Frankley I'm disgusted by the NAS (wait for the Censorship)

Bob C said:

Dear Stuffed

 

Firstly let me assure you that the NAS value the opinions and experiences of people touched by autism and therefore your post has not been censored or removed.

 

We take feedback very seriously, it is one of the most effective way for us to understand what we do well and where we need to improve, it also gives us the opportunity to give reassurance and in some cases allow us to share information with members of the community or our supporters to help them understand why we are sometimes limited in what we are able to offer.

 

I would be more than happy to look into the frustrations you have come up against and for us as an organisation to respond to you directly in a more official and thorough capacity. To do this it would be most helpful to have some further details and information from you outside of this community group. I will therefore email you directly to discuss this further.

 

I hope you will continue to make use of the community, sharing your experiences and opinions, these really do matter.

 

I would like to encourage anyone that has any feedback about our work to use the feedback form on our website which can be found on the contact us page.

 

http://www.autism.org.uk/News-and-events/About-the-NAS/Contact-us/Supporter-enquiries.aspx

 

Kelly H - Supporter Care Manager

Please do email me and I will explain fully what has been going on currently, I'm more than willing to discuss in a calm and rational manner the ongoing issue I have.

Also after time to respond, I will follow up with feedback on progress on the points raised.

While we converse via email, maybe you could breifly explain as other posters have expressed concerns-other than an advice line,what other support can the NAS offer and how would someone in my age group access it?

There could be many reasons why you've not received help yet.

urspecial said:

I can really understand your fustration but I still don't get what exactly was the issue with NAS specifically.

 

Simply they do not want to know and make no effort to take any interest or follow up on anyone.

But they'll gladly take a donation on the back of Aspergers.

Hear the silence from NAS-deafening.

I intent to keep it on topic and polite and see how long before an excuse is used to delete a polite civil discussion.

Somerset Nhs Partnership foundation trust bridgwater do this and are careful to keep annual account report away from account publications throughout year. For instance sompar underspent 863,000 on community and mental heath in 2011.

Local MP is investigating so I heard.

NAS11866 said:

I must admit I am surprised that no-one from NAS has responded. I would have thought that if what you need is not in their remit that someone would have appeared to say so.

I wonder of they are able to recommend particular solicitors without opening themselves up to difficulties if things go wrong.

Stuffed I am not really clear about direct payments. My son has DLA, but we are not even sure if he fits the criteria as an adult. He has made fantastic progress over recent years and although it is fair to say that we do more for him than we had to for his siblings at the same age he is a lot nearer to being able to look after himself than he was.

Simply the NAS do not want to know, they could have offered a link to Disibility Law Service,Legal Aid finder etc. But they offer nothing, so while they collect donations off the back of aspergers-where's the support!

With regards to direct payments

www.gov.uk/apply-direct-payments

[/quote] Nhs foundation trust move money to government banking service off their accounts and claim poverty by not listing amounts in government bank accounts in relation to current account.

The nhs foundation trust then go after dp users while the accounts show massive underspends.

As you see older adults get very little help as highlighted by posters in this thread. [/quote]

Could you provide more detail on what NHS FTs do as it's very interesting..

I can really understand your fustration but I still don't get what exactly was the issue with NAS specifically.

NAS11866 said:

Is the advice line staffed by volunteers,or are they paid employees? That would make a considerable difference I would have thought.

My son (AS) is just 18 so I haven't really had any experience of what is available for adults yet.

If your son is just 18 then get the ball rolling for direct payments, be aware that depending where you live, direct payments are nhs partnership/council and in my area council want more DP users.Nhs foundation trust move money to government banking service off their accounts and claim poverty by not listing amounts in government bank accounts in relation to current account.

The nhs foundation trust then go after dp users while the accounts show massive underspends.

As you see older adults get very little help as highlighted by posters in this thread.

Accept difference. Not indifference.

We are the leading UK charity for people with autism (including Asperger syndrome) and their families. We provide information, support and pioneering services, and campaign for a better world for people with autism.

But not for us in this thread-notice the lack of official reply either acknolleging points raised or an offers of support. Could it be that because funding comes from council/social services for residential clients-NAS would rather do nothing rather than point out failures!

This thread has been up almost 24 hours soon-how about a response NAS to a simple question.

Thanks to the replies in this thread it shows my experience isn't isolated.

arty said:

I know where your coming from the goverment 'says' they are advocats in helping adults with ASD, however I'm yet to see it. I too am an adult with ASD diagnosis and although I try my best to fit in with sociaty, I am mother, partner, employee as well as part time study. And at times life is tough, it seems there is loads of charities and organisations that help children and also even adults with severa forms of ASD but those that are on the cusp those who are more likely to be affected by mental health problems are not provided for. Please here our cry's and maybe even cut the mental health commisions bill   , provide some better suport and promote some good organisations to help adults with ASD.

If your a child or a residential adult then there are revenue streams / funding.

If your higher functioning and wanting support from the NAS you'll be greeted with a phone line that is constantly engaged, no call queueing or voicemail when I called and covered by what I was told by advice line two people doing one persons job.

I wanted assistance to find a solicitor who could look at documented evidence of illegal behavour by a certain government agency.I hoped the NAS would know a suitable solicitor or assist in helping me find one

I expected that calling the advice line that there would be someone to champion my cause and help me find a suitable solicitor with support and recommendations of the agencies failings identified by NAS the self proclaimed experts.

Instead I was told there was nothing to offer and told to contact Citizens Advice, at no point was my ability asked or any assistance to contact Citizens Advice.

I did however find a local Autism Somerset who gave good advice, moral support and seemed genuinely helpful within their limited capacity and means as a small group. They gave me some email contacts and seemed genuinely concerned

So there you have it, I needed help and got none.

I contacted a professor who helped me to point out to Mark Lever my experiences of the NAS and it's help line- I still got no help.

I posted previously on here and asked for help- the advice line was all that was offered and nobody championed my cause.

So if I have found it a stressful nightmare trying to get any assistance sorted, it shows that less able individuals without the luck to find information and any assistance will be totally stuffed.

I honestly think it boils down to revenue streams and funding- because there is none to be had in my case=no help.

I have been careful to not put anything other than the truth as I found it, this post has been up for hours and the silence is deafening.

Nobody from the NAS has said we take on board your experience and will learn from it, nor have they contacted me to see if I need any assistance where they have been previously lacking.

I still have an ongoing situation and hoped the NAS would be involved and support me- I won't hold my breath.

I also have serious concerns that those less able than me will suffer injustice as any pleas for help fall on deaf ears.

I know where your coming from the goverment 'says' they are advocats in helping adults with ASD, however I'm yet to see it. I too am an adult with ASD diagnosis and although I try my best to fit in with sociaty, I am mother, partner, employee as well as part time study. And at times life is tough, it seems there is loads of charities and organisations that help children and also even adults with severa forms of ASD but those that are on the cusp those who are more likely to be affected by mental health problems are not provided for. Please here our cry's and maybe even cut the mental health commisions bill   , provide some better suport and promote some good organisations to help adults with ASD.

With my aspergers my high intellect and moral duty are so closely linked. I see dark chess in everything. The NAS is a hub point and with every organisation there is corruption in proxy. So the unfairness of the world is something that I am trying to deal with personally, the way the world should work versus the way it really is,, the worst part of this is those which are suppose to assist and help do not, be it government organisation, health, courts, solicitors, social workers, MPs etc, all good at lip service, but when it really comes to the real part, they are ineffectual. At times, I wish the world would just blow apart and other times I see the beauty of the flowers. Nature is my saviour. Just know it is impossible to change or control these organisations or people, just move on you are just upsetting yourself. The world IS a ***.