lorryw Report post Posted October 8, 2005 Ive posted on here a couple of times about my experiences with social services. My son left school in July 2004 and Social Services have still not taken his needs on board. We have had countless meetings, given pages of information and still ss messup. He has one trampolining session (50 mins) and one swimming session (1hr 45min). This didnt take place until April of this year. We were promised an extention of his swimming session to include lunch and a short visit to attend a local day care centre. Fate being what it is, his Monday session went pear shaped and ended in a huge meltdown on the mini bus because the trampoline session had been cancelled and the carers hadnt been told. They rang me at home (I could hear my son screaming in the background) and asked me what they should do. They arrived with him screaming and kicking and he ran indoors only calming when the mini bus was safely at the end of the road. The carers were shaken but declined a calming cup of tea. The following day I recieved the inevitable phone call. How was my son, and the staff were concerned about my personal safety when he kicks off. I have to say I found that quite amusing considering how quickly they had left the previous day. I have never felt threatened by my lad when he is kicking off, my concerns are for his safety. Basically he runs around the room banging his head on hard surfaces, screaming, and punching himself. I let him get on with it because he is too big for me to tackle and the situation escalates if you try to intervene. I really have no idea what can set him off (he is non verbal) and have explained all of this at least 10 times. It has been documented by a nurse, social worker, care leader et all. He had his so called extended session on Thursday. I was working so my husband had the pleasure of getting him ready and on the mini bus. We were told that they were concerned after what had happened on Monday and advised us to be reachable by telephone so that they could contact us in case of problems. He was happy to go off,in fact he waited at the door for them. He left home at 10am and just as my husband was putting the vaccum away the phone rang (!!.45). He wouldnt get off the bus and they had decided to bring him home. He wasnt upset in fact he was laughing and smiling but they had decided to end his session, just in case. I cannot believe that this is a so called professional service. It is now 15 months since he left school and this is the best they can offer us. They witter on about giving us a break and to be honest its not us I am concerned about. He is perfectly content to be at home watch videos, play in the garden and potter around. He is not a problem and to be honest I find his going out with carers far more stressful and worrying. What concerns me is that he is sociable on his terms and is being socially excluded. Should we persevere with social services or tell them to take a hike. My son is not the only one who will need an Autism specific service. I know of at least 5 other teenagers who will require a day time activity in the next few years. Our local MLD school is currently stuffed to the gills with ASD children who will also need services. I am cheesed off with the whole set up and the fact that everything seems to be down to us. We have to be constantly on call in case of any problems,is it asking too much that they have strategies and staff who can be professional and knowledgable enough to deal with any situation that may occur. Compared to all of this school was an absolute doddle (and that was dreadful) Am I expecting too much? Loraine Quote Share this post Link to post Share on other sites
linss Report post Posted October 8, 2005 Hi, Lorraine i really feel for feel for you it sounds like you've been through so much. I'm new to this forum and am so sadened at the struggles we all face. How old is your son? ithink he sound a lovely lad.Sending you one of these <'> Quote Share this post Link to post Share on other sites
katkin Report post Posted October 8, 2005 Linss, he is a lovely lad!! I know the young man and he is not the two-horned devil as purported by S.S. Lorry, why did you not ring me to tell me??!! No, I don't think it unreasonable to expect staff who are professional and capable enough to handle him. But is this likely to happen now. Perhaps a stiff email to **** (social worker person) might help? She has said that S.S are not meeting his needs. I will expect a full and comprehensive moan and whinging session next week!! Kat Quote Share this post Link to post Share on other sites
lorryw Report post Posted October 8, 2005 Hello Linss, thanks for the kind words. Katkin, sorry I didnt ring, I think the phone would have gone into meltdown! You were so right in your prediction that SS would ring. I was only half surprised when I arrived home to the news. Take care and wear fire proof ear muffs on Wednesday. Love Loraine Quote Share this post Link to post Share on other sites
oracle Report post Posted October 8, 2005 (edited) Loraine <'> Your final two sentances says it all for me Compared to all of this school was an absolute doddle (and that was dreadful) That is what we were told when we did our UK tour in 2002. Oh how I wish I could tatto this into the brains of every parent who has a child with ASD at the moment. They will grow up and if you think it was bad when they were children - boy you aint seen nothing yet Parents fight for an education - why? Because they think there children deserve an education - correct they do. But they also deserve a life after their education. Am I expecting too much? NO And nor should you have to fight for it or put up with the large amounts of cr** that are being thrown in your direction. This make my blood boil Sorry this was your rant not mine. take care Carole Edited October 8, 2005 by carole Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 8, 2005 I'm sorry you are having to put up with this lorraine. You have a right to expect better. We have found SS to be completely useless so far as well. Quote Share this post Link to post Share on other sites
florrie Report post Posted October 8, 2005 My asd son left school a year ago, and it really has been a nightmare trying to engage social services and then realising they don't have any understanding at all. I really sympathise and it seems to be a problem getting proper support for adults and things definetly need to change. Sorry I can't be much help, I'm in a similar boat myself, and you are definitly not asking too much expecting your sons needs to be recognised. Quote Share this post Link to post Share on other sites
007paul007 Report post Posted October 8, 2005 Hi Loraine Sorry to hear what you have been going through, I have all that to come when my son leaves school in a couple of years. My son does get respite at the moment however and is at the severe end of the spectrum and is also non verbal. When he started to go to respite it was just towards the end of our darkest and hardest time with him , we had things where he would not get into the transport and was rather unsettled now when he goes he can't to get on the transport and get off and leave us behind. He might need time to adjust either way I know from experience how bad things get and I hope they pick up for you soon. Quote Share this post Link to post Share on other sites
Kazzen161 Report post Posted October 8, 2005 It is probably worth persevering, to the extent that when it goes well, it will be good for him. My friend is going through similar to you at the moment, and it has been a long drawn out process, but it seems to be coming together at last. She has been fortunate to have a very good befriender from an agency who really understands her son. He is now working on introducing him to two other befrienders. We are in the same County as you. Have you had any help from Mencap in Basingstoke? - the lady there seemed very nice, and may be able to help you sort this out. Karen Quote Share this post Link to post Share on other sites
nellie Report post Posted October 8, 2005 Loraine <'> I do sympathise. Did SS do a core assessment, did you agree with this assessment and sign it? I believe this assessment should show your sons specific needs and and it should include a risk assessment. The carers looking after your son should have a good understanding of autism and your son. I would insist that the carers had the expertise and if necessary work with you as parents to gain a better understanding of your son. You wouldn't ask anyone to look after your son unless you thought they were capable of meeting his needs, so why should you accept carers who are not suitable. Nellie <'> <'> Quote Share this post Link to post Share on other sites
lorryw Report post Posted October 8, 2005 Thank you all for your concern and information. Nellie, Im not sure if we have had a care assessment. To be honest we have very little in writing. I will contact my social worker on Monday and find out. Carole, I totally agree about important it is for parents to think of the future. Education is important but school days are over so quickly and then what? I truly hope things will improve in the future but it will be a very slow process. I do wonder what on earth happened to people a few years ago, did they just disappear off the face of the earth? Love Loraine xx Quote Share this post Link to post Share on other sites
Tez Report post Posted October 8, 2005 (edited) The NAS in the West Midllands have set up a befriending scheme whereby a team of trained volunteers befriend and assist families with autistic members and help out in whatever way they can, this can be taking the autistic person out so the carer gets respite, or just sitting and having a cup of tea and a chat with the carer, it is left very much up to the befriender and their family to agree between themselves. It is not always quick to be matched with a befriender because the scheme is relatively new and they try very hard to make the matches suitable. I don't know if a similar scheme exists in your area that might be an alternative to SS. I'll have a search later and see what I can find. Edited to say don't know where you live but here's a link:- NAS Befrienders Edited October 8, 2005 by Tez Quote Share this post Link to post Share on other sites
nellie Report post Posted October 8, 2005 Loraine, It might be a good idea to contact The Princess Royal Trust for Carers and find out exactly what assessments you are entitled to. I know you, as your son's carer, are entitled to a carers assessment. I think your son is entitled to a core assessment. Once you find out your rights you can put pressure on Social Services to carry these out. Princess Royal Trust might be able to offer you support. http://www.carers.org/home/ Good luck Nellie xx Quote Share this post Link to post Share on other sites
Mother in Need Report post Posted October 9, 2005 And what pressure might that be exactly Nellie? Are we talking court cases here, when they don't follow their own rules? Legal aid doesn't stretched that far, and I dare say they damn well know it! Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted October 10, 2005 The other possibility is to look into person centred planning,where you find your circle of support to help your son realise any aspirations he might have.I'm looking into setting one up for my son and he's only 7.xx Quote Share this post Link to post Share on other sites
Kazzen161 Report post Posted October 10, 2005 www.pcp-in-hampshire.net is a link with info re: person centred plans. I have a feeling it would just end up with me and my parents there anyway, so wouldn't achieve much. Karen Quote Share this post Link to post Share on other sites
Helen Report post Posted October 11, 2005 (((((HUGS))))) so sorry for your upset Loraine, I can't offer any advice, just wanted to let you know that I sympathize with you <'> Quote Share this post Link to post Share on other sites
lynyona Report post Posted October 11, 2005 lorraine i know how you feel on this one.Since kieran left school he was eventually diagnosed as being on the spectrum two weeks before his 18th birthday.He was referred to social services and they came out to assess him in may 2004 and up untill this day i havent heard a word from them the last time i spoke to them in october 2004 they said they hadnt forgotten still gathering information.So i thought i ll just get on with it the only idea s they had was to get kieran in to college which was a complete disaster and so distressing for him i gave that up as a bad idea and some days out on a sunner programme ,he went to one because they were going on a train, apart from that nothing no contact from clinical pshycologist to see how we are doing.The best way ive found is to take aboard advice from parents on this forum and others like it otherwise your on your own. lynn Quote Share this post Link to post Share on other sites
nellie Report post Posted October 11, 2005 And what pressure might that be exactly Nellie? Mother in need, It's crucial to find out what you are entitled to, this could be assessments, financial support, respite care, provision etc. Information is power. If you don't get what you are legally entitled to complain through the proper channels. Every local authority has a complaints procedure, find out what it is and use it. It may be possible to take a complaint to the local government ombudsman, they deal with cases of maladministration. This is the link http://www.lgo.org.uk/ Have a look at the report summaries. Talk to your local councillors and MP, they may be able to help. I'm not saying it's easy, but help is rarely offered without a struggle. Nellie xx Quote Share this post Link to post Share on other sites
lorryw Report post Posted October 11, 2005 Hi everyone, Thanks for all the support, it makes me feel much happier to know we arnt alone. I have written a lengthy email to my social worker detailing all my concerns, she never answers my calls Ive also been in touch with a local advocacy service who have promised to help. Wow, Nellie that ombudsman site makes interesting reading. So many councils seem to ignore the plight of families with autistic members. I would love to know if they actually take the ombudsmans recommendations on board. Love Lorainexxx Quote Share this post Link to post Share on other sites
nellie Report post Posted October 11, 2005 Loraine, Great to hear you have support. I have taken a complaint against education to the Local Government Ombudsman, I also made an official complaint to my local authority against SS. I won on both accounts. It would have been much better if I didn't have cause for complaint in the first place. You can find details of the Local Goverment Ombudsman's power to act here. Look under Formal Reports, 40 to 44. http://www.lgo.org.uk/origins.htm Good luck - keep us posted. Nellie <'> Quote Share this post Link to post Share on other sites
Mother in Need Report post Posted October 12, 2005 Very interesting indeed Nellie! Thank you very much! This will probably be my next course of action.... Quote Share this post Link to post Share on other sites
