How the forthcoming Children and Families Bill could affect families like my own
The greatest disillusionment I suffered through having a severely disabled child was not his disability; it was the realisation that despite living in one of the most civilised countries in the world, I had to fight for so much of what he needed. The organisations which dispensed services and equipment seemed to be sitting on pots of money which they wanted to keep and they rarely talked to each other. They rarely talked to us either.
There was the specialist classroom chair, which neither social care nor health would fund. While they were arguing about it, James grew too big for it. There was the lack of an occupational therapist, because the council had decided that physiotherapists could do that job and they could save money. I had to make James his own adapted shower, using a garden chair and a hosepipe. Most seriously, tearful appeals to social care for support were ignored, despite James needing 24 hour care. This nearly destroyed our family.
Fortunately, the lack of joined-up planning for children like James – the damage caused by protecting departmental budgets at all cost and failing to communicate with parents – has been recognised. After many decades of families suffering terribly, the Children and Families Bill is designed to change things. But will it?
Opportunities and liabilities
One change which I won’t be taking advantage of is the option of having a personal budget. The very idea makes my hair stand on end. James’s level of need is so high that he requires hundreds of thousands of pounds worth of services and equipment to be commissioned each year. I have neither the skill nor the time to do that. I have directly employed carers for years and, even as an ex-lawyer, I find the paperwork for this one task to be time consuming and daunting. Although I use a payroll agency, I have to negotiate wage levels, calculate holiday payments, fill in annual returns for the council and chase them for the money which has been agreed, but which is usually several months late arriving. While there are experts like James’s current school to do the rest, I shall gladly leave this to them.
The Bill brings a positive change for my family, however, in that James may now be able to have the protection of his statement – due to become an education, health and care (EHC) plan – beyond 19, up until age 25. He will always need one-to-one care, 24 hours a day and he will be better protected by the education system, whatever its flaws, than he will be by the adult social care system. I hope he will be able to stay at his current school as long as possible. He currently gets the intensive speech, occupational and physiotherapy he needs there. I dread that one day he may end up in an old people’s home with no specialist support.
EHC plans in general sound like a good thing. They should result in better cooperation between social care, education and health, as these services will have to talk to each other, instead of remaining in separate kingdoms. I am still scarred by the experience of weeping at successive social care reviews, asking for James to go to a residential school and being told he was “not eligible to be taken into care”. I wasn’t asking for him to go into care; I have never done that, however awful things were. But that was the mind set of social care. I should have gone to the education department, but I didn’t know that then. When I finally worked it out, the education department refused the residential placement anyway, and I had to take the council to tribunal.
This was without doubt one of the most traumatic experiences of my life. On one side of the room sat the local authority team, including James’s headteacher and a barrister. On our side sat our family, a raft of experts and our barrister. The barrister for the council argued that we were just seeking social care, which didn’t justify the very expensive placement we wanted. I felt as if I was being accused of being an uncaring mother who couldn’t be bothered to look after her son and just wanted him out of the way. I burned with shame, even though my efforts to look after James had nearly killed me.
After reams of evidence from experts, the pivotal moment came when my husband stood up and said: “When I put James to bed we have a little routine. James likes me to walk him to the window and he puts his hand on it and looks at me. And I say, ‘‘Yes James, it’s cold’’. Then he puts his hand on the radiator and looks at me again. And I say ‘‘Yes James, it’s hot’’. He knows the difference between hot and cold. And he wants me to say it because he can’t say it. He’s very bright but we can’t give him what he needs at home. So we are showing our love for him by coming to this tribunal and asking for him to go to a residential special school.”
Then he broke down.
Will things be different?
If the Bill had been in force at that time, I wonder what would have happened. Perhaps social care, health and education would have had to get together at a much earlier stage than they did, to produce James’s EHC plan. If they had not agreed to a residential school, then we would have been directed first to consider mediation. The local authority would also have in place dispute resolution procedures. Ultimately though, if all this failed, we would still have appealed to tribunal. My hunch is that indeed we would still have ended up going along the tribunal route. The reason is simple: money. Children like James are very expensive. Cash strapped local authorities and health services will still be looking to their budgets, despite the greater duties on them to cooperate and commission services.
I have obtained this quote from one former senior councillor: “The Council does not have the resources to fulfil all of its statutory obligations and so may avoid identifying a need which it cannot meet. Like other councils across the country, it plays for time and space to protect its budgets. It relies on applicants’ lack of knowledge about their rights, to achieve this. When it meets a strong applicant, it adopts the historic Russian military strategy of retreating, while it strengthens its position and weakens that of its opponent.”
Whilst the Bill may make it more difficult for councils to behave like this, I believe they may have no choice but to try. In the end, our ability to have our case heard by an independent legal tribunal, however traumatic, saved us. Thank goodness that route will still be open to parents under the Bill. Yet even the Tribunal could not help us with James’s social care; we are still fighting for his holiday provision after five years. And that won’t change. Parents struggling with no respite and no home help will still only be able to go the Local Government Ombudsman or seek judicial review. They will have to exhaust the council’s complaints procedure before they can even think of the Ombudsman, all of which takes months. Judicial review only looks at the council’s original decision; the court can’t order what it thinks best. Neither of these remedies are appropriate for exhausted, struggling parents with the most severely disabled children; when the gloves are off, they will be no better placed than they are now.
Jane Raca is the author of Standing up for James, a memoir about coming to terms with her son’s disabilities, and her fight to get support for him from the local authority: