Political Campaigning 

 

Children and Families Act 2014: campaign for  a single point of appeal from education health and care plans.


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 ensured that copies of Standing Up for James were placed in the libraries of both the House of Lords and the House of Commons, and they were eventually referred to in debates about the bill.

 

I was invited by the National Autistic Society to speak at a pivotal meeting of the all party parliamentary group on autism, about the importance of a single point of appeal from EHC plans. This was attended by the then minister for children and families, Edward Timpson, and the then shadow minister for education, Steve McCabe. The ministers conferred afterwards and the Government 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!

Below is the text of the speech I made to the APPG.


The national pilots began in April 2018. They are now being evaluated by IFF Research and Belmana. I am 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.

My experience since the Act came into force is that joined up thinking and planning for children and young people with SEND is still a goal rather than an achievement.

Speech by Jane Raca to All Party Parliamentary Group on Autism over importance of right of appeal to Tribunal over social care issues in EHC plans

                                                                   17 December 2013

Attended by Children and Families Minister Edward Timpson and then Shadow Education Minister Steve McCabe.

Introduction

The National Autistic Society has invited me to speak today, because I have a child with multiple disabilities, including severe autism. His personal story is very relevant to the SEN and disability provisions of the Children and Families Bill currently going through parliament and in a minute I will tell you that story.

I have been told that everyone here will be familiar with the concept of joint education health and care plans, which will replace statements of special educational needs. There is no doubt that from a parent perspective, the bringing together of the three services involved in their child’s life is warmly welcomed.  However, recording the child’s needs in one document is only the beginning. If parents can’t get each of the three bodies to put in the plans what their children need, or to provide it once it is in there, they must be able to challenge those bodies. This is more important than ever at time of austerity, when services are having to make deep cuts.

At present, parents can challenge educational provision through a tribunal. That is a very effective process.  It takes about 4 months, the judges are independent, and expert in the field, and parents can represent themselves. But if the parents want to challenge health or social care, they have to go through different internal complaints processes, leading ultimately to an ombudsman. This takes months if not years, is not independent and the remedies that can be ordered are limited. It is completely inappropriate for a situation regarding a growing disabled child’s needs.

So, not only are there three different points of appeal from the three services, (which is administratively impossible for parents to cope with), but  the complaints systems for social care and health are currently unfit for purpose. None of this this will change under the Bill as it currently stands. 

This means that families who already face the lifelong grief of a disabled child, will continue to suffer without adequate or any support, as they have been doing for far too long. The opportunity exists to change that by amending the Bill. There should be a single point of appeal to an independent tribunal, from all parts of EHC plans. Now I will tell my story.      

Many moons ago I was a commercial litigation partner in a national law firm. Life was hunky dory and high achieving. I had a toddler, Tom, who was not even 2 when my second son James was born 15 weeks early, with severe brain damage. By the age of 5, James had been diagnosed with cerebral palsy, severe autism, severe learning disabilities, epilepsy, and challenging behaviour. He couldn’t walk or talk, or use his left hand, and he was doubly incontinent. He woke for hours each night, sometimes smearing his faeces around the room. He often seized at night when were asleep, and on several occasions we found him floppy and blue and had to call an ambulance.

He would only leave the house to go to school, because only school could provide the very strict routines he needed. If we tried to take him out in the car we were violently attacked. Within the house, we had to follow the same exact sequence every morning and night, down to touching the wall at a particular point and eating the same cereal in the same bowl, sitting in the same position. I became suicidally depressed and Tom showed signs of disturbed behaviour. My marriage began to break down.

It simply didn’t occur to us to go to social care, but when we both broke down in tears in front of Jame’s paediatric consultant, she suggested we needed respite. We didn’t know what it was so she explained that James could go to a specialist centre for a few nights so we could get a break. We were so low, that we left it to a support worker to approach social care on our behalf. They came to our house to assess us, and then 3 months later we were told we didn’t qualify for respite. It took nearly a year and an appeal to get funding for James at a respite centre, for 24 nights a year. We still had no support at home.

For 2 more years we battled on, until I concluded that James could only live and learn with any meaning in a residential school. I thought he needed a full time placement. To my dismay our lawyer told us that the tribunal could only consider James’s education. Paradoxically, although for James, learning to walk and use pictures to ask for things was deemed ‘educational’, it seemed he was only supposed to do them things in term time. We won the tribunal against the education department. The first thing the social care department did was to cancel our respite. The school, Dame Hannah Rogers Trust, had assessed James as needing 1:1 sometimes 2:1 care all waking hours, 24 postural management and checking every 15 minutes through the night because of his epilepsy. Then for 14 weeks of the year we had nothing.  We faced being imprisoned together, me, my daughter then aged 4, and Tom, then aged 10, while Andrew was at work.

It took 5 years to get James his full time placement. Even as a lawyer I was operating in a fog of depression, which blurred everything. I didn’t know I could make a formal complaint about James’s social care provision. Between us my councillor and I wrote 6 letters and emails and received 6 holding letters back. We were going around in circles. My MP got involved. When I did find out about the complaints process, the complaint was worded by the council. The officer who investigated found for me on all 8 counts that had been drafted by the complaints department. However since neither he nor they were lawyers, it led nowhere. The council was simply asked to reconsider its decision not to give James a full time placement. It reconsidered, as directed, and still concluded that it wouldn’t give James a full time placement! End of complaint.

I could have gone to judicial review. Even as a lawyer that didn’t occur to me either. However if I had, the High Court would not have had the power to order what it thought fit for James. Only to review the administrative fairness of the council’s original decision. I lodged an appeal to the Ombudsman, but in the end, it was, ironically, an excellent social worker who got James his placement. One who took the time to investigate our family thoroughly, and to visit James at his school on a regular basis.  

My case is an extreme one, because my son is so disabled, and because my local authority, Birmingham, is in crisis and has been for many years. However, if I had to struggle this way with my legal background, and my son’s disabilities, what an earth is happening to other parents?  I know I am not alone. I get emails regularly from exhausted parents from all over the country. There are parents suffering depression in my situation who have killed themselves and their children because they can’t face another day. This has got to change. The government is refusing to agree to a right of appeal over social care in EHC plans, because for this right to be meaningful, there must exist a statutory duty to provide the individual care set out in each plan. Current statutory duties to provide social care to children in need are general, in that they are subject to the resources of the local authority. So, the Bill must be amended to provide a statutory duty to individuals, as well as right of appeal to tribunal over social care.

I don’t have experience of appealing against the health service and have deliberately confined my comments to social care for this reason. I believe that there may be different arguments against appealing to tribunal over health issues. If those arguments are insuperable, then please don’t throw the baby out with the bathwater. Half way is better than none.

I will finish with two quotes. The first was made by Judge John Aitken, Deputy Chamber President of the Health Education and Social Care Chamber, which includes the SEND tribunal.

''We are the Health Education and Social Care Chamber, and of course to whatever the policy may be and any resources which would need to be applied, this jurisdiction of the Tribunal would expect to deal with such appeals...’'

The second was made by Baroness Morris during Committee stage in the House of Lords on 6 November 2013.

“If you really want to change the culture of three separate public services, you must not give them an excuse not to make the change. Throughout the discussion of this Bill, we have said that it is not about passing a law but about changing the culture. Having such a pivotal part of the whole procedure still split into three separate parts is actually saying, “At the end of day, we could not do it. We wanted to integrate, but when it got to the tough bit, the bit about the appeal, we, the Government, could not do it”.

Let’s not let that happen. Let’s not condemn disabled children and their families to another generation of silent suffering.

 

I'm a paragraph. Click here to add your own text and edit me. It's easy.