This page is currently being updated, but below is my most recent evidence, given to the Lenehan review into residential special schools submitted 20 March 2017
Evidence submitted by Jane Raca to the Lenehan review 20 March 2017
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)
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
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 Jameswhich 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.
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
Hollybank, near Leeds
Treloars, Hampshire, ·
Chailey Heritage, Sussex, ·
Star College, Cheltenham
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.
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
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  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
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
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
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
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.
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
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.