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Self-funded support...

Lemon Zing

Well-Known Member
Around 3 years ago, I gave up my support with Autism Initiatives, in Scotland; I didn't have any support at all for well over a year after that, and to be honest, I felt truly disheartened after being betrayed by that crowd. I wasn't sure if I could really trust these so-called 'care workers' any longer.

I met my current social worker in the fall of 2015. He finances the support. From the jump, I knew he was a time-waster. I told him that I have chronic anxiety issues, so I need a support worker to go with me to film sets (I'm interested in doing i.e. extras work). He was only willing to fund 6 hours. But that was nothing I wanted to gripe over. In the past, A.I. sanctioned 9 hours, and I never really had intervention from a social worker either (like, I had one, but I rarely saw him). They helped me with my shopping. Etc. Usually though, we just i.e. played games of pool, saw films, or went for a stroll. I'm high-functioning, so there's little I need real support for, but it's just that my anxiety is very severe, so of course I require help with that.

He deemed it a "waste of their funding." Or he said he could not justify paying for this. He coaxed me into taking some support anyway, so I did. He got me two guys (no females allowed, sigh) and they were okay, but they couldn't be flexible. I told him my ambitions are #1 here. Nope!

All they seemed to do is serve as 'stool pigeons.' You know? Behave like informants. I was obligated to see a supervisor for a long time, because of my CPO issues. Anyway, I knew he was gonna utilize them as his snitches, and my social worker as an informant too, so I quit the support. To be honest, that wasn't the main reason. It's because they couldn't go with me to film sets, and it annoyed me.

After 9 or so months of calling my social worker's firm about talking to his own boss, I never got any reply. It was a nightmare. All the receptionist did was put me through to his answering system. 9 months later. Still no call.

Then this year, he found me a man from Morocco who works mainly in homes, bathing people and that sort of thing. Right? That's got nothing to do with autism related support. All he did was nip my head, and he didn't want to go for a walk, or shoot films. I had to give him up too. He seen me and my friend recently, and called me a "strange man."

I waited 3-4 months to hear back from The Action Group, so I was getting anxious as I knew September was going to be busy and October as well. I eventually met the manager after my sister seemingly had a positive reception in June, or July. Nope! Had a few words with him and I said I want to fund the support, due to my social worker being awkward, and all he talked about was confidence building so I can go by myself. Because these companies know about my past, I think they want intervention from a social worker by default, then they dictate what I can or cannot do, hence why I desired to fund my own support. Because the support isn't cheap, I said I could just have support when I need it. Extras work is not frequent anyway. Nope! He said they need contracted hours. I'm sure that's not true. I think once I told him bits and pieces (mandatory, though) about my issues, he just didn't like the idea of me not involving a higher power. But trust me. Social workers make your life hell. My sister lost her kids years ago, and is now having to fight a major disease to do with a gluten intolerance, and fight a court at the same time, which ain't easy. Her lawyer was useless. She's going the Parliament route now.

It's just a joke. I also paid £200 to be in a film soon, but where is the support? It's just a real pain in the neck getting anybody to play ball these days.
 
If you can cope on your own without social care - it's better to do it. Prepare for a lot of unneeded stress otherwise.

But you already know it, don't you? Eh. If the support was something more than words...
 
What do these "support workers" actually know about autism anyway? How do they find out about these sort of jobs? From my experience, only the older ones act coherent. The others around my own age just didn't act very clued-up about anything, and seemed like they were really just passing the time.

It's very frustrating paying for support. It's not cheap. The thing is, people have lives of their own, so if they are only giving shifts when it suits me, how would they know when I'd need them again? I don't think that's ideal. Support doesn't really function like that. This is why people normally have friends that have mutual interests. If the workers work with you more often, they learn what you need and what they are really meant to support you for, and whatnot. But then if they are just 'called upon' at a random date, they may be doing something else. Maybe flexible support doesn't exist any more, with all the cuts.

It seems silly in general. If I'm only going to be a film extra, of all things, why should I go through the bother of having to do what social workers are supposed to do? It seems like they just want me monitored, yet I already said I'll just have guys so I don't get attachment issues (I mean, it can still occur with men, just not like infatuation), but it seems it's their way or the highway.
 
I've never had support at all.

It doesn't surprise me that it is hard to find. Care workers have really bad pay. So unless you have an agency when you never know who you are going to get then they will want reasonably regular hours so they can plan their own lives.

I hope things work out for you.
 
I'd be willing to pay £20 an hour. No more. The minimum support workers get is £17 an hour, and I'd even gladly buy them lunch too. It depends on how many hours I'd need them. It's usually not for very long periods of time, which is probably why asking friends for help is better than bugging care people, but then I'm back to the issue where nobody really helps me much (my sister has celiac disease, so she is unwell very frequently). It would also be a shame if I was using somebody's allocated time, when I know that there's people out there who truly need the support. Because I mean, I have autism, but it doesn't affect me as much as others. So I wouldn't want to be taken up time better reserved for somebody who needs the support. I get my shopping delivered, but I do get anxious in shops. Therefore, I just get at least two items, and leave in a hurry.
 

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