US child expert quits Britain over 'hidden crisis' in special needs

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US child expert quits Britain over 'hidden crisis' in special needs

_http://observer.guardian.co.uk/uk_news/story/0,,1833449,00.html_

(http://observer.guardian.co.uk/uk_news/story/0,,1833449,00.html)

An Observer story triggered an NHS doctor's decision to speak out on

discrimination against vulnerable pupils - and to return home early

Anushka Asthana

Sunday July 30, 2006

_The Observer_ (http://www.observer.co.uk/)

'It was always my intention eventually to return home to the United

States,

but I'm going years early because in all conscience I can no longer

participate in a corrupt and dysfunctional system that is dishonest

in its treatment

and management of children with special needs.'

Janis Newcomen throws her hands in the air in exasperation. She is

part of a

system that is supposed to provide for the needs of Britain's most

vulnerable

children, those with conditions such as autism, Attention Deficit

Hyperactivity Disorder and severe learning difficulties. But she has

had enough.

In seven years as an NHS neuropsychologist, Newcomen has been so

disgusted

and upset by what she has seen that she is packing her bags and

walking away.

She says she can no longer bear to watch children and their families

let down

again and again. As a specialist who is supposed to provide help she

says

that she feels 'handcuffed', forced to accept hidden waiting lists,

discrimination and constant cost cutting. She says she is officially

prevented from

making recommendations that could safeguard children's futures.

'The system is in crisis,' she said. 'But it is like the emperor's

new

clothes - nobody is willing to tell the truth.'

Recent research has revealed that autism and associated behaviour

disorders

among children are far more prevalent than was previously thought.

The debate

over whether such pupils should be taught in mainstream or special

schools

has also been reignited by reports that the present government

policy, which

leans towards inclusion, is not working properly.

Researchers who studied 56,946 children in south London found that

almost 0.4

per cent had 'classic' childhood autism and just below 1.2 per cent

had

autism spectrum disorders, including Asperger's syndrome and milder

forms.

Until the Nineties, the generally accepted figure in Britain was

four to five

cases of autism per 10,000 people - 10 times lower than the rate

suggested

in the new study.

It was an Observer investigation last May that triggered Newcomen's

decision

to speak out. She found the story of parents struggling to get their

children's needs assessed and met by local education authorities and

schools

depressingly familiar. Now, as she prepares to leave her job at the

Sussex

Partnership NHS Trust, she no longer fears the consequences.

Newcomen talked from her office in Hastings, East Sussex, where she

carries

out specialist assessments and diagnostic work mainly with autistic

children.

Parents of such pupils experience an ordeal: 'If you have a child

[with

special educational needs], it is like Russian roulette. If you are

passive, you

could be waiting years, but if you have a loud voice you will be

seen.'

It is wrong, she argues, that so many of the children she sees have

been

excluded from school because of behaviour directly related to their

condition,

which they have no control over. 'There are federal laws against

that in the US

- if it is not discrimination, I don't know what it is.'

Moreover, it will cause serious damage in the long run as children

are

brought up to feel like failures, she argues. 'We are excluding

these children

from primary school. What sort of message does that give? We are

excluding them

from school, from society, from having any existence.

'I think we [health practitioners] are handcuffed: we see the

problems but

are not able to help.'

Newcomen, 55, believes the school environment has a huge impact on

vulnerable

children's lives. Many autistic children she sees are being harmed

because

they are taught in large classes in busy, mainstream schools, she

said. Yet

there is nothing she can do: she is not allowed to recommend that

they be

moved, even if she thinks it could transform their behaviour and

make life far

easier for their parents.

'All we can do is provide information. We cannot say the child would

benefit

from a special school. We cannot make recommendations.' As an NHS

worker, she

said, any suggestions about where a child should be schooled would

be met

with anger from the local education authority.

There has long been a national debate about inclusion - whether to

teach

children in mainstream or special schools. Proponents say that with

enough

adjustments any child can be accommodated in the mainstream. Others

say there is

too little money to make this a practical reality for all children,

and some

pupils - particularly those with severe behavioural difficulties -

benefit from

smaller class sizes and more intense support in a special school.

While the government denies it has a policy of inclusion, a damning

House of

Commons select committee report published this month disagreed. The

MPs said

the present provision was not 'fit for purpose' and that inclusion

was the

message the government was sending to the local authorities.

It is certainly the message that has reached Newcomen and her

colleagues. 'We

are told the goal is inclusion and the goal is not to statement

[issue an

analysis of the child's needs with costs attached], because that

needs extra

money.'

The results are devastating, she argued. 'It is perfectly possible

for an

autistic child to be happy and well adjusted. They do not have to be

violent and

unhappy.' She believes inclusion could work well if every school was

properly resourced, but under current conditions three out of four

of the autistic

children she sees would benefit from a place in a special school.

She believes that health workers are stymied because cost, rather

than

clinical need, drives everything. 'You are trying to work with

families with

incredible distress, and no one seems to care as long as the boxes

are ticked.'

One tick-box is to see children for a one-off appointment quickly so

the

figures on how long they have to wait stay low. According to

Newcomen,

paediatricians are expected to make a diagnosis and then send the

family away with a

brochure and a telephone number for the National Autistic Society.

They are

often not given repeat sessions, even when the doctors think these

are needed.

Those who are given more sessions are placed on a second, much

longer,

waiting list which, she says, is 'kept secret'.

Ideally, families would get quarterly therapy sessions on how to

understand

and cope with their child's behaviour, said Newcomen, but they are

not getting

that support. She helps by running her own independent clinic

offering it to

families on a one-off basis. 'I go home at night to peace and

quiet,' she

said. 'These parents never have any downtime and it can have a

destructive

impact on siblings.'

It is the endless list of patients who have been failed by the

system that

angers her most. One mother she has worked with has a son who is

autistic and

can be dangerous. 'The mother has warned the school, but a statement

has been

turned down again and again. We are not allowed to say he needs a

statement.

Instead a mysterious panel has decided to reject that child, and he

has no

place in a special school.'

But Newcomen points out that because the boy's autism means he can

be

extremely violent he is not able to go to his school full time. 'How

can his needs

be being met in mainstream if he can't go in for a full day? His

mother is

now out of work [so that she can look after him], so they have lost

money. He is

being discriminated against. He is not being educated because of his

disability. It is heartbreaking.'

At least he got a diagnosis early. Newcomen regularly sees patients

in their

mid-teens who are profoundly disabled but have gone through the

system with

no one ever noticing it. A 15-year-old girl referred to her had been

running

away, stealing and taking drugs. Newcomen assessed her as having

severe

learning disabilities. 'Her cognitive ability was extremely low -

99.9 per cent of

the population score higher. That put a completely different slant

on her

behaviour.'

In fact, failure to help these children will lead to massive social

problems,

according to Newcomen. Without the right support, many could go on

to behave

antisocially and aggressively. The choice, she says, is: 'Invest now

or

build prisons later.'

Yet investing is the last thing NHS managers want to do, in her

eyes. It took

her months to get approval to buy a £135 diagnostic testing kit. She

had to

make presentations to a committee and a 'user group'. 'Asking for

new

equipment is agony and it made me think twice about ever asking

again. Everyone is

stretched like a rubber band and it is going to snap.'

Newcomen is clear that the fault does not lie with clinicians or

teachers who

she 'has nothing but admiration for'. But everyone is struggling: 'I

feel

awful. I can't provide the support. We diagnose and send them to an

environment

that will harm their needs.' It is the parents who get the fallout,

she

adds.

'I am frustrated. There is a discrepancy between what you hear the

government

say - that everything is wonderful - and what you see.' It is this

daily

reality that has pushed Newcomen to leave the UK.

She says she is not alone. She hears 'moaning, anger and

frustration' from

colleagues who also talk about resigning from their jobs. For her,

there is

nothing more she can do: 'I am feeling low on energy, very drained

and

hopeless.' Working in the NHS, trying to help the children who most

need it, has

become 'soul-destroying', she said.

That is why, on 27 August, she will travel with her husband to

Southampton

and board the Queen 2 to sail back to land.