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.

 

On December 2013 I was invited by the National Autistic Society to speak at a meeting of the All Party Parliamentary Group on Autism, about the importance of a single point of appeal from EHCP plans.

I was relieved when immediately following that meeting 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.

At the foot of this page is the speech I gave at a meeting of the all party parliamentary group on autism in the House of Commons on 17th December 2013. It was at this meeting that the idea for the pilots was first mooted.

Lenehan Review into Residential Special Schools

In March 2017 

In December 2016, the then Minister for Vulnerable Children and Families, Edward Timpson, commissioned Dame Christine Lenehan to lead an independent review of the experiences and outcomes of children and young people in residential special schools and colleges. Dame Christine, a social worker by background, asked Mark Geraghty, then chief executive of the Seashell Trust, which runs an outstanding residential special school and college, to co-chair the review.

James has been resident at three special schools and is currently resident at the Seashell Trust. I wanted to ensure that both his and our experience fed into this review.  At the foot of this page is my submission.

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 Children and Families 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.

 

Lenehan Review into residential special schools 2017

Evidence submitted by Jane Raca to the Lenehan Review 20 March 2017

 Introduction

I am submitting this evidence as the parent of a 17 year old son who has been attending residential special schools for nine years. James has cerebral palsy, epilepsy, severe learning disabilities, autistic spectrum disorder and challenging behaviour. He can’t walk or talk, he uses a wheelchair and is doubly incontinent. Since he was 8 he has attended three residential special schools, being:
 •       Dame Hannah Rogers in Devon ( six years)
 •       RNIB Pears in Coventry ( six months)
 •       Royal School Manchester, part of the Seashell Trust (two years to date).  

James was initially a termly boarder, but by the age of 12 his placement had increased to 52 weeks. I have remained fully involved with his life, visiting him at least once a month, often staying overnight on site or nearby.  On occasions I have spent up to two weeks effectively living alongside James.  I have spent many hours in these schools, observing the teaching, the therapy and the care provided. I have experienced some superlative provision at all three schools. I have also witnessed when things go terribly wrong, as happened at Dame Hannah Rogers’ school in August 2014. Then the registration of the children’s home was suspended by Ofsted due to inadequate management and all the children had to be immediately relocated.

I was previously a litigation partner in a national firm of solicitors. James’s disabilities made it impossible for me to continue working when he was younger and eventually caused a family crisis, because the strain of caring for him day and night was intolerable. We had virtually no support from our local authority at that time and I identified placing James in a residential school as the only way for all of us to have a meaningful life. This involved going to SEND Tribunal. The experience we went through before we found this ‘way out’ was so shocking that I wrote a book Standing Up for James which was published in 2012. This led to me having regular contact with many other parents of disabled children and being asked by various disability charities to write and speak. 

I campaigned during the passage of the Children and Families Act 2014 for parents to be able to appeal to tribunal over the health and social care elements of Education Health and Care (EHC) plans. This is an important issue for children with complex needs and very relevant to residential special school placements. I am keenly following the current pilot scheme for SEND Tribunal judges to make recommendations on health and social care provision. I have given evidence to the CEDAR team at Warwick University which is evaluating the pilot project.

How and why these children and young people come to be placed in residential special schools and colleges  

James came to be placed in Dame Hannah Rogers school when he was only 8, because we could not look after him properly at home and trying to do so was destroying the family.   Apart from caring for a large boy who still needed regular pad changes and manual handling, James often had seizures at night, which could be life threatening. He had broken sleep, he smeared his faeces and he needed very strict routines or he would become distressed and aggressive. He would not eat with anyone else and had to be fed different food. He became violently distressed if we took him out in the car, and did not want to leave the house at all except to go to school. This rendered all of us prisoners at home for much of the time.  

If we had had more support from social care early on, our situation would have been easier but it would only have delayed the inevitable. Whilst the education at James’s day special school was very good, ‘education’ for James was not learning his times tables, but having  daily physiotherapy to keep his spastic muscles from seizing up, and learning to ask for things using pictures. It would be absurd to suggest that such things should stop in the holidays and it was beyond my capacity to do them with two other children to look after. For the same reason it was also impossible for us to achieve the degree of specialism and consistency that James needed in dealing with his autism, and to monitor him for epileptic seizures at night. His levels of need are so high that he is funded for 2:1 care during waking hours and 1:1 at night. 

 Another reason why James needed residential schooling is that it was going to be the only way he would have access to ongoing speech, occupational and physical therapy. The residential special schools employ therapists who are based on site and proactively monitor the children in school and  at home. Seashell Trust also has on site nurses and an assistive technologist. She has helped me to get special switches for James which use Bluetooth technology to connect to his ipod. He can now choose and play his own music in his bedroom without waiting for a carer to show him a selection of CDs. 

The pattern of provision across the country and how it is commissioned and procured 

 I researched the residential provision available to James when I went to Tribunal in 2007 and again when James had to be relocated in 2014. I used the Gabbitas guides on schools for special educational needs. There were few schools which catered for all of James’s complex needs. I visited:
·         Hollybank, near Leeds
·         Treloars, Hampshire,
·         Chailey Heritage, Sussex,
·         Star College, Cheltenham
·         Birtenshaw, Bolton.  

The geographic spread of all these schools makes the point; across the country provision is very patchy and many children have to be placed miles from their family areas because of lack of local provision.  The pool of residential schools seems to be contracting. The closure of Royal School for Deaf Children Margate in 2016 is an example.  This should be of deep concern to everyone in this sphere because of the large increase in the number of children with complex needs.   These schools, which often have historic roots giving them incredible expertise in specific disabilities, can be very vulnerable to loss of funding, most of which comes from local authorities. I would like to see a much more co-ordinated and supportive approach by central government to these precious resources, which are not replicated in the maintained sector, and which will be needed more than ever as the population of severely disabled children increases.  

How did you find the process of getting a residential place? 

Despite being a senior litigation lawyer, I was so depressed, and the system I was dealing with was so chaotic and unfamiliar to me that it took a long time to find my way through it. I kept asking the council’s social care department for a residential placement, not realising that the key to obtaining one was purely an educational matter. The social care department thought I was asking for James to be taken into care. It was only a chance comment by the head of James’ day special school that put me on track to research the law around residential special schools.

This is important to mention, as despite the introduction of EHC plans, education is still pivotal in getting a residential school placement.   The child must need a ‘waking curriculum’. That means that their education requires input which extends beyond the school day. This is quite a difficult thing for parents to understand and is even harder to prove. The reality is that a child whose needs are so complex that they require residential schooling is likely to be a child whose needs are putting the family under severe strain. The family is likely to be seeking respite as much as it is seeking specialist care, therapy and teaching for the child.  This is particularly so as respite is often rationed by local authorities. Fortunately even at the time we went to tribunal in 2007, case law had developed to define ‘education’ widely so that it could include therapy for some children. The situation has improved further following the case of Buckinghamshire CC v SJ [2016] UKUT 0254 (AAC) which held that a 20 year old man who had left school, but couldn’t in practice get the therapy he needed outside it, was entitled to a residential placement at college.

Even as an experienced litigator, going to tribunal when the happiness and wellbeing of my whole family was at stake was almost insupportable.  We had five expert witnesses and a lawyer. We wanted a 52 week placement even when James was 8, but our educational psychologist and barrister told us that we should only ask for a termly placement. That was because it would be much more difficult to prove that James needed ‘education’ during school holidays. The absurdity of this has been covered above. We were also advised to remain totally silent on the impact that caring for James had on the family. One of the main pillars of the local authority’s argument against us was that we were just seeking social care for James and that our appeal was not about his education.

The actual procedure and support from SEND Tribunal was good, and the judges at the hearing were sensitive and reassuring. Once the appeal had been filed the actual process was well conducted, despite being fraught. I was also deeply relieved to have access to a proper legal forum to establish James’s rights.

Are you happy with your child's residential placement? 

I am very happy with James’ current placement at Seashell Trust.  Extremely high levels of skill in dealing with non- verbal autistic children with learning disabilities are evident among all staff, including care staff, teachers and therapists and he is making fantastic progress.

What are the worst things about living in a residential special school or college?  

The system in all residential schools is most at risk of falling down for the children on 52 week placements during the school holidays. There can be a big difference in experience between being a student with a termly package and being a 52 week resident. The factors contributing to this potential weakness are:

During term time the school is the driver behind the child’s life. School provides a framework of support, occupation and routine. The care fits easily around this. However when school is shut during the holidays, particularly the long summer break, the care side on its own may struggle to provide a fulfilling programme of activities and to maintain therapy routines

Regular staff are taking their summer holidays and use of bank staff contributes to the difficulty in maintaining consistency and routine

There is a heavy demand from non- resident children for temporary respite services often provided by residential special schools. This can direct resources away from 52 week children when they most need them. 

Are you supported to keep in touch with your child?  

I am very well supported by Seashell Trust to keep in touch with James. All staff have individual emails which they read and reply to, so I am constant touch with many members of staff. If I have concerns and queries they are always responded to. The same applied to RNIB Pears. That had ceased to be the case at Dame Hannah’s when it was suspended and it is very important for absent parents.  

What outcomes would you like to see from this placement?

Once James leaves school I would like him to attend Royal College Manchester, part of the same Trust. Once he leaves education I want to find him a placement as an adult which will replicate as much as possible of the environment he is currently in. In that way he will hopefully retain the skills and abilities he has learned and continue to lead a fulfilling life.    

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