martyn Report post Posted October 2, 2006 Hi Every One Like the vast majority of you, i've been down the rocky emotional road of ASD. We all cry and have sleepless nights. wakey, wakey lets do something together. Blow away the cob webs, lets form a pressure group. They always say that theres size in numbers. If theres any one out there to fight the long fight. Please contact me. Thanks Martyn Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted October 2, 2006 What pressure are you wanting to exert on whom?xx Quote Share this post Link to post Share on other sites
martyn Report post Posted October 2, 2006 What pressure are you wanting to exert on whom?xxto change the farcical system we have now. Put pressure on local health trusts lea, The goverment we are talking about childrens futures here. I know it gets loosely banded about basic human rights are being abused. No one person will change attitudes in these circumstances. I'm going to have ago How about You Martyn Quote Share this post Link to post Share on other sites
onlycrazygal Report post Posted October 3, 2006 i think your right martyn good on ya!!! the government has a lot to answer for ......read my posts sometime that ll give you an idea of my gripes about so called professionals and the way they get away with murder........count me in hugs, paula Quote Share this post Link to post Share on other sites
oracle Report post Posted October 3, 2006 (edited) Martyn I have been having a go now for 6 years. Had 6000 parents sign up in support of changing things. My husband did a 2500 miles tour of the UK in 2002 to support our 'Call for Action' We bash on the doors of the powers that be - have even been let in. Speak to these bods on an almost daily basis. Apply pressure until it hurts - are again engaged with these bods re MSBP and related issues - will it change - I doubt it. What is needed is 6000 parents to arrive at Downing Street and to refuse to move and they need to do this every week until they actually do something. 6 years on I am battered and bruised have a HUGE following of parents and do not give up. It is a human rights issue in my opinion try and find someone to make it one though? Good Luck Oracle Edited October 3, 2006 by oracle Quote Share this post Link to post Share on other sites
helenl53 Report post Posted October 4, 2006 Not quite on the grand scale of Oracle and hubby but we have a pressure group that has been active for about three years and feel like we are walking in treacle. The rot comes down from the top and it seems that to even get LA's to conform to the law is an impossible task, let alone try and get efective change for the best interests of the kids! Battered and bruised doesn't even begin to describe Oracle. Surreal is a good way to describe the situation and one mother of a bad dream. Still - not going to give up - ever! HelenL Quote Share this post Link to post Share on other sites
sue1957 Report post Posted October 4, 2006 The rot comes down from the top and it seems that to even get LA's to conform to the law is an impossible task, let alone try and get efective change for the best interests of the kids! HelenL to anyone taking on the system. We made a complaint about being threatened with social workers if we took holiday in term time. God help anyone who wants to take the system on for anything more important. The LA "advised" the school not to talk to us, which the school took to mean any member of staff, about anything at all. When our son was bullied the school wanted us to wait a week to see the HT with CoG present, only out of school hours. We were isolated when the school suddenly started authorising holidays for others who applied - we were suddenly the only ones with a gripe. The contact restrictions would be lifted when the complaint was concluded (i.e. dropped, as the system makes damn sure that it takes months to get to LA panel). The LA ignored written requests to lift the ban as it raised health safety and welfare issues, then our daughter had her head slammed into a metal coat peg, the school didn't tell us, didn't record it, and sent her home. We took the kids out of school for 2 months, so the LA threatened truancy proceedings, got the ESWs involved, and didn't even bother to tell the health and safety unit. We stood our ground, so they suddenly produced a complaints panel about the holiday policy within 7 days, and gave us a "revised" investigating officer's report and an unsigned LA response statement 2 days before panel, confirming that their policy was flawed and would be rewritten in time for September. (The "independent investigating officer" turned out to have been a retired Education department officer, but even he agreed that the LA policy wasn't legal). Lies, fake minutes, "rewritten" investigating officer's reports because he cant spell, cant count to 11, missing attachments (whilst being asked to sign we've had everything), you name it. By this time the LA had told us that we weren't banned from entering the school premises for the purposes of our children's education, but refused to accept that any ban was in place for staff contacting us (Although we had written evidence, and 2 incidents had occurred ). The day before this term started we had to go into the school and sort the health and safety out ourselves, because as the dispute was concluded there was no legitimate reason to keep contact bans in place. We've tried to involve the Dfes, Ofsted, information commissioner, the health and safety exec, the MP, local councillor, the standards committee at the council, next its the ombudsman. Apart from fobbing you off to someone else, so far the silence is deafening. Our LA seem quite prepared to sacrifice the health and safety and welfare of any child whose parent stands up to them. After what's happened to us, I would be wary of helping or advising anyone to take the system on. The price has been so high, it could have been a lot worse. After a year of it, I am emotionally and physically exhausted, financially its stuffed us, I've had to have therapy for months to cope with the stress, and we WON. Or at least we thought we had - its one thing getting them to agree something is illegal and that they will put it right, its another them actually doing it. As yet they still haven't issued the new policy, so now it looks like year 2 could be a possiblity My daughter's new school has just issued a newsletter threatening referrals to ESWs for unauthorised holiday in term time, and we need to apply for a few days at the end of the Xmas break. Could be year 1 of a new complaint as well We've just started a support group for parents in our town - but forming a pressure group for taking on the system just isn't in the plans at the moment. But give it time Quote Share this post Link to post Share on other sites
lorryw Report post Posted October 4, 2006 The whole system is full of loop holes, local authorities have the power to change the rules as and when it suits. My local authority is changing the criteria for recieving services from social services. The level of need will rise from critical to substantial. This will remove a layer of people who will no longer be regarded as needing care. I am sure that a large number of those people will include those on the autistic spectrum. Direct payments will now involve a financial assessment. We have 8 hours for my son and we will be visited by a member of the FAB team to assess how much he should contribute from his DLA and incapacity benefit. The FAB title irritates me beyond belief (financial assessment bureau) and goodness knows how much this has cost to set up and to run. These changes are carried out always after apparent consultations which no one has ever heard of. I visited my local MENCAP office and Disability Rights and they were unaware of the changes. Until the rights of our youngsters are set in stone, LAs will continue to dodge their responsibilities at every opportunity. Quote Share this post Link to post Share on other sites
openyoureyes Report post Posted October 4, 2006 what a brilliant idea about getting parents/carers to bash on Nos 10, I am all for that. Lets make a start NOW. Martin you are definately up for the challenge and good on ya mate. I would definately be interested, and any way I can help let me know email me on ricksimpson@totalise.co.uk I have had enough about authorities SAYING that they are going to help and government SAYING that they will look into causes and help with education etc etc etc etc BUT NOTHINGS HAPPENING. Go for it and I will be there at Nos 10 with you. keep me informed. Quote Share this post Link to post Share on other sites
oracle Report post Posted October 4, 2006 what a brilliant idea about getting parents/carers to bash on Nos 10, I am all for that. Lets make a start Been there - still going - done that - will do it again -and will continue to wear the T shirt. Hope Martyn gets a result. Oracle Quote Share this post Link to post Share on other sites
