Reading the GB chat got me thinking...

[thederkinsdame]

Having had an exceptionally frustrating day battling with our (useless) paediatrician and the LEA over school places, it got me thinking... Why are we all sitting out there struggling on our won when together we could do something positive?

Between us mumsnetters, we are probably the most well-informed experts with first-hand experience of a whole host of different SNs. We all read so many tales of woe on here, from parents in desperate and dire situations, and of course, many of us have been in those dark places, thanks to the lack of support from the health service, LEA, agencies... etc.

So why don't we do something about it? Why don't we form our own group to lobby the government and Dept of Education to change things? One voice gets drowned out, but a group shouting might be heard... And especially now Justine has a hotline to the PM, we might be heard ;-)

How on earth we go about it, I have no idea, but I think there are some amazingly talented people here on MN, with a host of different backgrounds. i bet we have journalists, marketing people etc etc and between us, I bet we all have connections that would be able to get us places, as well as being able to give people the reality of living with SN and a crap system.

Waddya think? Is it idealistic? Unworkable?

we all like e-mailing - we could all start to e-mail our MPs.

BuI was thinking about an en masse something - with one voice IYSWIM. if we were a group with say, 500 families, how much more powerful would our voice be?

I was thinking the same - but they will say that already doing Lamb Enquiry over SEN / LEAs. I have this idea in my head which is autism related as I live in autism world right now - but its about early intervention and why all the autism groups are arguing over which treatment is best rather than collectively campaigning for early intervention together. In USA since 2001 have been guidelines of 25 hours a week, 52 weeks a year for ASD children from specialists; yet we get about an hour a fortnight from an outreach teachers who teach mainstream teaching assistants. I've been following the NAS website for 8 months now since DS regressed and I have yet to hear one single thing said about early intervention even though all the evidence coming out is saying how it can make such a huge difference - the National Audit Office are saying look into it because it will end up costing you more when these kids end up in residential - an assessment of teaching assistants came out in the summer which showed that although TA's reduce teachers stress and workload they made no difference to the outcome for the children (most of whom will have SN) which in my view is an indictment mainstream does not work for the majority of SN. The NAS and other groups should be up in arms. Ed Balls is on record as saying he thinks SN units linked to mainstream is the way forward - ie a bit of both - which makes more sense to me than the current system.I'm afraid I don't know much about other SN - I am new to this autism lark - but surely if everyone campaigned for early intervention rather than their own approach they would have more success. Autism and SN became a big issue in the US election - Obama has two close friends whose children have autism - and has just made massive funding available for autism research + healthcare bill pushing through that US healthcare insurance must cover treatments like ABA. Its an election year in the UK, both main leaders have personal experience of SN / disability. ASD alone counts 1% of the population, add the other SN + their families and friends and this could be a big election issue with significant votes behind it. I have no idea how to go about it either - maybe start with a facebook page to collect ideas for a manifesto and then an online petition. There will be MP's will personal links to SN - need to smoke them out and target them. A SN only webchat would be good as well.

How about forming a yahoo group? I definitely think a collective voice is the way forward.
grumpyoldeeyore-thats interesting about Obama. Do you have any links on the subject? TIA

Great! I'm pleased that other people think this should be done. I think we should form a group to lobby the government and aim to get a meeting with the man himself (GB). If a group of mums got together with evidence of the way SN children are being let down by all govt depts not only ed, I would hope that we could form an advisory group to tell them why things need to change and how. How many of you know, for example, that the provisiion in sec schools is virtually non-existent? There are no social communication teams. Nothing as far as I am aware. It is diabolical that our children's futures are being stolen from them for a lack of adequate intervention at an early point. SALT. OT, classroom provision. It all needs to change...

Obama links

Obama on autism - he was asked a question on the hop and although he did the epidemic thing i think he gave a good answer off the hoof
www.youtube.com/watch?v=ND1CSnHKnbE&feature=player_embedded
His funding for research
www.whitehouse.gov/the_press_office/Remarks-by-the-President-on-the-American-Recovery-and-Reinvestme nt-Act-at-the-National-Institutes-of-Health
www.nimh.nih.gov/science-news/2009/nih-awards-more-than-50-grants-to-boost-search-for-causes-improve -treatments-for-autism.shtml
ABA to be covered by healthcare insurance (ie implies ABA is an established rather than experimental treatment!)
www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=7575647
Obama on autism (during election)

Why can't we have an Obama??

great! thanks for that! Will go watch and read!

Anyone else interested?

Yes, new to the sn world too, so don't know much about laws, leas, ...
My ds has asd. But will gladly support and add my name to a good cause for our dc.

Hello mysonben. We had dx the same time, iirc. I don't know where we will be going with this, but I am so bloody angry by the way the system is letting our kids down. TBH I think they take advantage of the fact that we are all so overwhelmed by day to day living that we just haven't go tthe energy to fight for anything else. I really want to change this for all our kids and their futures.

this is a great idea, i agree, we have some amazing parents on this site with a huge knowledge base and powerful voices!

I myself fought my LEA for 2 years and my local CAHMS for 2 years to get DX for DS. I was told i had no bond with my child, that my son had obviously seen domestic violence, that my parenting skills were no existent and made to feel like i was a failure and a liar. My son was excluded from 2 schools by the time he was age 7 and spent a year in a unit meant for teenage mums and ASBO children. 2 years of fighting and we got what DS needed but still we are fighting to get medication to help DS sleep, we are fighting social services to try and get help with respite and we are trying to live daily with our autistic son and trying to understand him better without any help or support from CAHMS......the DX was given and we were sent away!

Bonkerz, you are amazing. No one but people who live with SN know how hard it is to fight for what you need. You sound like you have been a tower of strength for your son. It shouldn't be like this though. I really do believe that there is strength in numbers. The only way we can change it is from the inside. I haven't got a clue how, but all I know is I am fuckign raging at what I am seeing and hearing.

what are you hoping to achieve specifically with a pan-disability lobby group?

imvho, without a specific agenda you will be white noise - ultimately pita white noise with media coverage, which might help, but essentially fairly irrelevant.

there are of course exisiting organisations that would welcome you with open arms, particularly if you have the stamina and desire to fight for change - either locally or nationally (any of the disability charities, scope nas etc) or even starting your own parent's action group to campaign locally for provision. (our local group now runs after school clubs/ activities/ theatre productions, as well as sitting on all the local government committees for provision). this can then feed into local government policy and ultimately national.

i like the idea of a mumsnet lobby group, but would need some convincing of an agenda which is not replicated elsewhere. the main problem with the sn world is that there a million different organisations all doing valuable work and fighting for (and achieving) change, but no joined - up thinking. wouldn't another lobby group just be that? another lobby group?

(not trying to be deliberately provocative - just genuinely curious. have been involved in all sorts of things at local level in this arena - including providing the 'parent' voice and opinion for national policy... i sometimes get very distressed at the fact that there is already a huge amount of lobbying going on, but people still replicate - it just diminishes the existing voices further!)

i'd love to hear more though - what would make the mn lobby group unique?

(slightly aghast at the idea that mn sn is a 'unique' source of knowledge btw - other forums/ rl experiences are available! )

Count me in am not too bad from a marketing pov, some law experience ( altho limited in sn) but i agree there are alot of lobby groups and no linked voices so how about we go about doing just that? Set up communications between all groups that are interested in forming one coherent voice. Now that would be one hell of a movement in itself, but if this was possible could you picture the size of that? I personallly would love to be apart of making a change for my sons future. Media attention is easy to round up if we do things on a grander scale.
What is everyones opinions?

there is a need for aa pan disability groyp- I had another similar idea the other day on another thread, taht of a disability union where all those directly affected by duisability can have a voice, so including carers and the disabled people themselves.

ATM separate lobbies fight for resources and compete against themselves... many years ago I was sworn at by someone allied to a physically disabled charity becuase kids like mine get all the resources (??? are you sure?) As it happens I understand where it is he was coming from- the depths of despair and frustration I suspect. But it did suggest a fragmented community.

A lot of issues are not DX specific; the threat to DLA, availability of respite, carers allowance and studying etc.... on these issues and similar the louder we yell the better.

Groups focussing on individual dx's or groups have a major role, but this is balanced by the need for sheer volume at times. The major charities can work together but often fail to do so (from my experience working in a family support charity and also a major cancer charity's admin dept).

So yes I am in, absolutely.

that was sort of what i meant, peachy, but i think you said it better...

how would you achieve that - the pan-disability role, without fragmenting the voice further? i'm used to doing that at a local level, liaising with local 'specific' disability groups and government orgs, and providing a pan-disability voice, but on a national level, without some sort of official remit (disability czar anyone?) i think we would struggle to provide a meaningful contribution. our real strength, of course, is the media angle, but i'm also slightly concerned that we don't provide (the sn section that is) a large enough voice...

as i said, i'm really interested, but i'm not quite sure where we could fit...

a team with a party/ governmental remit, or with a budget large enough to try to unite the voices of all the independent charities, or to try to set up an umbrella organisation of all the 'parent' groups that exist around the country, that could be a real unification that could go somewhere. most of the parent groups in the country are regularly asked to fill in questionnaires/ surveys/ answer questions on education policy/ etc/ blah - but it doesn't seem to go anywhere. a national organisation of pan-disability parent groups, that all the parent support groups for specific disabilities could also access, would be an organisation that could follow through on all this stuff.

the real challenge is uniting what is already out there, and channelling it more effectively, not setting up a completely different group?

each charity of course values their independence, and in the bunfight for cash, understands that another's gain is their loss, so uniting the crowds would be no mean feat...

The individual charities are needed and of course have constitutions that direct them firmly in terms of where their interests are. These ahve to be registered with the charities commission before they get charitable status (IRRC, did my fundraising amanger course but heck of a long time ago LOL)

I think it does need to operate as a Union, take that sort of direction.

we registered our (pan disability) parent action group as a charity last year.

has there ever been a union? is there anything in existence vaguely resembling such? who were the lobby groups/ stakeholders for dda? it's that sort of level that we could be offering input to, but i'm not sure whether it is practical to be acting in a stand-alone capacity?

To be honest, I have no idea to any of the above, as this is all new to me. All I know is that 500 lone voices would get lost, but if we all came together as one, fighting for a common cause, with everyone involving their MPs, then we might get somewhere. The problem is, of course, as many people have raised, that different people will have their own agenda and priorities.

Hi Starlight. Funnily enough she has just started work with us. She is FAB. I cannot recc. her highly enough. She has just started an early intervention group for autism awareness in Scotland, so I have been talking to her about it.

???

RGO (not meant to be a code name ) works with us too - She is very good at what she does and has all the right ingredients to work with ASD children - patience, insight, practical and thereotical knowledge. Definitely worth getting in touch with.

I agree. She has just started an intervention prgramme for us. I think she is great.

Starlight - possibly, but not on Wed. On Sunday???