Labour fringe - Creating a joined-up future for disabled children
Wed, 01 Oct 03 DeHavilland Report - Event
Summary
Jane Asher, president of the National Autistic Society (NAS), today stated that now is the time to get to the 'nitty, gritty' of helping children that are autistic.
She was commenting during the 'Creating a joined up future for disabled children' fringe meeting, which was held by NAS and the Parents Autism Campaign for Education (PACE) at the annual Labour Party conference.
Ms Asher explained that during her experience of working with and for people who are autism she has witnessed some 'disturbing and depressing' times.
She appeared optimistic that such experiences are in the past as she commented; 'now I see real hope on the horizon.'
However, she pointed to the frustration parents and other campaigners feel in that the 'tools, knowledge and objectives are in place' for tackling the problems in services for autistic children, yet the way forward has not been identified.
Ms Asher highlighted the fact that 'three very important reports have been published today.'
The reports come from NAS, PACE and Peach; and all reports relate to the Special Educational Needs and Disability Tribunal (SENDIST).
Ms Asher called for solutions to end the 'ongoing, unfolding tragedy.'
The writer, Nick Hornby, was present to talk about the issue from the perspective of a parent of an autistic child.
Before discussing his son Danny's situation, Mr Hornby highlighted that the expert on his son is actually Danny's mother.
Mr Hornby reported that over the past five months Danny has seen four doctors, eight teachers, three psychologists and two other healthcare professionals - '17 in all.'
'So I can't complain about the attention he's getting.'
However, he pointed to the fact that somebody needs to co-ordinate Danny's care given the number of people he has to see and revealed, 'At the moment, the reality is that Danny's key worker is his mother.'
Mr Hornby highlighted one of the key problems with services for autistic children - 'there is no-one to help you negotiate' to get the care a child needs.
'Danny's mum knows more about his medical needs than his GP and more about his educational needs than the LEA.'
However, he reported that the family are fortunate, in that they are 'well off' and so can afford to pay for the services that Danny needs.
Commenting on the debate surrounding the MMR vaccine and the possible link with autism, he said, 'some of us don't care whether there is a link or not'. He explained that parents are more concerned about getting the support their children need.
Again, he told the audience that he is lucky in that he has access to people like Professor Wakefield - who proposed the link between the MMR jab and autism.
He stated that it is outrageous that, at a Labour Party conference, he was discussing the fact that it takes 'connections and money to get competent treatment.'
Mr Hornby pointed to the lack of school places available for autistic children and the fact that only one in five teachers in schools that have places for autistic children had undergone any specific training.
He cited the latter statistic as a 'marker' for the lack of provision across the board for autistic children.
He reiterated the fact that his family has been lucky in that it has been able to 'fill the gap' when the services that are supposed to help his son have been insufficient.
Commenting on SENDIST, Mr Hornby asserted that many LEAs settle disputes at the 'eleventh hour' as a way of delaying resolution.
He explained that he was shocked to find that the current system is one where healthcare professionals are deemed to be the 'enemy' and a barrier to treatment and services, by parents.
While he stressed that it is not his view that the people in these roles have bad intensions, he argued they are 'forced by circumstances beyond their control to become gatekeepers.'
He added, they 'think about the minimum rather than the maximum' in terms of what services they can provide.
Mr Hornby argued that adequate funding would resolve these issues.
Using speech therapy as an example of a service that many are denied, he stressed the importance of ensuring children have access to speech therapists so that they can do things others take for granted, like say their name.
'It isn't an optional, self indulgent extra.'
Mr Hornby asserted that without adequate funding, other measures such as adopting a joined up approach would be worthless.
He also called for action stating, 'these kids need more than promises.'
Margaret Hodge, Minister for Children, commented: 'I wish Nick was right, I wish you were half right.'
'I think it is more complicated' than an issue about more resources.
'We have increased funding' she said, but conceded, 'it's not enough, it's never enough.'
Ms Hodge asserted that she is keen to invest more resources but stressed that it would be futile unless there is a 'will to pay more taxes'.
She sought to remind delegates that the Labour Party had inherited a bad legacy from the Conservative government.
The Minister explained that the Government is trying to 'build up an infrastructure' that will enable it to respond to the needs of autistic children.
She urged patience, maintaining that it would not happen 'overnight'.
Ms Hodge said: 'all we can do is try and build services carefully.'
She reported that the knowledge and understanding of the issues relating to autistic children has 'increased so rapidly'.
So much so that autism can now be recognised in children as young as two or three, depending on where they are on the spectrum, the Minister reported.
However, 'With the best will in the world, it will take us time.'
Ms Hodge recalled that at the time she was helping develop the Sure Start scheme the understanding and ability to recognise autism was very poor.
She acknowledged: 'even today 75 per cent of teachers don't feel equipped' to identify the condition.
However, she took heart from the fact that autism can now be recognised and stated, 'we will move in that direction.'
With reference to SENDIST, Ms Hodge commented, 'I think getting to a tribunal is a failure' adding that problems should be picked up and resolved a lot earlier in the process.
The Minister made a plea, 'Give us time, work with us.'
She explained that the Government's vision is to break down the boundaries that are perceived to exist between professionals.
'I think that's a very tough agenda.'
Ms Hodge acknowledged that professionals are comfortable when working in their own environments and that the Government is asking them to breakdown barriers.
She said: 'I do see it as one of the routes through.'
The Minister advocated a partnership approach and stressed the importance of ensuring that the 'child's voice is heard right the way through' the system.
Ms Hodge conceded: 'In the end we've got to rebuild the trust you say we don't have.'
She accepted that the problems partly relate to gate keeping and also to resources.
'Join us in an attempt to get a better deal, our will is there to get a better deal.'
Ms Hodge added: 'Every child has got potential, it is our job to ensure that potential is achieved.'