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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!

The national pilots began in April 2018 and will run for two years. They will be evaluated by IFF Research and Belmana. I will be following their progress and will  campaign for the Tribunal to continue to have the power to make recommendations on health and care matters until that power is permanently enshrined in legislation.