Children and Families Bill

Memorandum submitted by Jane Raca (CF 29)

Public Bill Committee re Clause 50, Children and Families Bill.

1. Introduction

I am a former litigation solicitor, and have a profoundly disabled son, James, who is 13. He has cerebral palsy, epilepsy, learning disabilities, challenging behaviour and is severely autistic. I have extensive personal experience of the education, health and care systems for disabled children. What my family went through over a decade, shocked me so much I wrote and published a book about it: Standing up for James. The book has had national press coverage, as has my story. [1] I am now working with Scope, Mencap, the National Autistic Society, and Dame Hannah Rogers Trust to raise awareness about the reality of living with severe disability.

2. Summary

My submission today relates to the right of parents to appeal the social and health care provision received by their disabled children. Whilst the Children and Families Bill introduces joint EHC plans, it does not extend the right of appeal from those plans beyond the education content. I believe this must change, as the failure of local authorities in particular to provide adequate social care for severely disabled children, is leading to great suffering, for which there is no realistic redress.

3. Why is there suffering at present and no redress?

If a child needs 24 care from birth and his/her parents are refused respite or home help provision, then they are at grave risk of personal and family breakdown.

They only have two options:

o They can apply for Judicial Review

o They can appeal to the Local Government Ombudsman.

Judicial Review is an expensive, lengthy and technical option. It is also unsatisfactory. The High Court can’t order the provision it thinks necessary, but only rule on the local authority’s initial decision.

As for the Ombudsman, if parents are even aware of their right to complain, they have to start by exhausting the council’s internal complaints procedure first. The whole process takes months, even years.

By comparison, if they wish to appeal the educational provision for their child, they can appeal to the First Tier HESC Tribunal, be unrepresented and be heard by independent specialist judges within 4 months.This Tribunal often hears issues of social care and health and is ideally placed to rule on the complex intertwined needs of a severely disabled child.

I accept that there are statutory duties on local authorities to provide support for disabled children, who are defined as ‘children in need’ from birth. [2] However, for budgetary reasons local authorities may try to avoid being caught by these statutory duties. [3]

 In my experience unless a parent has a realistic method of challenging the local authority, then even new statutory duties will not go far enough and there will be no change.

4. My evidence

Despite being a partner in a national law firm before James was born, I found myself unable to see beyond getting through each day in a haze of exhaustion and depression. James required one to one care for all waking hours. He wouldn’t leave the house except to go to school, and attacked us if we tried. We were prisoners in our home.

He woke for hours each night, would eat his own faeces and smear it around the room. Sometimes he had a seizure in the night and nearly died, as he was unattended.

It was only when James was 5 years old and my husband and I broke down in front of his consultant that we found out that we were entitled to respite. We were then turned down by the council, and it took 12 months of writing letters before we got just 24 nights a year with James in a respite centre. We had no help at home.

I gradually became suicidally depressed and my marriage began to break down. Both our children were on waiting lists to see clinical psychologists for behavioural problems.

Despite independent reviewing officers repeatedly recording their decision that social workers should assess our family for home support as a matter of urgency, we had no funding for help at home until four years after social care first became involved with us.

I eventually found out that if I challenged James’s statement of special educational needs, I might get him in a residential school. It took a long time to get to this point, as despite having been a partner in a national law firm, I didn’t know that the ‘disabled children’s team’ at the council was in fact a social care team. I had to go to the education team to appeal James’s statement and this department seemed totally unconnected with social care.

I was then in the highly artificial situation of having to prove that James’s ‘educational needs’ could only be met by a waking curriculum: i.e. that he needed ‘education’ outside school hours. If I couldn’t prove this I would fail. So I hired lots of experts to show that for James, learning to communicate with picture cards was education, as was doing therapy stretches to help him walk. I argued that neither of these things could just stop at 4pm.

I was very fortunate in understanding this and James got his placement. He has developed as a much more mature, tolerant and empowered individual as a result of the intensive and consistent support provided by Dame Hannah Rogers Trust. However 5 years later I am still battling with social care over his holiday provision. I have been asking for it to be increased since April 2009, to no avail. After complaining to my councillor and MP twice I discovered in 2010 about the Ombudsman and went through the council’s complaints procedure. An independent investigating officer produced an 80 page report vindicating me on all counts and asking the council to consider a full time placement for James. They did as he asked and still rejected it. Because they had done as he asked, I then couldn’t complain to the Ombudsman. I have now started all over again, asking for a full time placement. Six months have elapsed with no answer. The internal complaints procedure is not concluded so I can’t yet go to the Ombudsman.

We cannot cope with James at home now; there are safety issues for him, his siblings and us. He requires 2:1 care most of the time which we can’t provide. If the council do not approve his full time placement soon, I will have to ask for him to be taken into care in the holidays, and pray they leave him at Dame Hannah’s.

5. Conclusion

Even with a legal background and supportive family I have struggled with this system. I have proved in Tribunal that James needs extensive care including at least 1:1 supervision during all waking hours. Yet I have had to continue arguing the case for his holiday cover for 5 years without resolution, repeating the same evidence in one report after another.

If the Committee wish to see any of the written evidence which I have carefully collated over the years (and which is reproduced in my book) then I can produce a schedule for them. At present I am anxious to submit this memorandum as I believe members will be considering clause 50 of the Bill imminently.

March 2013