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[jerry]

Dont normally read the Guardian but this was passed to me as our youngest has aspergers and has a statement. Not much different in view point than those of many related charities. Dont disagree that the system needs an overhaul but in typically Tory style their green paper is more a knee-jerk reaction to save money (and encourage more privitization-of which only the far better off will of course be able to access) than the more considered approach it requires. Im not unrealistic. I do understand that it IS all about funding. I do understand that the "same size fits all" that comes as a direct result of limited funding does end up failing many. I also see that the system is currently abused by some (I personally know of some parents (single or otherwise) who do this and screw the system for all its worth when their childrens behaviour is more down to their upbringing than "genuine"/inherent ASD ).Oddly enough, these are the same people who dont really want to work either, preferring to screw the benefits system as well.This latter does not mean that such children do not have behavioural issues, but that the causes may not simply be attributed to such conditions as ASD. Naturally such "enviromental" causes (inc "bad" parenting) also need to be tackled but not under the banner of "special needs". I see clearly that the "every child matters" tagline brought in by New Labour is simply that. A tagline, rhetoric that once upon a time meant well but is now meaningless because it is unsustainable. We have been  very fortunate in some of the really dedicated people we have met within childrens services regarding our sons aspergers and his dystonia but we have also had extremely bad experiences with the school system, so much so that we have had to resort to home tutoring. Although we have met a few excellent people within the school system, far too often we have met ignorance and (much worse) those who think they know better based on so little knowledge. We have met some fantastic people working mostly within chariatable foundations that offer support. We are not stupid. Im a union rep. Im driven. I dont take "no" for an answer easily and I am not afraid to challenge anyone in "authority". (OK, I can be a self opinionated gob-sh*te ). Im prepared to push and will find a way through somehow . But are all parents of "special needs" kids like this? Weve recently been allocated a social worker because someone from childrens services was a bit astounded that we have taken on so much on our own. I know its ultimately all down to funding but if we are not so very careful we will slip back to so many "special needs" children slipping through the net and ending up in poverty or crime (unless mum and dad are rich ). Dont believe me? A cursory research of the lives of many who have aspergers/autism and were born in the 50s/60s or even 70s should enlighten you. Like so many of this governments green papers the start of a very slippery slope if unchecked

[flyer 0712]

I agree with what you are saying and this goverment is hell bent on saving money and i agree that as a country we cant continue as we are going...downhill....I believe that the social system stinks and needs a complete overhaul to allow those that are in need of help in any way get what they are entitled too....shake up the work situation stop allowing those that just are too lazy to work get jobs and make them go to work or stop their benefits..motability have bought in new rules to stop the misuse  of cars and false claims and not too soon either..if the system had a complete overhaul then the money and help would go to where it belongs to people like yourself and many others in genuine need of it.....Some may think i am whinging....maybe i am..but i am proud to say that i am disabled and have worked for 50 years ..never been out of work and think that i have a right to do so...i hope that you receive all that you are entitled too and makes your families life a little easier....

[jerry]

thanks for your response yar!
Cant agree more with you about misuse of the motobility scheme either-think Ive lost count of the number of times Ive witnessed questionable allocations! I work for a major supermarket and a quick glance at the front row of cars in the disabled bays sees not only the majority to be very new registrations but also of prestige or sport end range. Of course there are blatantly genuine users but there are many users who do not show any obvious signs of disability. Many years ago when I was a store manager for a different retailer I was dealing with a member of staff who we had to release through ill-health. She was a lovely lady with very genuine needs who could barely walk yet she met so many problems when trying to get mobility benefits it was unreal. And then there were others who had the new motobility car, the "blue " badge but could take the dogs for a walk on the beach every day (and I dont mean a very short ramble either). Our 8yr old has a working diagnosis of dystonia in addition to his aspergers. This means that whilst just over a year ago he could walk he now can probably manage 20yds without a wheelchair. So we really do need a vehicle to get about. Weve applied for the "blue" badge and Im happy that weve also got the free tax disc from July. Thats all we need. The car is 18 years old but its fine. I dont need-nor want-a brand new higher spec motobility car. We dont need one so why should the state fund one? Of course there are those in a different situation and they havent got a car but need one and so should be eligible. Then theres a young lad at work who has deformity in his hands and feet. To drive this means he has to have an adapted vehicle. The "snapfit" steering assist that contains most of his main controls costs about £700. Without these adaptations he could obviously not drive a car with all that entails. Did he get any assistance financially? No. I believe his parents are relatively well off but he is over 18 and on a trainee management scheme so hardly rolling in it himself. So why no financial help? I know that no system can be fair to every individual case but its surely not beyond the wit of government to do better than they are?