Friday, 13 May 2011

Family vow to battle for autistic son
A Jersey family is fighting for funding so their autistic son can go to a specialist school.

21-year-old Martin Bellows suffers from a severe form of autism, which his parents say has got worse since he left school.

They are intent on finding a better life for him in the UK. But the authorities here say there's no need as the facilities for autism sufferers on the island are of a very high standard.

Martin's family disagree.

Their son has only ever spoken a few words due to his severe autism, but now he doesn't speak any, and hasn't done so for four years.

His parents say he would benefit from day to day further education in the UK, something that's not available in Jersey.

Mum Angela and step dad Mark have a place lined up for Martin this September at a college in the UK but can't accept, because the authorities in Jersey won't pay for him to go, despite it potentially working out cheaper than him staying in Jersey.

Mark said: "He is a Jersey born person, he is Jersey, his passport says Jersey, he's from this island. They have a responsibility to look after him, he's part of their culture. They don't care about him. As far as they're concerned, he can go to England - another one they don't have to bother with, another one they don't have to fund. But they are wrong. They are going to fund it, it will be my life's work to make sure they do it."

Martin's stopped going to the day centre on the island that cares for autism sufferers because he's not progressing, according to Angela and Mark, and often not mixing with people his own age.

Social Services completely refute the claims made about the day centre, insisting facilities are of a high standard, have improved significantly over the last few years and there's no need for autism sufferers to go anywhere else.

Mark McQuillan spoke to autism expert Phil Le Claire and began by asking him what precedent it would set for Jersey by paying for Martin to study in the UK.
The States does not do enough, and they have an underspend this year of millions. As Philip Le Claire says in the second part of this interview, it is in the long term an expense on the State, because carers become so disillusioned, worn down and depressed that they end up not only being unable to care for handicapped adults, but themselves needing therapeutic and medical care. And as not mentioned by Philip in the text, but in the interview, there are not that many cases like Martin anyway.

If he'd been abused, of course, like the recent proposition brought by Paul Le Clare for family X, the States would provide money. As it is he had been cared for by people who are reaching the end of their tether because they have tried to do what is right for him because they care.

The States just like care on the cheap, and as long as they can provide just enough to keep carers going, just a little bit, that's all they give. And if marriages fail, as mine did, that's just tough - it's the social services version of collateral damage in wartime, an acceptable hazard.

The States spokesperson in this interview doesn't discuss the issue which I know weighs heavily on carers, especially as they approach late middle age, in their fifties. What will become of the adult they care for after they are gone?

This issue is always avoided by the authorities, and an ostrich mentality ensues - they know there will be a cost involved them, of providing full time care - but they are leaving this burden to future generations of Islanders to shoulder; as far as they are concerned, it is not their job to plan ahead. I have never come across detailed, well thought out, transitional planning for this eventuality. If it is mentioned, it is usually at interminable meetings (and has no one any grip on the idea that meetings should effect change?) which serve only to raise hopes, and then dash them, as any planning is simply forgotten or postponed, and the professionals come and go. At the end of the day, they go home to a nice tidy existence, and can sleep easily; it doesn't effect them personally.

An example can be seen in the respite facility that was given by Aviemore, the building next to Haut de la Garenne. It was run as a charitable enterprise under the leadership of Sue Deans. If short-staffed, she would roll up her sleeves and get stuck in. Now it is part of the States, and the line manager (Social Services) became a 9 to 5 individual who wouldn't dream of doing that, and anyhow - this was an excuse given - they weren't trained for that, and it wasn't part of their job. Faced with that kind of bureaucratic stone wall, you can see why David Cameron thinks "The Big Society" is a good idea. What would be a better idea would be for the higher salaried line manager to go on training courses so they can earn their money. I'm not naming names, but I've seen one of those names cropping up on Stuart Syvret's blog, and quite frankly, that doesn't surprise me.

If Ian Gorst is serious about looking to increase pension age because he is looking ahead, perhaps he might open his eyes to this appalling record of failure, and do some proper planning here, or at the very least, commission someone to look into it and come up with practical proposals, and not a report that will be buried and forgotten. And in the meantime, the States could some of that extra cash to do some real good, like helping young adults like Martin, rather than being self-congratulatory about how much extra savings they've achieved.

At this rate, the next Chief Minister will probably be so miserly as to make Ebenezer Scrooge look positively philanthropic.

1 comment:

voiceforchildren said...


One would like to hope have that lessons from the past had been LEARNT