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NAS - reports - Carers UK Forum

NAS - reports

For issues specific to autism / Asperger Syndrome.
Some of you may find these reports of interest.Click below for more.....

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=160
You know the NAS are a really interesting organization, there are all these campaigns on awareness or education but it's as though they have no teeth, in the 8 years since my children have been in the school system things have only got worse.
On phoning the NAS for help regarding tribunals they couldn't offer any advice other than what I already knew and had no advocacy service to attend tribunals or actually do anything useful.
I don't know one parent who has found their organization of any use at all, maybe people here have better experience of them.
My children don't need other people to be aware of autism they need an effective education that addresses their problems and will go some way towards at least semi independent adulthood.
They need speech therapy, Occupational Therapy, Social Skills etc, after all that has been achieved we can think about awareness, which in all honesty I see no impact from these campaigns in any local schools anyway.
Vicky
Vicky, the NAS has been a campaigning organisation for many years and awareness raising has made enormous changes. 20 years ago our area had nothing at all for kids with autism. Local parents - with advice from the NAS - campaigned for change by raising awareness among the politicians, and change came about. It's nowhere near perfect yet, but it is improving. Slowly.

The NAS does have an advocacy service but it is run with support from volunteers: I know a few NAS volunteers in my area who do offer support at tribunals, etc. The problem is finding enough people willing to volunteer.

No one single organisation can do it alone - they simply don't have the resources - but they can help if we all have a go. Strength is in numbers.
Pleased it has made a difference where you live Charles.
It has no impact where I am, and has done nothing to improve my childrens lives.
What I don't understand though is this business of volunteers, I am probably completely wrong but thought they were quite a wealthy organization, does all the money go on these campaigns then?
I did join the local branch some years ago in an effort to bring about some kind of change but found them to be completely unsupportive of my efforts to liase with LA.
Would be nice to know what change came about in you area Charles as a result of the NAS.
I am no longer a member and think like everything else these days I need a reason to support anything even at £10 subscription.
Vicky
Pleased it has made a difference where you live Charles.
It has no impact where I am, and has done nothing to improve my childrens lives.
What I don't understand though is this business of volunteers, I am probably completely wrong but thought they were quite a wealthy organization, does all the money go on these campaigns then?
I did join the local branch some years ago in an effort to bring about some kind of change but found them to be completely unsupportive of my efforts to liase with LA.
Would be nice to know what change came about in you area Charles as a result of the NAS.
I am no longer a member and think like everything else these days I need a reason to support anything even at £10 subscription.
Vicky
If you look at the NAS income, it's many more millions a year than CUK. But most of it is used for their physical services - schools and care services (mainly residential) which are horrendously expensive to run. Comparatively little is spent on campaigning and support.

Bearing in mind that we had a very low starting point in our area - there were no services specifically for people with autism at all in 1988 - we approached the NAS for campaigning advice. As a result, we were able to put a case together which we "sold" to the local authority and the first autism unit opened in 1991, for ten pupils. With continuing advice and support from the NAS we were able to maintain a sustained campaign that has now led to approximately 100 specialist unit places and support in schools for over 1,000 children. Adult services have been slower to come about but the NAS helped us to obtain funding for a residential service, which we decided to ask the NAS to take over due to their expertise in that line of work: kept us free to keep campaigning!! There are other services that the NAS helped with and they have set up their Befriending scheme in our area: it's been running successfully for about 10 years now. Overall, it's take 20 years to get there and there's still too much to do. There's also the problem that you don't notice the good news because it comes in little parcels over a long time. It's only when you step back to see the bigger picture that you can see the progress.

Nothing is ever easy and it's a lot of work for the parents (as if they don't have enough to do). The NAS can offer advice and support but generally have one worker covering at least 3 or 4 counties, which means that they can't do as much as is needed. But things can change.
I was under the impression that the LEA that a child belongs to pays the fees for NAS schools the same way it does any other.
Your local group sounds very pro-active Charles, well done to everyone involved.
I joined my branch working group but found even a letter for the quarterly magazine would have a disclaimer Image
There was a unit set up a number of years ago attached to SLD, but it isn't particularly ground breaking, just autism friendly I suppose, may have been a lot better initially, I wouldn't know.
There are no other autism units attached to any schools, the rule of thumb seems to be HFA/Aspergers= mainstream
Moderate= mainstream or shared or special working towards mainstream
Profound= SLD [now complex needs]
I would like to have seen the NAS more aware and active on the issue of parental choice as it really shouldn't be added into LA blurb if it actually doesn't exist, I believe this is an issue for most areas with a few good exceptions.
My own authority have just changed the face of special needs education generally, not for the better, but looks a lot more cost effective for them, as far as I am aware our local autistic society was not involved, but that is a good thing imo, as changes are now through that were taken after consultation with parents, interested parties etc, no matter that it may have been fiercely opposed, they are just being economic with the truth because there were consultations Image
Vicky
I was under the impression that the LEA that a child belongs to pays the fees for NAS schools the same way it does any other.
Your local group sounds very pro-active Charles, well done to everyone involved.
I joined my branch working group but found even a letter for the quarterly magazine would have a disclaimer Image
There was a unit set up a number of years ago attached to SLD, but it isn't particularly ground breaking, just autism friendly I suppose, may have been a lot better initially, I wouldn't know.
There are no other autism units attached to any schools, the rule of thumb seems to be HFA/Aspergers= mainstream
Moderate= mainstream or shared or special working towards mainstream
Profound= SLD [now complex needs]
I would like to have seen the NAS more aware and active on the issue of parental choice as it really shouldn't be added into LA blurb if it actually doesn't exist, I believe this is an issue for most areas with a few good exceptions.
My own authority have just changed the face of special needs education generally, not for the better, but looks a lot more cost effective for them, as far as I am aware our local autistic society was not involved, but that is a good thing imo, as changes are now through that were taken after consultation with parents, interested parties etc, no matter that it may have been fiercely opposed, they are just being economic with the truth because there were consultations Image
Vicky
You're right about the fees, Vicky, but that is by far the majority of the NAS' income. Everything else has to be fundraised for, and that's always been challenging. I'm by no means up to date on the NAS finances, though!

The local group was very proactive and took a long-term view on progress, but that can be frustrating too. Recently I was successful in completing a project to gain agreement across all professionals working with children on how parents can access diagnosis, with an agreement on the criteria followed and conflict resolution where there is disagreement. This includes giving the parents the opportunity to question a diagnosis or non-diagnosis, rather than necessarily going for a second opinion. It's taken 11 years - far too long - and a lot of frustration, especially as we've been close to agreement several times, but it's agreed and all parties have signed up to it.

Overall, the government's leap to inclusion has a lot to answer for because it pandered to the inclusion lobby in the wrong way. It didn't look at individual needs]http://www.carersuk.org/images/icon_lol.gif[/img]

Years ago, I spoke at an NAS AGM: basically, there were complaints about the NAS at the time and they changed the programme for the day to allow members to have their say. A brave decision and it did bring about change as a result. It's good to speak up as a member of an organisation. If they listen, it's worth staying as a member - you can influence change. If they don't, it's time to walk.
I hate inclusion.
Thank you for taking the time Charles to tell me about your experience of the NAS
Vicky