As much as there are highs and lows in caring for a child with any Autistic Spectrum Disorder (ASD), the lows never get quite as low as when dealing with local government.
My dear monkey finds himself quite lucky in Cornwall as since 2005, he has been entitled to respite once a fortnight at a fantastic County Council run provision for children under-12 with ASDs. He attends with a high-functioning group of children and enjoys his stays there. As a carer, it provides me with one full night of sleep a fortnight and a break which I can't have otherwise.
Yes, we are both lucky. Or shall I say, we were lucky.
From 2005, after our needs were assesed, this service and transport to and from was funded by the Learning Disabilities budget, however the reshuffle of Social Services post-Victoria Climbie meant that his services were funded by the 'Children with Disabilities' Team from 2006. And now, I've found out that from 1 April 2007, funding will be provided by 'Children Young People and Families'. They have decided that from 1 May, they are unable to fund transport for my monkey.
As a child with aspergers, surely he has a disability - after all, he's entitled to Disability Living Allowance and he requires a teaching assistant to enable him to attend mainstream education. However, children with disabilities has a cut-off IQ of 70. Yes, 70.
Now, I've met kids with cerebral palsy and all sorts who have IQs higher than that - are we saying that they fall within the box called 'normal' and have no needs?
As a child living within 'the poverty zone', my monkey is counted on the government list as a 'child in need' which means that "Children Young People and Families" are duty-bound to look after him...
As a carer, I've been assessed as being entitled to funding for respite...
But they have cut the service - without a reason. I pressed for a reason and was given NONE. I
asked if it was budget constraints, asked if they wanted to free up much-needed space at the respite facility...but they could not give me an answer. The assessments say he needs this service - so why make it impossible for us to get it?
I'm ringing our MP today as well as filing a complaint as I'm fed up with saying 'unfortunately my son's IQ is not below 70' - which I don't mean but feel I must say in these circumstances. At the moment, I am thankful every day that we have been blessed by Monkey's high-level of communication, reasoning and his ability to work within the 'mainstream' with help. There is the potential that my monkey will be able to function within society as an adult and perhaps even live independently.
However, not only our rights, but our futures are being determined by this decision.
I am a non-driver, however I do receive mobility payments for us to use for this sort of situation. I can afford the £20 taxi fare each fortnight - however - I can't book this taxi as legally. Taxi drivers cannot take children under the age of 12 unaccompanied unless it has been arranged with Social Services, Education or Health.
If Monkey had a low IQ or if there were child abuse allegations, I would have this service without question. While I do understand the need for protective measures, what about preventative measures and well, appreciating the needs of all clients?
I'm taking a stance for Aspergers here as this is not the first time that an Aspergers child has fallen into the funding pit. I've heard many off-the-record cases from far too many sources.
Legally, rights are being denied and I fear that Social Services are not only setting themselves up for a legal minefield, but are, more importantly, letting the service user down.
Has anyone else experienced the Asperger's funding trap? If so, let me know and comment!
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