Curious about opinions on here - should the NAS split to represent HFA/AS and LFA separately?

[jimjamshaslefttheyurt]

This seems to be a real life conversation I'm having quite often now with all sorts of people (not brought up by me, it just keeps cropping up). I think recent Communication magazine have reflected this as well.

My belief (which has changed gradually) is that it should split in some way. Or if it doesn't it needs to rethink its strategy. At the moment imo it really doesn't represent the needs of those with LFA - HELP courses etc are very much aimed at HFA/AS (although not advertised clearly- something which has caused various problems), publications tend to be aimed at HFA/AS etc etc.

I personally think the needs of those at different ends of the spectrum are very different and unless the NAS addresses these differences more and provides separate help/realises it needs to address the different needs separately more people dealing with LFA (not particularly a term I like but the best I have at the moment) will become disillusioned. Everyone who has said to me they think the NAS should split is dealing with LFA. I don;t think anyone dealing with LFA that I have spoken to in the last year has said they think it should stay together. Which is telling. (Not that I've spoken to everyone I know of course).

So I'm sat here with my renewal form, wondering why I should renew. Should I renew and enclose a letter stating that it's my last try with the NAS? Should I quietly give it another go. Or should I just forget it and look to whether someone like Mencap can provide more appropriate support (be a better place to send my money).

Ponders. Interested in other views. It's something I feel very unsure about.

I don't bother with ss, gave up last time, however dh is likely to be made redundant so my lack of working ability (dh couldnt care for all 4 until a lot more well) may place us on benefits, which I hate the idea of and seems silly!

social services never provide support that would allow a carer to work, I don't suppose its in their remit (I don't suppose it's in anyones). It's something that would make a huge difference to families but never gets picked up.

even if they just contributed, sort of like a top up it would be better. SO for instance you would pay what you would pay for a 'normal' child and they top the trest up to make it possible, rather than impossible

Even then a lot of places couldn't take the disabled child though. They have an inclusion support service thing here that they kept trying to fob us off with. There's no way ds1 could go to a mainstream playscheme....

They should put us in charge

I think so too A ramp is not enough

All we would need is for tax credits / student childcare grants (DH's post redudancy plan) to be able to be used for a Nanny when there is a disabled child- therefore allowing you to recruit someone appropriate (they could state eg nneb equivalent and request proof).

With a family such asours, 4 children, a nanny would't nly allow me o work (doubly in their interest as it is a shortage subject I want to teach!), but would no doubt be a saving over childcare grant standard X 4 at 80% of costs a week.

It seems that a split might happen unless the NAS try to redress the balance between LFA and HFA. I think in the past the imbalance may have been the other way but there has been an over correction towards HFA. The Ed Psych who was assessing DS1 (approaching retirement age) was very sceptical about my brother being autistic. She had the 'Don't be silly, autistic people don't get degrees and jobs, that's just for real people' attitude. Presumably when she started her training/career, it was unheard of for autistic people to accomplish anything a 'real' person could identify with. Those attitudes can have a knock on effect throughout the spectrum - if the general attitude/approach is that autistic children/people never achieve anything. That attitude won't help anyone on the spectrum.