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NAS web chat NEXT WEEK -Carers UK Forum

NAS web chat NEXT WEEK

For issues specific to autism / Asperger Syndrome.
On Wednesday 14th October we have Jonathan, Welfare Rights Advisor for the National Autistic Society, in our chatroom from 7.00-8.00pm.

On 13th October, the National Autistic Society (NAS) launches its new campaign, ‘Don’t Write Me Off’.

Due to the lack of understanding, services and support available to help adults with autism, thousands live without a job or benefits and are forced to rely on parents and carers for support. The campaign will show how the benefits system, particularly the new Employment & Support Allowance (ESA) isn’t working for people with autism.

Find our more about the campaign and the chat,
http://www.carers.org/messageboard/2/15021/thread.html

Sam_B
If I can get past your bouncers I will be there Image
I'll let the 'heavies' know you're coming along. Image
Oh goodee another campaign from the NAS.
Wonder if they might touch on the fact that these adults and all coming up behind them are so much in need of benefits because often times they have spent their entire childhood in babysitting services or would that ruffle too many feathers?
I have never seen any impact at all from NAS campaigns absolutely nothing, nada, zero.
Vicky
Hey Vicky, I thought this campaign on benefits might be interesting for carers. Let's see how it goes in the chat.

Sam_B
I understand that Sam B, it's just so many campaigns from the NAS that go nowhere at ground level.
Unless something is put into legislation it has no teeth and I just feel that the NAS doesn't ever flex it's muscle as such a large charity should.
I have followed their directions in advocating for my boys, gone through all the required steps up the endless list of complaints procedure, reached the very top government department and then been sent by them right back to the start.
I understand this campaign is aimed at adults but god willing my boys will be adults and I just would like to see more support.
I liken it to teachers who if they are not given all that they are "entitled" to or anything is not there that should be can take it straight to their very powerful union at no cost to themselves, who is providing the same for our children and adults.
I also don't like anything that smacks of pretty please, so many disabled issues are built around this school of thought, we would never see it among other minority groups, can you imagine ?
Probably off topic but at the same time it is relevent given my experience of previous NAS campaigns. I am very interested as many nights of lost sleep wondering what will happen when I am not around and as a carer these issues affect my own health and well being, we need peace of mind to know what lies in the future as regards to our children.
Vicky
Vicky. I think it'd be worth bringing these points up in the chat, if you want to go. It's at least a chance to speak to NAS directly and explain why you feel this way.

And some of the other carers in the chat might be able to help.

Sam_B
My own experience of of the NAS has left me very bitter.
My son (24) attended a day service in Godalming for six months. He had been assessed by staff from the NAS as fitting the criteria. After 6 months we had a meeting and were told out of the blue that they were no longer able to work with him because of behaviour issues. He was cut adrift there and then, no offer of help absolutely nothing.
The NAS were in the midst of the "I Exist" campaign (I had watched a very expensive presentation a few weeks earlier at our local hospital). I contacted Mark Lever, Chief Executive of NAS. We received a letter referring to a totally different young man! Very sorry etc etc but absolutely no help whatsoever. We were obviously not the only people who this was happening to.
I have no time whatsoever for the NAS, they let us down very badly.
I used them recently to contact my sons school about misinformation on NAS website.
The woman involved seemed very reluctant to do this and I had to remind her who the NAS claim to advocate for.
Anyways she did contact the school in what appeared to be sufference and consequently the misinformation was removed or in part it was, so I contacted her again explaining that the information was still hugely misleading and she hasn't responded to that email.
I was made to feel a complete nuisance and wonder if she was as abrupt with the school as she was with me.
My experience of NAS is they are good at looking like they help children and adults with autism but don't expect any expert advice or help, and don't look out for their campaigns resulting in any action particularly I Exist.
My oldest existed in his mainstream schools to be ignored and overlooked and a few times bullied physically, more often mentally, their campaign was a complete chocolate teapot as without proper legislation authorities, LEA, SS etc just do what they can legally get away with and silly little leaflets from NAS mean nothing.
Locally a good few years ago I contatcted our local autistic society to try respite as advised, they refued becuase no one would work with such a severe child, couldn't make it up could you?
Vicky