to think my local Social Services are a bunch of charlatans?

[FlaminNoraImPregnantPanda]

I'm so very, very angry at them. At best they are utterly incompetent and at worst they are dishonest and stepping way outside their remit. Sorry, I'm pregnant and need to rant to release some of the stress so I can stop crying and calm down.

I have AS and need a little bit of support in the home. I'm not in the UK and here there is a specialist unit at the hospital to support people with autism. They have done a referral to the local SS for me. There are certain support services which adults with autism are entitled to by law in this country, once a referral is made.

SS have rejected this referral as they say they think my difficulties are down to low self-asteem. In their opinion I don't have autism. Despite a team of autism experts carrying out a full assessment and diagnosing autism. Their report was full of blatant mistakes and outright falsehoods. EG saying things were said in our meeting which weren't. I can prove this as the whole thing was recorded.

The autism unit couldn't believe the referral was rejected. They deal with people in my circumstance all day every day. They say they have never had a referral rejected before and the fact they are dismissing my diagnosis is unacceptable. So we appealed to the council's social services appeal board. The appeal included reports from my consultant, physiotherapist, occupational therapist, psychologist and a full and detailed correction of all the mistakes from me. I was told that if this appeal failed the file is then automatically passed to the County Court for review.

It was rejected.

So for the past 6 months I've been waiting for the County Court appeal, which is all done on the file, not in person. I've just got a letter from the County Court saying my appeal will be done on 27th December and if I want to have any further evidence taken into account it has to reach them by Friday. They have sent me a copy of the file to date which they have received for me to review. They have only been sent the original Social Services report and a note stating that I was asked for further information, as were the hospital unit, but we have declined to submit further information.

I can't believe that these people are given responsibility for organising care for vulnerable people. I wouldn't trust them to care for an ant farm.

I've tried to get hold of the hospital unit, the court clerk, a translator, one of the incompetents at Social Services, etc but of course, no bugger is around as it's Christmas.

I feel like I'm going to have a heart attack.

/rant

:(

Again there could well be a charity she can access to provide help with that.

What I am getting at is that a large amount of social services involvement could be avoided by some clever sourcing if self referral services.

Do you not think she might have arranged it for herself if it was that simple? Or that any one of the professionals who assessed her might have mentioned it? Or that the fact she says she's in another country might suggest that their system is different, as she goes on to explain?

oh, for God's sake, what's tricky to understand about I have AS and need a little bit of support in the home ??
what if someone came on here saying I have xyz physical disability... would certain people be asking the OP if she needed the support or just wanted it because she was entitled to it?

FFS

Hallo Op
Sorry to hear this - do you think it may be better to move your thread out of AIBU perhaps?

I think moving a couple of the posters off MN might help.

Agree narked

Onebadback are you deliberately trying to find the OP difficult to understand? You asked the OP what support she required, she X-posted with you, then, 3 minutes later, you're straight back with Again, what support do you require. Give her a chance! She's already said she has AS, would you be so nit picky about exactly what support she needed if it wasn't AS?

Very true narked

Op I'm very sorry you are having to deal with this and I am appalled by the attitude of some of the posters on here.

From what I can gather the dx going to social services and being accepted kind of acts like a gateway on to all other autism related support services?

Does your hospital offer any support or help with dealing with the appeal and court process? Or any nation/ local ASD charities that cover your country?

If so it may be worth calling them perhaps they could offer you a listening ear so you don't feel so alone.

Hey there. I'm training to be a social worker - also not in the UK - and here we have to inform you of your right to appeal. You can appeal about the process as well as the outcome.

I would also suggest that you see if there are any patient support groups or charities that specialise in autism.

I haven't had to deal with anything like this outside of the UK but I know how lonely it can be living in another country, and how overwhelming the system can be.

There are nice people where you live, they may just be a bit tricky to find. Also there are lots of supportive comments on this thread to. Try and focus on those.

*too

Some replies on this thread are very weird.

I hope you get the support you need OP.

If you come back to the thread, I know it is hard having to fight all the time and although I can't offer any practical advice, I do sympathise. :(

Thank you all for your kind words and supportive PMs. I'm feeling a bit more together now. I can also think a bit clearer.

I'm in Sweden, for those who wanted to know.

A bit of background which may make my situation clearer (to those who want to understand rather than judge). I am 50% retired because of my autism. IE the State here officially recognises that I can only function at half the capacity of other people and this will never change. Despite only being 40 I already receive 50% of my pension because of this.

6 years ago I had a massive autistic crash. This is where a person keeps it together and functions almost normally for years, but it's a level of functioning which cannot be maintained. The crash was catastrophic and I lost all ability to function. For 2 years I barely got out of bed. My husband thought I was dying. But slowly, slowly with support from the autism unit I gradually re-learnt how to function and clawed my way back out.

2 years ago my support team felt it was time to start to move beyond just coping, to begin to get back some independence and to aim at being able to work the 50% available to me. But they didn't want me to just jump straight in at the deep end. I need support at home to help me gradually cope better, find my feet and take over more and more for myself.

The referral to social services for this support was made 2 years ago. It has been a long and drawn out process to get to where we are now. Which feels like nowhere. The referral had nothing to do with being pregnant. I only mentioned that in my OP because I was upset and worried about the stress it is causing me and the effect it may have on my baby. The autism team have no concerns for the baby at all. They know me and know I will manage. They are very concerned however about me eg that I am already social isolated and this will be much, much worse once he comes along or that because I'm so focused on taking care of him that I will forget to take care of myself.

Also here in Sweden there is no such thing as DLA. You do not get money to pay for the extra costs of having a disability. If you need help or support you have to go through social services. It's them or nothing, there are no other options.

Everything is also made worse by the language barrier. I do try to learn the language but it isn't easy when you have a disability which mainly affects communication and social interactions. Normally I can get by, but in a situation like this it overwhelms me and I feel like I'm drowning.

Anyway, thank you again to everyone who has been kind and supportive. I'm going to try calling the Court and the hospital again tomorrow. Also my husband is going to get some advice from his legal department when he gets into work in the morning.

Hi here are the details of National Autistic Society type organisations in Sweden
Autism & Asperger Förbundet

The National Society of Autism and Asperger
Bellmansgatan 30
118 46 Stockholm
Sweden
Tel: +46 08 702 05 80
Fax: +46 08 644 02 88
Email: [email protected]
Website: www.autism.se

Föreningen Asperger/HFA
The Asperger/HFA Society
c/o Marie Strega
Grevegårdsv. 206
421 61 Västra Frölunda
Sweden
Email: [email protected]

Website: www.ashfa.cjb.net

Worth contacting them to ask if they have any support services to help you fight social services. I know the NAS do here. Hope this helps

Get DH to ask specifically about patient advocacy services. It sounds like you need somone on your side and that your usual team may be having to play a political game. Massive hugs.

Best of luck, flamin.

I hope the rest of your pregnancy goes smoothly and you get the support you need, now and when the baby is born.

The thing is, yes I feel very sad about them rejecting my referral. Particularly about for the contact person as I am very isolated. My only regular social contact is Mumsnet. I saw my inlaws last weekend, prior to that my last social contact (other than husband and daughter) was at my Dad's funeral in May, prior to that the inlaws at Christmas 2011. I literally don't see or speak to anybody else for months and months on end.

But what makes me really upset and angry is that they have ignored everything submitted by anyone but themselves and have based their decision on their own 'findings' which are completely false. EG they say that I have support daily in the home from my capable 17 year old daughter and as she is a minor further support should be dealt with by some other department. Except my daughter is 20, lives in another part of the country, and is autistic herself with even more complex needs than me. Or their report says that I have no issues around food, food preparation, eating etc yet they have confirmation from the hospital that I have an eating disorder and have been attending a special eating disorders clinic at the hospital every week for 2 years. The clinic submitted a report which states that to progress further I need support in the home around meal scheduling and planning.

That's my frustration. 14 pages of eh? what? huh? Did you actually read the referrals/reports? Listen to what you were told?

I should also add, that Social Services themselves told me that the law states they are not allowed to include contact with parents or offspring when assessing levels of social contact. Then they've gone on to do exactly that.

im sorry you had a hard time on here OP - why not let HQ move the thread to another board where you might get better supported?

plough on with the appeal.

is there anything like an equivalent of the CAB over in Sweden? can anyone help you sort what you need for the appeal?

Oh that sounds awful OP I am and for you. I really hope you can appeal and win. As for sending the forms to court. Is there any 'special delivery' type service over there ?

Are you committed to remaining in Sweden? Do you think your isolation problems would be better if you could return to the UK where you speak the language?