007paul007

no probs got all that behind me, even told that if complaint does reach the ombudsmen there will be a 99% chance of finding it in my favour. Sally what LA are you referring to that was done by the ombudsmen ?

Sally44 what LA was it that was done by the ombudsmen ?

They decided to charge after a flawed consultation last year, they are cutting services, even today they are cutting disabled parking bays in MK by 30%, think it is hit disabilities time. I will be putting in a formal complaint after reassessment tomorrow, then after that I can go to the ombudsmen. Yes he is not employable, the respite is for us the carers according to MKC website but the user is the one who is charged. Apparently a lot of councils are starting to charge now, there other excuse now is that disabled people have been paying for respite for some now so they must charge People with severe learning difficulties otherwise it would seem as discrimination. Just want people to share & like this on Facebook or tweet the story on twitter & ask others to retweet it trying to reach other the other carers so we can get a campaign going & start a petition. Sue Marsh & Nell McAndrew have retweeted it so fingers crossed

They never assessed us the Council agreed to charge for respite and it should of been implemented in april but started in July instead. They contacted the Social workers to see the charge for day care which was nil and they then just put figures together using the crag system, they did not even have the right amount of ESA on the form & took out net rent, council tax, gas & electric then took out £24.40 which is is personal allowance according to government. That left £71.57 which is what they charged for the week. They said it would be £10.22 a night which is a 7th £71.57 but for a weekend break of Fri-Mon it would be a full week charge as Sunday is the start of a new benefit week. I know other carers/parents phone up respite the same as i got the bill so this sound really worrying that's why I am trying to get this tweeted many times & also shared on Facebook so i can maybe reach them & give them an idea of what to do. I have Councillors & my MP involved, apparently they could not tell us how much it would be beforehand as they had to wait for respite to say when my son checked in & out but they could of told us if we had asked a social worker for a pre charge, which they did not tell us about until after the event. This is so mucked up !!!

Hi Tsukimi I can sympathise with you as I and my family have been through what you are going through, hence while I have not been on this site for a long time. The neighbour next door to us sold his to a guy who turned it into a House in Multiple Occupation (HIMO), he changed all the rooms into bedsits except for toilet, bathroom & kitchen. He had no planning permission either, we had music playing all night, motorbikes revving up inside the house, a person on the sex offenders list living there, a police raid as explosive materials were being made, occupants taking the mickey out of my Autistic son. We went to Environmental health, kept a diary even had recording equipment in and was told it was only because my son was autistic that we were suffering & the noise would not bother any one without disabilities. Basically the Environmental officer was saying it was our fault cause of our sons learning difficulties, I ended up having a heart attack due to stress, my daughter who has aspergers was falling asleep at her saturday job, my wife was passing out, twice while we were out & my sons epileptic seizures increased. The landlord just continued to collect his money & did not give a damn about us, the police did nothing until one pcso saw how much we were suffering and contacted Social Services, then we started to get respite. We had a meeting with police & housing & was moved due to health reasons, in fact neighbours either side of this house were moved & guess what he still got planning permission lol. We are in a quiet area with lovely neighbours, unfortunately my health is still affected on heart tablets for the rest of my life. I think I realise dI was pushed to far when I got up in the middle of the night & was considering making petrol bombs to burn his place down & end the nightmare. Thankfully I didn't. He had 4 other properties that were HIMO's all without planning permission and had complaints at all of them from people living nearby. One of his properties did burn down, it was a drug factory so I suppose someone up there wanted to give him pay back.

Hi all I have not been on here for a long while due to a number of reasons, but I have come back today hoping that people will post the link to a news story i am involved in. I was even on 3 counties radio thursday morning. You can read most in the paper but the local council have started charging my son for respite care for us how of his esa benefit, he has one day a week 3pm-9am & one full weekend a month Fri 3pm-mon 9am. All we got was a letter saying some users may be charge & some not way back in march, we got the same letter 3 weeks ago, we never had an assessment or nothing. After my sons weekend stay, first weekend of every month we got a bill, yes a bill after the fact. We cannot send our son to respite as we don't know how much we will have to charge. They admitted we never had an assessment as day care centre charge were zero due to low income, so they made some figures up around £19 for rent, council tax, gas & electric a week took this off ESA which they calculated to be £115 a week, which again was wrong, they also took off £24.40 the government say he can live on a week & what was left resulted in being the charge. We are nowhere near getting this sorted & my son has been a nightmare, I spoke to the respite place on the day we recieved the bill & was told they had been contacted by all parents who were gobsmacked. I am hoping my plight will reach the other carers/parents & that we can do something about it. If you are on Facebook please post this story to your wall & ask others to share even twitter as well if you can tweet it & ask others to RT it, who knows your tweet or facebook post could just be the one that reaches a care/parent in Milton Keynes area or even other areas. It could make a difference I think its time to fight back against what is happening to the vulnerable, disabled & people who suffer with severe learning difficulties. http://www.mkweb.co.uk/News/Milton-Keynes-father-Paul-Ridley-says-he-cannot-afford-sons-respite-care-after-receiving-retrospective-bill-20140714172556.htm Thank you for helping me & others like me Paul Ridley

Hi I am trying to trace a relative wo was in the care system from the late 1950's onwards, a care home he went into was called Peter Pan House at Warwick Road, New Barnet. I think it was a place for children who was classed as ineducable in those days, before we have all the info about autism today. I've done a google and many other services to try to find a contact address of any kind. I just wondered if anyone on here could help or even remember it ?

actually i got it wrong the medical is for DLA as we have asked for a review on the mobility side

My son was on IB and about 4 weeks ago we got a letter saying about him being transferred to ESA, we got the phone call but we have not recieved the questionaire yet. I have just had a phone call from a DR at ATOS, he said he recieved my sons notes today and he is coming out at the weekend with a couple of people from the DWP to try and do a medical as to whether my son is fit for work. My son is at the worst end of the autism scale, no speech, no toilet or self help skills, no relationship or sense of danger skills. Although they have had all the medical paperwork etc they have to do a fresh one and ignore all the other paperwork, I'm looking forward to this weekend and will not try to kerb my son in any way they can see him in his true full colours.

it mut be aroun 3 to 4years, as I have lived here nearly 3 years

Thanks darkshine just shows how long i've been away, when i get your rnaking mixed up with your user name lol

Hi Kilimanjaro pleased to meet you

Hi all I am back and after a couple of years I have finally manage to have time to get back to this site and update you all. I am married and have a son with severe autism, Epilepsy and IBS, he is 24 this year & still lives with us. We also finally got my daughter diagnosed with aspergers this year at the age of 20. Anyway the last time I was on here I was in ill health, having suffered a heart attack after the DWP sent a me letter requesting £14,000 pounds off me after they had made an error, with the help of the CAB, We managed to get letter from the DWP saying they had written off the debt andwould not bother me about it again. Six months later they contact me asking for the money again and even said the letter they had sent out that wrote the debt off was wrong again with the help of the CAB, we got it written off once and for all and have never been approached by them since, and hoepfully touch wood, we will never be approached by them again. We also had terrible problems with our neighbours, when a man brought the house next door and turned it into a house in multiple occupation, where there was parties every night, motorbikes being revved up inside the house, explosives being made inside the house which resulted in a police raid, the tenanats taking the mickey out of my son and his disability. All this caused my health to suffer, also my wife's and both my children's health to suffer, while the landlord, the police and enviromental health did nothing. Eventually the Council moved me and the nieghbours the other side of the landlords property. Now we have been here nearly 3 years and I am off my heart tablets, my son goes to a day care centre 2 days a week, and last year we got respite care for him, which consists of one overnight stay every week and the second weekend of every month. Now also that my daughter has been diagnosed we can get her the help she needs and hopefully help her find a job. I am sorry that i have been away but I hope you all understand, hellos to all the people than can remember me and a big hello to new ones that don't know me. Hopefully this time I will not be away for so long !!!!!

Hi everyone that can remember, sorry I have not been on for a long while but i have been ill with a lot of problems this end but all seems to be moving the right way forward. I finallly got a load of my mind this week when the benefit agency finally sent me a letter on the 11th April saying they had done a review of the case and found in my favour as there was not enough evidence and that i would not have to pay the money back. Great news hopefully I can move forward now !

Hi all Just a quick update, you may read that in June this year, further up on thread I had recieved a letter from the benefits agency telling me they had written off the debt, in black and white. Well today 5 months after this decision i recieve a letter telling me I have to pay it bakc, they have knocked �800 off the total and are saying it is now an amount I can afford to pay, even though they have admitted it was thier mistake in writing twice now ! The first letter they sent in january came on the day of a family members funeral and the second came today my son's birthday, I heard them laughing about it in the back ground when they thought they had put down the phone !! Off to CAB wednesday and most probarbly the docs again if the stress hits my chest like before.

Hi all Just thought I would share the good news with you, after a long fight and with the help of the CAB I recieved a letter yesterday saying that the �15,000 overpayment, which they had admitted was there mistake was being written off and that I did not have to repay it. So thats a huge worry off my mind !

I do sympathise with but understand what you are going through, my son who is 19 now and is at the severe end of the spectrum, certainly pushed the boundaries. We had a system in place where my wife would tell him off, if that did no good then i would intervene, then if need be I would raise my voice and put my hand up as if to tap him on it , and if all else fails then he would get a tap on the hand. This was our protocol over the years but it did indeed change, the smacking element was no good as my son does not have any pain threshold and would do something naughty and then put his hand out to be tapped, it was like he liked it for some reason. It was very rare that we smacked him anyway, usually he stopped when I intervened, it seemed he reacted to a male voice more correctly and that is more the case, which is a bit distressful for the wife if I am around.

I have got someone helping me from CAB, we have just been appointed someone from adult services to help get things in place just after my son leaves school.

Hi all Sorry it's been so long, but a lot of things have happenned. Firstly it seems that when my son turned 16 he was allowed to claim incapacity benefit in youth, the only way he could qualify for this was by still being at school, this was 2004 and he does not leave school until this year. If he got this benefit then we would lose child benefit and also the income support would be adjusted. Well we reached Christmas and New year without any word and then low and behold on the day of my Father in laws funeral a letter from the benefits agency arrives, saying although it was their mistake, I have been overpayed by nearly �15,000 and could I pay it back, they included a bank giro slip to pay it back. Anyway I went to the cab who are dealing with and the benfit agency said that although it was their mistake it was because I failed to tell them my son had left school in 2004, which of course he didn't, the cab have got a letter from the school, which has been sent off to them to confirm them. On top of all this, last week i was in hospital, with a suspected heart attack, turns out I may have an irregular heart beat, and the stress has aggrevated this. So as you see I have had a lot on my plate and i will try and update you I can, if the stress don't kill me first lol !

Hi Lorry My son is doing fine thanx under the cicumstances, various things going on which I can't mention here ! hows things with you ?

Hi to all that remember me, but I just thought i would share this experience with you and what is happenning now. Firstly I am unemployed and me and my partner care for 2 children with special needs, my son is 18 and has severe autism, epilepsy and IBS. I claim income Support for the family and both children get DLA and me and my other half both get carers allowance. Well when he turned 16, not only did his DLA stop, but we also had to pay for the respite, we were advised to claim incapacity benefit in youth, which my son could get cause he was still going to school, but first we had to become his appointee, which we did. The gentleman came around saw my son and agreed we could become his appointee and said he woudl contact the DLA and incapacity deparments. My son is still going to school and finishes school next July at the age of 19, it is a special needs school and has a curriculum like any other school. Well a few days ago I had a review from the benefit office and today they phoned me and said that i should not of been claiming Income support for my son, as i did when he was a minor and that they will claiming back the money for the past 2 years. I will be appealling against it as I was not informed by anybody until now. So be careful out there !

Thanks for the lovely welcome back, I 've a lot of catching up to do !

Hi everyone that remembers me, I used to come on this site loads of times and I used to run a community on a famous auction site, unfornately the group was closed down by me when I had a bit of a breakdown and am only starting to feel my way back to things now ! For the people that were involved in the group I ran, firstly I would like to say that I am sorry that I closed it down, some people may question my behaviour but sometimes you don't know you are heading for a breakdown, one thing looking back now, and I guess this is what hurt the most was, that when things kicked off and I started to behave irratically, not one of the members bothered to ask why, they just continued to put the boot in without any consideration what so ever, granted at the time I myself did not realise anything was wrong, but I certainly know now what its like to be kicked when your down ! Anyway hopefully I will be around more often now Paul

Well I am starting the slow road to recovery, recently it has been a stressful time for me, I had several things going on at home and I suppose i took on to many things. And although people had commented to me about my change in behaviour and some of the erratic things I was doing, I thought nothing was wrong and tried to keep on going strong as ever , invincible is what I thought, but as we know we are not invincible, it all culminated to me finally snapping a week or so ago and ended up with me closing the group the on ebay which I had built up over many months. This was meant to be a support group and I think it comforted many, I am not sure if anyone noticed a change of behaviour in my postings on this borad or indeed in my group, if someone had contacted me with their concern would I of listened, i don't know is the true answer to that, looking back I did some things that were out of character, but also looking back I found the support group I set up didn't really support me, no one checked to see if I was ok and basically just wanted to kick me when I was down, to me that is not a support group anymore. I will recover eventually and have learnt valuable lessons from this, that maybe before you put the boot into anyone that is down just think before you do, especially if the person is acting differently to what they normally do.

The new group is going well but I am standing down as leader as I think it was done too quickly and because of family reasons and health reasons i am cutting back on things .