Don't know where to turn....

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I don't know what to do. Lost my husband 7 years ago and am alone caring for my two adults sons who are both Autistic. I have tried and failed for 7 years to find support. We have had a decent direct payment budget available for 4 years but i just cant find a decent source of support workers and now I have exhausted all avenues and SS just laugh at me or wind me up or play games with me. I have made formal complaints which get me absolutely nowhere. We spend most of our time indoors and feel so alone and unwanted and unloved. We have no family or friends any more..they either died or pissed off. It feels like the only choice is to carry on living our lonely isolated existence or give up and leave this world. I have no way of making sure that my boys will be OK when I am no longer here either. I dont knwo who to talk to any more. Noone will listen.
Hi Kaydee,
It's not easy being a lone carer (I know and I only have one caree with autism.) This is the problem with DP isn't it, unless you have someone to pay the money to for support, they are worth nothing. Social services wanted me to find a volunteer to support my young man! As if there was a whole queue of suitably skilled folk lined up at the front door offering to help out. They then gave me DP and finding someone was a nightmare, I ended up bursting into tears telling someone about it and they offered to be do it if I trained them. She was fab but is now recovering from a major op and finding a replacement was equally difficult and stressful.

I've just realised the time I need to leave for work! I'll finish my reply this eve.

Hi Kaydee,
How old are they? I have a son with learning difficulties, had DP's for a while but have now moved back to care arranged by theLA. My son now lives in Supported Living, as I have health problems, and am also widowed. Your LA should be able to arrange this for your sons, it would take pressure off you and give you peace of mind. Ask your LA to arrange advocates for each of them, and you. All communication by email for evidence. Also request up to date needs assessments for them and Carers Assessment for you. If they won't listen, get Legal Aid.
Hello and welcome to the forum. I am sorry you find yourself here in such a desperate state. But it is any consolation, I think many of us find ourselves here in a similar state and have found comfort and support.

It really sounds as though you could do with some local support from people who understand what you are going through. I had a quick look on the National Autistic Society website and they have a directory of local services you can put your postcode into. Perhaps you could find a support group with some other local carers you could talk to? Or at least find an advocate who could fight your corner with social services?

Best of luck.
Thank you for your replies. There are no local support groups except a toy library for young children. I have tried and exhausted every avenue. After posting here I sent a blunt desperate email to someone who we had tried to find support with and failed because they kept sending us people with drug problems or serious mental health issues because they kept asking if we'd found help and he is close friends with my son's SW. Well within an hour the SW rang and he and the manager of the LD team visited us that afternoon. We are being offered for them to support us in researching local options and looking at finding support for different aspects of support from different sources ie personal care, independent activities and group activities.Its still up in the air but at least they finally responded because someone else alerted them ....they dont respond to me. The worrying thing is that they now talk about a ceiling on hourly rates and I dont know that we will find anyone capable of supporting someone with complex autism on their own for these minimum wage rates? I did manage to get them to listen when I talked about the detail of understanding needed ....its not just about Autistic people liking youngest most severely Autistic son gets bored easily....or super talents....its about sensory issues and managing overload and thinking on their feet and listening to me when I advise them ....we need people who are able and who want to put this effort in or it doesnt work. And another problem is we need male PAs because they have to keep him with them during showering, changing and using the toilet as hes at risk of wandering off. We are told that its virtually impossible to find men to do this work for the minimum wages they offer and even that they cannot offer more money because of council constraints and equality..
The argument about "equality" isn't true, because there is an exemption where personal care is involved, i.e. showering, and certainly public toilets when out and about.
The "ceiling" argument isn't true either, because there MUST be care available which is suitable, regardless of any notional ceiling price.
Have you thought about getting Legal Aid for them so a solicitor can fight these battles for you? That's what I've done.
It is Catch22. Social services know and have acknowledged that we need to pay a higher hourly rate to get the carers we need but recently they have flagged up a provider who on paper meet all the requirements but they would be sending us carers who work in their care home where some very sad and damaged individuals live. We were invited to visit and the residents were screaming and banging on doors and grabbing us and begging us to take them out. But they pass the CQC in all areas as GOOD and the LD team manager and the SW consider them able to meet our needs.... male carers and Autism specialised .....and they charge the preferred council rate. As if all that wasn't bad enough they work double shifts on continuous days so the carers are operating on low reserves and because they are used to being in that environment they lack the gentle calm touch that my son needs. Not an easy argument to make and win though. Many providers say they cannot pay one member of staff more than the others using this equality rule. I have argued the point of personal care and toilet needs and Autism specialism and requiring male carers but the only providers I have found who will agree to this are not Autism specialised or they charge £22 an hour plus which is £8 an hour higher than the council preferred rate. Even providers who previously were able to offer this are being screwed down to charging much less to win contracts. I have been in touch this week with one such and they are listening and want to help. I can only think that I could ask for a joint meet with the LD team manager and them to find a solution round a table. There is a high powered Mencap solictor available but she charges £250 an hour and we dont qualify for legal aid! The problem with legal route as I see it is that it will make our relationship with SS so much worse. I am hoping that having stuck with it for 7 years and having access to bend the managers ears for so long that eventually they will give in. The teammanager has stopped acusing me of being risk averse and he now knows what i am going to say before i say it and is showing signs of actually understanding why Autism requires a differentiated approach. You never idea where we are going but at least we have communication again. I felt so down last week that the doorway to joining my husband started to open and that scares me.I had to tell them that to get a response but needs must. In the early years we had 18 months of my younger sons grief causing him to punch himself in the face and head for hours on end night and day and we couldnt get any help from anywhere. Several times we crawled with him to A&E. The first time they responded by trying to throw us out and so I called the police and after that the police supported us. We had emergency respite ..the only respite we have ever had...4 times but we had to pay for it because we didnt have a budget. I was refused an OT. The psychaitrist we eventually got to see after 6 months of this 24/7 commisioned an IQ test to try and eliminate his eligibility to the services we werent getting anyway. The psychologist who did it refused to cooperate with them and recommended SaLT but they refused to refer for this as well. I arranged a private one but before that happened he got really bad, I took him to our `GP twice in one week and got patronised and attacked so on the way out I said in frustration to the receptionist that perhaps they were wanting and waiting for us to jump off the pier! This got a response...police running down the pier, helicopter up....and 3 days later we had an OT and a SaLT in our front room! Problem was they were there to risk assess not to give therapeutic support. You couldnt make it up. How inept they all are. Apart from which, my husband took his own life so we know that once people feel they have no option left they stop telling people.
It's not an issue of whether or not YOU are entitled to legal aid. It is whether your SONS qualify for legal aid. Is there income based solely on benefits? Do they have any savings in their own names over £8,000 or thereabouts? These are the criteria for getting Legal Aid, very roughly.