom wishes me to say that he is watching the progress of the Children and Families Bill with great interest and is keen to ensure that the provisions within it reflect the difficulties which families with disabled children often face. He is keen to read your book also and is going to order a copy from your publisher when Parliament reconvenes next week.
 He also wishes me to say that the journey of campaigning can be an unrewarding activity but it is a noble endeavour and whilst the path may become challenging at times, the destination, improving people’s lives, is worth the difficulty.

Warmest Regards.