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... into Residential Special Schools (co-chaired by Mark Geraghty)


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.