Sarah L Report post Posted January 29, 2007 I have been waiting for an operation for nearly two years now. I finally get a date - 14 February. After the op I will not be able to drive or lift for six weeks. I need to get some help, I had been told previously that this would be availble when I needed it. I told the school - response "just let us know who will be collect JJ". Spoke to my care co-ordinator - response "Surely you and your husband must have talked about this when you agreed to the operation". Health visitor has spoken to Cross roads - response "we don't have any volunteers available at the moment" The social worker was to visit this morning - called to say he was feeling well because he had been working all weekend on a report so he wouldn't be visiting. He also said that because it was the end of financial year they was no money for JJ's respite package which has been talked about for nearly a year now. Even though JJ's statement said about transport to school because we live 2 miles from school not 3 miles from school we can not have this either. What is the point - I am desperate and don't know where to turn. Quote Share this post Link to post Share on other sites
pumpkinpie Report post Posted January 29, 2007 Im sorry but the 2 mile qualifying comment for transport is a load of rubbish. Have you written to the leas transport dept and filled in their form for transport. I would do this and be ringing them up every week. When has the social worker re arranged his visit, speak to him on the phone and see what he says. I would write immedicatley to my mp and talk to the paper about this, they have known for ages about your operation and are basically taking the mickey. When I workrf for the ciovil service mps letters were like a time bomb and the only thing that could cut through the beaurocrasy. Dont cancel your op this is a clear test of every child matters and these depts need to get their act together! Quote Share this post Link to post Share on other sites
baddad Report post Posted January 30, 2007 Hi sarah - Not sure what to suggest here because there are so many elements to your post, but I would have thought the main area to concentrate your efforts would be social services rather than the school/health visitor/care co-ordinator etc, as SS would (I would have thought?) be at the centre of that infrastructure... If you try to talk to all of those different providers yourself, you'll probably just find yourself being sent on a round robin., so let SS do it and you just keep on top of THEM - chasing them up left right and centre, and referring it back if they try the same tactic of passing the buck. The only other people i would suggest contacting is the Citizen's Advice Bureau - they should be able to advise on just what services do exist in your area (maybe some voluntary/charity organisations too?) and the lines of responsibility (hopefully all leading back to the SS, who are likely to be funding stuff at some level)/accountability for accessing them. The other thing you should ask CAB is about employment law/regulations and your partners rights to compassionate leave and/or unpaid leave. Keep it as a last resort, but if push comes to shove it may - in the timescales available - be the only viable solution. Final thought - your care coordinator's response: "Surely you and your husband must have talked about this when you agreed to the operation"... Don't quite get where he/she is coming from? Whatever the op is, it has been recognised as a medical need by whoever referred you, the person/people you were referred to, and the local Health Authority... that takes any form of 'agreement to' (other than the legal one of 'consent') out of the equation, and makes any discussion between you and your husband - whatever the outcome - a moot point. It's not a question of if you need the op, but when, and unless the support circumstances are going to change and the surgical team made available to work to that 'Window of opportunity' that's a moot point too... Hope that's helpful L&P BD Quote Share this post Link to post Share on other sites
Sarah L Report post Posted February 1, 2007 I went to the local asd carers meeting yesterday. It was very useful, I managed to get a couple of phone numbers of people higher up the scale of education and social services. Got home and made the telephone calls and now the lea case officer is sounding more positive about temporary (ie the six weeks) of transport required and there may be a pot of money at the local child services that could cover a carer taking JJ to his activities. At the moment just talk but definitely a step forward. Sarah - Quote Share this post Link to post Share on other sites
baddad Report post Posted February 1, 2007 Hi Sarah - So glad things are looking brighter It's amazing, isn't it, how different things work when the instructions are moving down from the top instead of up from the bottom Exactly the opposite of how it should work (the poor beggar at the bottom being 'us'!). Glad you've made the right connections, and really hope it all pans out. L&P BD Blimey - nearly forgot Very best with the op, too <'> Quote Share this post Link to post Share on other sites
Paula Report post Posted February 2, 2007 (edited) Ive escorted on buses where the kids only live round the corner from the school but because its impossible for the parents to transport them there they get transport. Hope youre op goes well and you get the help you need. Edited February 2, 2007 by Paula Quote Share this post Link to post Share on other sites