Did anyone see this article in The Times yesterday?

[oliveoil]

This really made me think how on earth do they cope. And all that wasted money fighting for treatment .

www.timesonline.co.uk/newspaper/0,,2742-1161219,00.html

yes I thought of showing Jj but houht she was havig a crappy day so didn't

try again here

Oh no I feel bad now if it makes her feel worse .

Makes you wish you were loaded and could help people out that have been f**ked about.

no I am not saying that oo

just you never know!

Me too. It just sounds so utterly awful, doesn't it? Don't feel bad though OO.

Well that's what I meant on the thread this morning- there's nothing terrible or even unusual about our case- it's just normal. Funnily enough there was a piece in the local paper yesterday about a woman who campaigns for disabled children. Her son was left with severe cerebal palsy following a near miss with cot death at 4 months. He venetually died but they had no help at all during the years he was alive. They asked SS for help (he required 24 hours care- and they asked for one night off a week) and SS told them to get him fostered- so they never asked for anything again. She was saying that parents need a one stop shop where someone independent sorts out all the crap- all the various authorities and departments who seem completely unable to abide by the law, keep promises, provide anything remotely approaching a service. My friend said she went to a meeting back in 1999 where people were saying this and of course nothing has happened. What they actually need are people in charge who give a shit, and so will actually do something.

Also the reason I'm kind of reluctant to go ballistic with SS- I know there are people out there having to cope with far more than me (I know a little girl who was starved of oxygen at birth- is severely disabled- like the boy in the article- has to be tube fed, can't sit up etc- and they get nothing)

It is a disgrace. I have so much admiration, I crumble dealing with a teething toddler .

Just read the article. Found the comment about them being 'educated, middle class and well-connected' interesting. Our HV (who incidentally only visited us once, a year ago, and hasn't been heard of since) told me that because I was 'white, middle class and educated" I would have to fight for everything my dd got.

I know this is going to be controversial but how much do people think that this 'not getting any help' is to do with class and background?

well I'm uneducated, working class (not sure what the well connected bit means!) and I have to SHOUT EFFIN LOUD TOO

my husband is educated, middle class but I dont think the HV has ever clapped eyes on him

I do think that living on a slightly dodgy estate has been a blessing in disguise for us. It's classed as a "deprived area" so the powers-that-be are quite keen to spend money on facilities for the community, although not necessarily SN facilities. The portage service is based literally down the road from us and gets a fair amount of funding because there are so many children here with behavioural difficulties. We also have a local Family Project which (amongst other things) runs a short summer playscheme which guarantees that every child gets a place (sorry, Jimjams ). The demand is high so ds1 has been allocated 2 mornings a week for 2 weeks, which will mean a world of difference to us.

The SN services still have long waiting lists. Ds1 will be 7yrs old before he is due to reach the top of the list for the community OT. He also only has 45 mins a month of SALT, although this will increase to approx. 1hr per week when he starts school in September.

IMHO living in a poorer area can be a real advantage in terms of accessing support and services. A lot does depend though on the type of support you need. The services are good if you have a child who doesn't need a lot of physical assistance, eg disability aids, and who is able to be left with other adults relatively easy. We're extremely lucky that ds1 can cope with different carers. Otherwise the situation would be very very different.

Sorry Fio2 , as soon as I posted that message I knew I might upset/p**s off someone. Wasn't saying that I think that is the case but just wondering if it is a factor? And certainly not saying that anyone 'working class' gets it easy.

In retrospect the 'class/educated' thing probably isn't really what I mean (and that was the HV's descrip not mine ). But the person I know who gets the most help and is most informed about what she is entitled to is a friend who gets benefits/has a council house etc (and i am not judging that at all because many of my friends are in the same situation and I don't thnk it necessarily has to do with class but with circumstances). Maybe its to do with being 'in the system'? Or maybe my friend is just lucky that she has a great 'case worker' who fights for her.

Oh gawd, think I am digging myself in deeper here. It's just that the comment in the article rang a bell as it was so similar to what the HV said and I just wondered if anyone else felt it was a barrier to help? Or whether it doesn't matter who you are or where you come from you just have to SHOUT!

HIC you havent pissed me off at all! it really does take alot to piss me off dear, I am mrs laidback

Actually I think it can be easier if you live in certain areas (rather than be a certain class). Although maybe only for access to SS. A lot of our city is deprived and people who live in areas which have sure start projects seem to find it easier to access SS support. Aprt oif this may be because money has been taken from the disabled section of portage and given to sure start portage. So you have double chance to access there. Or maybe it's just because a certain amount of money has been ring fenced for certain areas so you have access to more potential pots of money iyswim.

IN terms of accessing stuff from the LEA, or HA though I don't think it makes the slightest difference. You just need to shout and shout whatever your background/area you live in.

What happens if you are not a shouter though? So many people must fall through the net . Some people don't like forms or officialdom etc

OO people do fall through the net, my friends is one of them

Then you get nothing Oliveoil. I tried the nicely nicely approach for the first 18 months 2 years. Got nowhere- except a lot of platitudes so I shouted. I think having a SN child can change you- you have to toughen up and you have to start stadning up to officialdom. If you don't then you're child gets nothing.

For example now our SALT is on maternity leave there are 2 children on her caseload being given SALT. One is my son and one is my friend's dd. Yhey have it because we insisited that it went in part 3 of their statements so it then became a stautory duty of the LEA to provide it. Anyone not in the know would have it in part 5 (standard place they put it) where it means jack all and isn;t worth the piece of paper its written on. If you try and fight on behalf of the children who haven't got switched on parents you get told its none of your business (by the authorities I mean). It's truly depressing- all you can do as parents is share information and leave everyone to their own battles. You can club together- but those battles tend to take longer to win- by which time its too late for your child.