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CALLING THE AUTISM COMMUNITY-Your rare opportunity to have a voice!

terrorhawk

Hi everyone,

My name's Tahira and I'm a parent of an autistic 10 year old girl and 2 other children.

I have battled for many years for resources and eventually forwarded a complaint to the Parliamentary and Health Service Ombudsman which was upheld after a thorough 2 year investigation.

As a result of this, I have been selected as 1 of 9 people nationwide to help with reforms in the way complaints are handled when people have problems with government departments and the NHS.

I would love to be able to bring the stories and experiences of as many individuals and families as possible when I meet at the Ombudsman Office in 11 days time.

Please forward me your experiences and share my blog:

http://bit.ly/1zFgL3O

Thanks so much

Tahira

  • Ok this topic initiated by electra has come in under another raised by terrorhawk, after I asked where was the information; I thought they were connected at first, but now am not so sure.

    The deadline for responding to the consultation on the revised version of what started out as Living rewarding and fulfulling lives - Adults with autism strategy, is this Friday 19th December.

    Its a pity if few have felt stirred to respond. It addresses thing like the attitudes of GPs as gatekeepers for diagnosis and support, and whether health and social services workers sufficiently understand the issues - what training they get, and so on.

    Maybe everyone has got fed up with it all, given it seems to get us nowhere.

    I've made a response. I hope others will, because a lot of the issues that crop up on here week by week are represented to some extent in the consultation document, and if we don't speak up at this point, we may not get another chance.

    Also I really cannot comprehend why NAS has kept such a low profile over making this consultation known to us. I guess they want a clear party line this time around, but couldn't they just explain that to us?

  • Gosh that's slipped in under the radar then.........

    I'm completely unaware of this. Wouldn't it be useful to mention it in NAS News? Or are they trying to ensure an official line and no individuals muddying the waters this time? It hasn't even been mentioned in the news from my local NAS.

    This is a chance to comment on the next stage following on from Living Rewarding and Fulfilling Lives. So it affects all of us, particularly what we can expect to get from Local Authority Social Services, but also Health Services. So I do wonder why the circulation is so low key this time.

    I've had a quick glance and two things stand out. One is that the perception of adults with autism just relates to those now going through transition. Those first diagnosed  as schoolchildren are now in their fifties - where are they in this? Not to mention those diagnosed as adults.

    Particularly discussion of employment keeps mentioning "young adults" which is important, don't get me wrong, but there doesn't seem to be anything about ongoing employment for older adults and getting unemployed older adults into work. I get the feeling we're brushing the oldies under the carpet and saying we'll just address new auties.

    The second thing is its about people with marked autism, not people at the manageable end. That remains a particular problem, because if you are relatively abler and struggling, what is being described doesn't cover your needs.

    So given the implications for many people, why is this majorly important consultation so hush hush?

  • Another chance to put forward our views: the adult autism strategy consultation is here:

    www.gov.uk/.../adult-autism-strategy-guidance-update

    Hurry, it closes on the 19th

  • Where is this information? I cannot find it on the NAS website or the Health Ombudsman's website.

    Surely if there is an opportunity for better representation on disability issues NAS ought to be flagging it on their website? It shouldn't just be in one individual's blog site.

  • Hi, while you're waiting for replies, check out the posts + home pg - all the info etc you need for the meeting is there in plenty Smile!