These families deserve more

Aug 12 • Featured • 816 Views • 9 Comments on These families deserve more

Yesterday I was talking to a mum whose nine-year-old daughter has autism. She has been in a mainstream school since she was five, but lately she has started to retreat further and further into her own world as she starts to feel increasingly isolated from her classmates. She has also been badly bullied.

So what's the school's solution? To help her become more integrated, to encourage the other kids to be more friendly and understanding? You'd think (hope) so… but no. Towards the end of last term, the Headteacher of this high-achieving primary told the little girl's mum there was nothing more they could do for her there, and she would be better off in a school for children with special needs.

'I was devastated,' her mum told me. 'There are only two schools for children with special needs in the Borough, and they really cater for children with severe physical disabilities, not autism. I don't know what to do. And I'm angry – I feel they don't want her there because they're so obsessed with the league tables.'

Meanwhile a good friend whose wonderful seven-year-old daughter was born with an extremely rare genetic disorder has had to fight for every crumb of help they've been given by their local authority (they had to wait two years for a walking frame). Yet this summer she was told there was no room for her little girl on a playscheme for children with special needs.

It seems so wrong to me that in 2009 parents of children with special needs should still have to fight so hard for any support, assistance and understanding they are given. The ludicrous 'one size fits all' approach taken by many local authorities is hopelessly outdated.

There is some good news. On 3 August it was announced that school inspections will have to focus on the quality of provision for children with SEN and disabilities

Let's face it, it's long overdue.

written by Liz Jarvis


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9 Responses to These families deserve more

  1. Caroline says:

    Interestingly, I have the opposite experience of provision for people with special needs. My nine year old niece has mild cerebral palsy in her legs, and is in mainstream school. She has been ‘statemented’ by the Local Authority and has a personal Teaching Assistant solely for her at breaks and lunchtime to help her get around (she can walk, and isn’t wheelchair bound). She is soon having an operatoin on her legs which will necessitate her being off school for around six weeks, and the LEA is providing a home tutor every single day while she’s off school. The family has a free car through the Motability scheme (although they had a perfectly good car already before they were awarded this), and get a new free car every three years. Everything paid for except petrol (ie road tax, insurance, servicing). The family have tapped into numerous charities for more help and most recently had a holiday paid for to Turkey. I’m sure this isn’t everybody’s experience, but the parents of this child are very good at knowing how to work the system to their advantage. And obviously, provision for SEN children can differ from area to area, I’m sure. And I don’t disagree at all, the system definitely needs an overhaul.

  2. Sam says:

    There is so much to be done in this area it beggars belief. I know of a family who have fought for 40 years to get the right kind of support for their child who was vaccine damaged (miraculously medical notes pertaining to her case were lost!). Finally after all these years and a mighty legal battle they have won the right to choose a home – out of what little is available – that is most appropriate for their child’s needs. But she has become so used to being waited on hand and foot by her parents, that the fear is now not only in how this sudden change will affect her, but also as to how her parents will adjust in their retirement with her no longer around. The change has came about out of sheer necessity following a near fatal incident, which is becoming more imminent the older her parents get. They should never have had to fight so hard for so long for little more than a little normality in their lives – like being able to see their grandchildren, go to the shops, or the cinema, or just a family meal out. The system must change.

  3. grit says:

    you can deduce from what you’ve written that some parents in this situation throw up their hands at the local authority and start home educating, where they can provide an individual, personalised education for their child. the home ed world is remarkably free from bullying, since children here are largely learning in a non-coercive environment. it’s also a wider, more relaxed and more comfortable social experience – my children have to work with many others with different dis/abilities and needs – possibly a greater range of different behaviours than they would really meet at school, which as you say, is one size fits all..

  4. Hot Cross Mum says:

    Hi Liz. Just wanted to say thanks for ‘popping’ in to my blog recently. You have a great site here. That’s such an absurd situation you describe and I feel so frustrated for the parents. I cannot imagine how tough this is for them.

  5. Bev says:

    I’m sure all authorities are different and I know from a friend how hard it can be to get the help needed. What infuriates me even more is when other parents suggest that a mainstream school isn’t the best place – how would they know. In my view parents, and their children, should offer support to those who may need that little extra help, they may be surprised how much they can do, even a smile goes a long way. Isn’t that what helps the world go round?!

  6. nixdminx says:

    This is a familiar tale, I have an autistic brother who was in a special needs school, followed by weekly boarding at a specialist centre for autistic children until the age of 16 when he transferred to the local college. He was bullied for his lunch money and became very disturbed, he damaged his back there and was in a wheelchair for a year until he had major surgery. My Mother kept him at home from then onwards and he now lives happily in sheltered housing. I think the services have gone backwards rather than forwards and it is only thanks to tireless charity campaigners or those in government with personal / close family experience of these type of conditions that can effect change.

  7. alison says:

    I have been fighting for 5 years for my SNK(special need kid). She had recently been diagnosed with Autism/Aspergers. She has had a full statement for all this time, however her primary school have so far refused certain things on it as it cost too much. She has had terrible problems with friendship issues and being bullied. She is now in her last year at primary and we are just begining the fight for special school. We do however have the problem that our local authority put all children no matter what their needs into 1 school. Why is this, well its money off course. How well we she cope with distruptive behavior, why does she have to be classed as the same as those with sensory, or physical needs etc. Is this a really fair choice for our children.

  8. Liz says:

    My heart goes out to you Alison. It is grossly unfair – all children deserve an education that caters to their needs.

  9. Sam C says:

    Hi Liz, you know how I feel about this! x


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