Out for justice: Families with disabled
children are suing Wandsworth council |
February 23, 2003
REPORT: CAROLINE SCOTT
Loretta didn't ask for much: just her legal right to a school she
could develop in. Yet that request brought her parents, like thousands of
others, to the brink of financial ruin and despair.
Consider, for a moment, that you are the parent of a small child
who is helpless in many ways, but is desperate to learn. You feel overwhelmed
with love and yet alarmed at the responsibility you now have towards this small
person. When he needs to go to school, you trust that a system will be in place
that will nurture, feed and challenge his developing brain. You look forward to
the person he will be. You hope he will find a place in the world, that he will
be happy.
Now imagine that you are the parent of a disabled child - a child
who was damaged at birth or who failed to develop normally. Parents who are
will tell you that you don't have less love or fewer dreams - if anything, you
hope for more. You hope that, with the right help, your child's brain might be
unlocked, a passion for music will be indulged, the joy of movement, however
limited, will be explored. You want your child to be helped to achieve the best
he can, to find his strengths and learn to cope with his weaknesses. The
national curriculum is drafted to enable each child to reach its targets. That
might mean three As at A-level or achieving head control in order to focus on
an object. Like every parent, you want your child's present and future to be
the best it can be.
There are approximately one in five (1.9m) children in England and
Wales with special educational needs (SEN), from the most profoundly disabled
to those who need some extra help in class. In Scotland the figure is 43,745
and in Northern Ireland it's 10,163. And we can expect these figures to rise.
There have been significant increases in the numbers of autistic children - as
many as 1 in 100 are now thought to be affected - and data from the Welsh
Assembly suggests an increase of 124% in the proportion of children with ASD
(autistic spectrum disorder) in Wales alone. The Office for National Statistics
admits that the true number of other severely disabled children has been
under-reported, leaving local authorities unable to plan for their care.
Currently, just over 3% of school-age children with serious
difficulties in England and Wales have statements - a document detailing the
kind of education and therapies they should receive (in Scotland a similar
document is called a record of need) - and the Department for Educational
Skills (DfES) estimates that £3.6 billion (15%) of the education budget
is spent on them. The law states that local education authorities have a
statutory duty to provide these children with whatever provision they need. But
it has long been known among parents that local council officers are often
complicit in denying disabled children therapies on the basis of cost, which
directly contravenes the 1996 Education Act.
Although parents have the right to challenge the council's
behaviour at a special-needs tribunal, they are often exhausted and in no
position to fight. Local education authorities (LEAs) know they will be
challenged only by a tiny minority of parents - those with the knowledge,
resources and confidence to stay the course. For the few who take on the stress
involved in appealing, a hundred others will fall by the wayside, unable to
cope with the time, potential expense and mind-numbing complexities of dealing
with council lawyers.
John Wright from the Independent Panel for Special Education
Advice (Ipsea) says the problem transcends national and political boundaries.
Last year it had 3,500 calls to its helpline; the counters on the phones showed
that thousands more failed to get through. 'We have calls from parents in
dispute with education authorities all over the country, and from Labour-,
Conservative- or SLD-controlled boroughs,' he says. 'I have personally
witnessed lying, evasion and dishonesty across the board, so we know
misrepresentation by local authorities goes on. The onus is placed on parents
to battle for their children's provision, and they are often faced with a
mountain of resistance from their local authority rather than help.'
Henry Spink is, in educational terms, PMLD - he has profound and
multiple learning difficulties. When Henry was born, he weighed 9lb and passed
all the postnatal tests, but as time went on he remained floppy and wouldn't
feed. His mother, Henrietta, knew that new babies don't usually sleep all day
and night. Henry simply never woke up. At three months, she took him to the
family GP, who waved a raisin in front of his eyes and announced: 'This child
is brain-damaged.'
For the parents of any disabled child, the path to acceptance is a
long one. The lack of clear answers is frustrating and yet keeps their hope
alive. Brain scans revealed that Henry's brain is completely normal. He is a
medical mystery. Many children are: their symptoms don't place them within the
parameters of any known syndrome. For most, the best diagnosis available is
'global developmental delay', a condition that is increasing year on year as
more children present with conditions that are not in the textbooks. Henry is
now 14. He can't walk unaided but he can crawl. He can't speak but he looks at
his mother with eyes so adoring that it is almost unbearable to see.Henry has a
brother, Freddie, born with half his diaphragm missing and severe internal
damage. He was on life support for the first six months of his life and has had
six operations to rebuild his oesophagus.
Now 11, Freddie is mobile and sometimes communicative but
profoundly autistic. He has stopped smearing faeces all over the walls of his
room, but he likes to shift furniture and books in the middle of the night. He
isn't completely continent and needs one-to-one attention. At six, he spoke for
the first time. He said: 'Mummy.' Henrietta had never heard a child of her own
say the word before. At nine, he suddenly walked. Nobody knows how far Freddie
can go or what he can achieve, but he's quick to learn and fascinated by
everything. The key to Freddie is constant input.
Henry is the image of his mother. He has blind sight, which means
that his brain and eyes are normal but the message from one isn't conveyed
properly to the other. But he knows where Henrietta is and seeks out her voice.
She sees Henry as full of potential but with the wiring in his brain messed up.
'It's all here. There is nothing missing. His body is normal but floppy. If
only we could discover how to switch him on.'
Sometimes Henrietta appears indomitable, up half the night with
the boys yet decorating the sitting room at 6am. At other times - say, during
the half-term break when she's been at home all day - she is utterly exhausted
by the drudgery of life with children for whom the world of normal childhood
things - homework, parties, friends for tea - is closed. She has few friends
who have more than one disabled child. 'If you have other, able-bodied
children, you have one foot in their world and one in the world of the
disabled. I have both feet in the world of disability and it is relentlessly
lonely. At times I feel I will sink without trace.'
For the past three years, Henrietta's life and that of her
husband, Michael, has been dominated by their battle with Wandsworth Borough
Council to gain what they see as appropriate care and education for their sons.
They have spent more than £15,000 on legal fees - money raised by
remortgaging their house - and lost six months' salary as Michael's business
drifted while they secured a place at a school of their choice for Henry, and
just 15 minutes' speech therapy a week for Freddie - something that is clearly
specified in his statement. The Spink family is a thorn in Wandsworth council's
flesh. The more brick walls Henrietta meets, the more she hammers. Letters are
drafted and sent. Politicians are canvassed. Media figures are drawn in and top
lawyers persuaded to take on her case pro bono (with no fee).
There are now 25 families who have serious complaints against
Wandsworth, and these will form a ground-breaking class action against the
council. They have instructed the solicitors Irwin Mitchell to apply to the
High Court to instigate a judicial review of Wandsworth, and to compel the
council to make the provisions listed in the children's statements. The legal
action covers children who have failed to have annual reviews, who have been
excluded from school owing to late or incomplete statements, or have never
received basic therapies. All families have the documents to prove they are
entitled to specific, basic provision that has never been delivered. All are
worn down by the acute stress and complexity of a system that makes resolving
their children's schooling problems a bitter emotional struggle.
Henrietta's love for her children is awesome. She believes
passionately that they deserve everything that can be obtained to enrich their
lives. Not a 'Rolls-Royce' service, as Wandsworth accused her of seeking. Just
the basics: the speech therapy for Freddie, who is desperate to talk, a session
of hydrotherapy for Henry. Services that Wandsworth's educational psychologist
assessed they needed, but which never materialised.
All children with special needs are assessed by an educational
psychologist employed by the council, who takes on board comments from other
professionals, such as doctors and therapists, and makes recommendations. By
law, all LEAs must state the provision that the child needs in part three of
his statement and quantify it, make it understandable and specific. But
alongside the new SEN Code of Practice approved by the House of Lords in
January 2002, the government issued fresh non-statutory guidance for LEAs. It
is called the SEN Toolkit, and it provides ways of making statements less
specific and more obtuse. The Code of Practice statement, 'A child's provision
should be quantified', is followed by a list of possible let-out clauses in the
Toolkit. 'Flexibility needs to be retained to meet the changing needs of the
child... or particular class or school arrangements'. The Toolkit is not
legislation, merely additional detail and recommendation. But given that the
Code of Practice is 210 pages long and the user-friendly Toolkit a mere 24
pages, it is inevitable that busy case officers will refer to the latter.
Ipsea is challenging the government in the High Court over advice
in the Toolkit. By giving LEAs the necessary loopholes to get out of providing
therapies and thus conserving their budgets, Ipsea's John Wright argues that
they are being induced to break the law. 'All local authorities have to
organise their spending, but their priorities are to fulfil their legal duties
first. What they must not do is downgrade a statutory duty to a discretionary
duty. To be cynical, if Princess Anne is visiting, they will very quickly find
£150,000 to smarten up the town hall. But if a disabled child is assessed
and found to need £300 worth of equipment, that is a major problem.'In
Scotland the position is even more confusing.
A bill is being drafted - the Education (Additional Support for
Learning) (Scotland) Bill - that could stop children's 'record of needs' being
legally enforceable. It would remove LEAs' duty to conduct professional
assessments of children's needs and their duty to provide. Instead, they would
be bound to 'ensure that additional support is provided for the child in so far
as they have the power to do so'. In other words, a child's provision will be
whatever an individual authority decides it can afford.
Henrietta insists she won't have her children betrayed further.
When Henry was 11, the Spinks chose Bedelsford School in Kingston, Surrey, for
Henry's secondary education. They were assured of a place, but Wandsworth
turned them down on the basis of cost. It also changed the wording on Henry's
statement to make him appear better suited to Paddock, the in-borough school of
the LEA's choice. Then the issuing of Henry's final statement was delayed from
the statutory eight weeks to 22 weeks, meaning that he was left without a
school at the start of term. By then, looking after Henry at home while also
coping with a desperately ill Freddie, the Spinks waited for their case to be
heard by a special-needs tribunal that took place in October 2000. The Spinks
hired a barrister and spent £5,000 on independent educational reports.
They lost.
Wandsworth education officers maintained that Paddock was the
right environment for Henry. The cost per annum, they argued, was £14,000
for Bedelsford and £10,096 for Paddock. The tribunal accepted their
figures. Bizarrely, in reissuing Henry's statement, Wandsworth had assessed
Henry as having SLD, severe learning difficulties, instead of PMLD, profound
and multiple learning difficulties, which he has.
Also, all the specific therapies he needs had been written out.
The Spinks listened, aghast, as the Wandsworth officers presented their
case.
Asked about the soft playroom Henry would need as part of his
sensory education - his statement specified weekly access - they replied that
Paddock had a soft playroom. It didn't, but it had access to one at another
school. When pressed, they admitted that Henry's class would not have access to
it. Similarly, a sensory garden was described that did not exist. At appeal,
the Spinks provided pictures of bare tarmac to prove it.
Through superhuman perseverance and attention to detail, the
Spinks managed to obtain the true costs of the two schools to prove that it was
cheaper for Henry to attend Bedelsford than Paddock. Children with special
needs are banded one to five; in reclassifying Henry as SLD instead of PMLD,
Wandsworth had dropped him down a band and thus fudged the true costs. The
appeal tribunal accepted the Spinks' calculations, which represented a complete
reversal of the figures. To educate Henry at Paddock would cost £12,534,
and at Bedelsford, £9,646. On February 6, 2001, the Spinks won their
appeal and, happily, Henry now attends Bedelsford, a school with reasonable
facilities and on-site physio and speech therapists.
Because this was a special-needs tribunal, the Spinks, though
vindicated, were advised that it was almost impossible to claim costs against
Wandsworth. The Council on Tribunals describes this as 'a power we use very
sparingly'. There are no statistics on costs, but a spokesman says: 'We suspect
there have been no more than 20 awards of costs by the tribunal.' Neither can
they complain or appeal for disciplinary action to be taken against its
officers, because there is nobody to complain to. It is outside the local
government ombudsman's remit: according to his own legislation, written by Sir
Peter Baldwin in 1965, he cannot become involved in a case that has already
gone to tribunal.
It is a clear gap in the law that leaves the Spinks angry,
frustrated and much the poorer. Henrietta believes this is a discrimination
issue. As a Catholic with spiritual leanings, she believes this might even be
the reason her boys were born. It makes her a formidable force, a mother full
of fury, on a mission to validate her children's lives.
Her children are among the 1,032 children with statements of
special needs in Wandsworth - an LEA that appears no better or worse at dealing
with special needs than most in the country. According to the 1996 Education
Act, parents of disabled children, like those of their able-bodied peers, have
the right to send them to the school of their choice, with the proviso that the
school must represent an 'efficient use of resources'. If parents disagree with
the council's final decision, they have the right to appeal at tribunal.
Parents are the only people who can appeal to the tribunal, and
yet most parents are unaware of the law or their rights. Figures are not
available for individual boroughs, but of the 3,445 parents who last year found
the strength and financial resources to fight local councils' decisions, 79%
won their cases. The figures don't include the high numbers of parents who also
win their cases when LEAs agree to settle just before the tribunal hearing.
The Spinks' case wound its unerring way to tribunal via sheaves of
correspondence, obtained under the Data Protection Act. Letters from the Spinks
to Wandsworth, from Wandsworth to the Spinks. From the Battersea MP, Martin
Linton, to Wandsworth's deputy director of education, Mary Evans. From the
chairman of the education committee, Malcolm Grimston, to Bert Massie, chairman
of the Disability Rights Commission, and from Massie to the leader of the
council, Edward Lister. From Sir Michael Bichard, then permanent secretary of
the DfEE, to the council's chief executive, Gerald Jones. And finally from
Grimston to the Spinks, requesting they channel all correspondence through
lawyers, thus banning them from further contact with his officers.
After the Spinks won their case, an embarrassed Councillor
Grimston appeared on their doorstep. 'He kept asking, 'Why?'' recalls
Henrietta. 'He seemed baffled in spite of the fact that half a dozen other
families were writing to him to complain about the behaviour of his officers at
the same time.' Which raises the question: do senior members of Wandsworth
council - and many other councils - know what their education officers are
doing in their name? Is this, as the Spinks would have it, a cynical policy or
simply a catalogue of errors?
'I see only dedicated people who are trying their best,' insists
Grimston. 'You are giving the impression that there is a group within my
authority deliberately going against the council's policy and aiming to do the
youngsters harm. But I resent that implication. What I see is the strain that
allegations like this place on members of staff and the effect on sickness
levels, which means we have even fewer people to do the job properly.'
Bert Massie of the Disability Rights Commission takes a different
position: 'Years ago, a statement of special needs meant precisely what it
said. It stated the precise needs of the individual child, which the local
authority was duly expected to meet. Now, everything is resource-led. In the
Spinks' case, Wandsworth recategorised a child so that they could send him to a
local school for children with severe learning difficulties instead of one more
appropriate to his needs. They made an amazing series of errors, and it seems
incomprehensible no one spotted them sooner.'
At present, there is no national system in place to bridge the
gaps between children's legal entitlements and confused LEA funding of special
educational needs. 'Legally, local authorities are bound to meet children's
needs, which implies a budget without a cap,' says Ipsea's John Wright. 'In
reality all education departments work within a budget. This means there is an
inherent conflict. Clearly there are people whose priority are figures rather
than children. I've spoken to education officers whose remit is simply to cut
costs. They may attempt to persuade the psychologist not to include specific
provisions in a child's statement. Often it's a case of 'It's your job to
describe the child's needs, and ours as an authority to decide on the provision
to meet them.' This is against the law. There are also decent people doing this
job who must find it hard to sleep at night because they're faced with an
impossible task. They cannot put their hands on the resources, so they have to
either deliberately minimise the child's needs or lie to the parents about the
provision available.'
Bernadette Keeffe is one of the parents seeking a judicial review
of Wandsworth. She hasn't had a full night's sleep since her son, Alexander,
now 6, was born. He was diagnosed with ASD (autistic spectrum disorder) at
four, and has a complex psychological profile: he has a performance IQ of 141
and a verbal IQ of 81. Alex has never attended school. He has a reading age of
around nine. He can read the speech bubbles in his Beano with feeling, yet he
has no idea how to say to another child: 'Hello, I'm Alex.' He speaks
idiosyncratically, using phrases he has learnt from books. Adults think he's
cute; other children just think he's weird. They don't bully him, they simply
exclude him. 'The joy of childhood is to have friends, to mix, to play,' says
Bernadette. 'Alex cannot do those things.' The local primary has so far failed
to accept him.
Experts in autism agree that without early intervention, the gap
between Alex and his peers will continue to widen. Alex's final statement did
not arrive until six months after his draft, making the statement a year old at
Tribunal. Twice a week Bernadette travelled two hours by public transport to a
specialist educational establishment in Surrey and paid the £100-per-week
fees herself with money she'd borrowed. When his statement finally came, in May
last year, after four different drafts, it specified ABA - applied behaviour
analysis - and a one-to-one home-based programme for Alex 'due to lack of
alternative autistic provision within the borough'. Because ABA was written
into part four of his statement rather than part three, and was therefore not
legally enforceable, there was no guarantee it would continue to be funded. In
July 2002, Bernadette appealed to tribunal against parts two, three and four of
his statement as being vague, inaccurate and misleading. She won her case, and
Alex's ABA is now in part three. 'The lack of trust between parents and the LEA
is so profound, you cannot take anything at face value,' says Bernadette. 'What
looks on the surface like good news may contain a legal loophole. In taking
something away and forcing you back to tribunal, the borough saves nine months
of fees, and to hell with the emotional cost to parents and children.'
A tiny room at the back of Bernadette's chaotic flat is piled high
with files. She learnt the SEN Code of Practice and the Education Act while
coping with Alex, his problems and her own epilepsy. 'I prepared all the
tribunal case notes myself because I couldn't afford a solicitor, and I was
being bombarded by letters from Wandsworth changing this and that, yet refusing
to meet me for resolution. The weekend before the tribunal, I was still
preparing case notes at midnight.' Mentally and physically exhausted, she
collapsed at her computer, and police and paramedics had to break into the flat
to take her to hospital.
In January, Bernadette heard that Wandsworth is now preparing to
take her to the High Court to get the tribunal's decision reversed. Her tears
are not for herself, but for her son. 'Alex has so much potential, but if
Wandsworth continue to grind down my fighting spirit, they will destroy him
too.' As I leave, she asks: 'Can you find out why they're doing this to us?'
I get no response to her question from Paul Robinson, Wandsworth's
head of education, but a spokesman explains: 'It is a point of law. The
tribunal got it wrong. Alex's ABA should never have been written into section
three. It belongs in section four. We have to follow correct procedure and we
cannot allow this case to set a precedent.' Alex, he assures me, will continue
to get his ABA.
Bernadette used the Data Protection Act to access all the
paperwork concerning her case, and discovered that Wandsworth had considered
only giving Alex ABA as an interim measure. Scrawled across one document are
handwritten sums working out how much could be saved by funding only 38 weeks
of Alex's ABA as opposed to 52.
The experience of other parents confirms that where cost is an
issue, LEAs often either restrict the length of time they will fund specific
provision or attempt to make divisions within the system. Case meetings that
are meant to be about children's needs turn into bun fights, with people from
different departments arguing over who will pick up the tab. The delay in
issuing statements, which is baffling for parents, simply means that the cost
of provision can be shunted into the next financial year. Following the first
investigation into SEN in 1992, the chair of the National Audit Commission
commented that LEAs use delay in special-education procedures as a
budgetary-control mechanism. Nobody anywhere, it seems, is thinking of the
long-term future of the child.
There are stark reminders of those the system has failed. On
September 18, 2001, Helen Rogan, 38, gathered her autistic 11-year-old son,
Mark, in her arms and jumped off the Hownsgill Viaduct in County Durham. It was
the last, desperate act of a mother utterly unable to cope. Mark's time in a
mainstream primary school had been short and traumatic. He couldn't manage and
neither could his teachers. Residential school was discussed, but Helen would
have had to pay half the fees. Ground down by the endless struggle to find the
right help and education for Mark, their lives had become hopeless beyond
endurance. More than a decade earlier, a 17-year-old boy had thrown himself off
Westminster Bridge, killing himself. He'd also had a statement of special needs
issued by Durham LEA, yet he hadn't received all the help he was entitled to.
The case was investigated by the ombudsman, and Durham gave firm assurance that
it would review its procedures.
The government is committed to inclusion - and yet schools
continue to display a reluctance to admit and a readiness to exclude children
with severe problems. A recent Audit Commission report that investigated half
of all LEAs in England and Wales found that children with special needs account
for the majority of permanent exclusions from school - 87% at primary level and
60% in secondary schools. What happens to these children nobody knows - there
are no useful statistics available. We have no quantitative information about
the number, type, severity and combination of their difficulties, or the extent
of social exclusion among their families. Children with special needs are not
even included in national performance tables.
Twenty per cent of Ipsea's casework involves children who end up
out of school long-term. The strain on their families is unimaginable. John
Wright would like to see a number of changes to the system, but he is not
sanguine about the kind of improvements he envisages in the future, because
provision for the disabled simply isn't a priority for anyone in government.
'As long as the duty to assess and describe the provision of special needs
falls on the same body that also has to pay, there will be a fundamental
conflict of interests,' he says. 'These two areas need separating, and that
suggestion has been made to the government but it has fallen on deaf ears. The
law is being broken as a matter of course - yet no one seems to want to
challenge that situation.'
The authors of Disabled Children in Britain, the first detailed
analysis of disability in Britain since 1984, conclude: 'Disabled children are
one of the most vulnerable groups in society yet we have less statistical
information about them than any other group, including the homeless. If the
government's rhetoric about the importance of combating poverty and social
exclusion is to be realised, then this scandalous lack of basic information
will have to be made good.'
The National Audit Commission report recommended that the
government should establish a high-level review to consider options for future
reform. In particular, it drew attention to the need for more effort to be made
to engage meaningfully with parents and the need to create a non-adversarial
system, removing the tension that exists between LEAs, parents and schools.
Currently, there is no minister for disability. SEN is part of the portfolio of
Baroness Ashton, parliamentary undersecretary of state for Sure Start. Despite
numerous attempts to contact her, she remained unavailable for comment.
Imagine now that your disabled child is growing up fast. You're
worried about his future, how he will cope when you're not there. You may have
already spent 10 or 15 years in the system, fighting every step of the way for
what little provision you have gained. You are alone. You are invisible. You
have no voice at all. You know you have been lied to, given misinformation, a
second- rate service. And yet there will be no criminal complaints procedure,
no redress. If you do get up the strength to shout, to complain about what is
being done, who do you think is going to hear? And more importantly, who do you
think cares? |
Reprinted by kind permission of The Sunday
Times Magazine |