Was this comment from a social worker out of order?

[TheUnMember]

I have a meeting with social services on Friday to address the 'issues' arising from a very unsucessful meeting last week. My application for home help was rejected and other, cheaper, services pushed onto me. I felt that the social worker made this decision based on being completely ignorant of autism and somewhat discriminatory in her attitude.

My occupational therapist and advocate from the specialist autism team at the hospital spoke to her afterwards and agree with me, that she she just doesn't get it. They are both coming to this meeting on Friday to try and get her to understand and if not, to file a complaint and take it further. They told me to write down all the things she said that upset me so that I don't get flustered and forget on the day.

I've written down most of them but there's one thing she said that made me feel like shit but I don't know if it's genuinely out of order to say it, or whether by this point anything she said would have upset me. She told me that one of the reasons I couldn't get the help I needed from them was that my husband and daughter (18) have a responsibility to help and support me and then added 'because this is how we do things in Sweden'. I felt like she was making out that we don't care for each other properly because we're foreigners.

Should I add this to my list of issues?

Disclaimer: I haven't included a lot of what was said and other info because then my post would be a mile long.

Okay, I see. Silly cow. I'm in swe too and hate the condescending attitude of some health care professionals. Whereabouts are you OP?

Unmember, I sympathise, my ds has autism and its a uphill struggle to get him any help. He is a child at the moment, but its depressing to read of your situation and how clueless the so called experts can be. My ds is physically capable of doing most things, but mentally unable for various reasons.

I dont know much about adult services in Sweden. Is the decision as to whether you get home help, the decision of the SW? I very much doubt it. I thought her role would be more of helping to implement the support recommended by experts?

surroundedbyblondes I'm in Skaraborg, north east of Göteborg.

I thought her role would be more of helping to implement the support recommended by experts?

I think that's what the experts thought too :o

Fucking hell - she said WHAT??? Her arse needs firing. End of.

... and she is the SN Social Worker. Fucking hell. HOW???

Firing is too good, shooting would be better.

Thanks for the explanation - on an intellectual level I can see what you are saying, but it's still hard to fully understand (if you know what I mean). It must be very hard and very frustrating.

I have just read through, "?the Law of Support and Service to Certain Persons with Handicap (LSS) 1994", "Support and Service for Persons with Certain Functional Impairments (LSS)", which is the equivilent of the UK's Community Care Law.

Within it is the statement about family support and there does seem to be many vaguely written parts.

As Claw said, you need an explanantion of why she thinks that you do not meet the criteria. I think this will turn out to be because she doesn't understand your families complex problems.

Firstly, you need to state clearly that you are a carer to the other adults in your household. The carers laws in Sweden are on a par with the UK. This will stop her being able to consider them as a support network to yourself.

Have you made it clear the support that you need? You qualify for what you are asking for, under
www.independentliving.org/docs3/englss.html

What she may be doing is either trying to minimise the budget given to you, or she has little understanding of your issues.

You should be successful on appeal.

I thought her role would be more of helping to implement the support recommended by experts?

I think that's what the experts thought too

I think she might just get this pointed out to her shortly!! I hope!!

My daughter's occupational therapist once described chores and autism as trying to drive a car with faulty spark plugs. That's a pretty good description.

Firstly, you need to state clearly that you are a carer to the other adults in your household. The carers laws in Sweden are on a par with the UK. This will stop her being able to consider them as a support network to yourself.

This is a very, very good point. I've written it down on my list of things to say. I think she thinks my husband is fine because he works full-time. She doesn't get that this is his 'islet of ability', but without me he'd go in the same clothes everyday for months on end, with 8 oranges and half a loaf of dry bread for his lunch everyday and come home to total squalor. (I know this because this is what he did before he moved in with me.)

Theunmember, you would have applied in writing for the home help, i assume. I also assume you would have been declined in writing and reasons given for their refusal too. Forget about this SW's silly comments and focus on the reasons of the decision maker.

As you are probably aware the way it works in the uk is (i am assuming Sweden isnt much different)

A need is identified by experts.

By Law that need must be met.

Seems they are trying to fob you off with cheaper, half hearted help, rather than following the help that the experts have recommended. (exactly what they are doing with my ds)

Whether the SW understands or not, is almost irrelevant, its about money. She would still probably only offer cheaper help, whether she understood or not.

Prove that the help being offered doesnt match the need and appeal.

how have you all managed in the past Op what sort of things can your husband manage your daughter manage ? are you all quite high functioning did you move recently to sweden i am asking because did you not look into services before you moved abroad , as some service wil be different to the UK , I would maybe look into employing somebody to help out perhaps a carer look into sweedish voluntary organisations , i hope you get something sorted

Hope you get it sorted OP, its good you have other experts at your back :)

I had my meeting on Friday and would like to report that it went really well, it was all a misunderstanding because of my daughter translating, and it's all sorted.

But that would be lying. It was horrendous. It started off strange, but well, and then just got worse and worse and worse. At first she said she had discussed my case with her team and that they all felt it was really important to get a good support plan in place so that I can have a better quality of life. I thought she had been abducted by aliens and replaced with a replica. Unfortunately it didn't last.

In no particular order:

• She repeatedly said that their role was to meet 'concrete needs' and that in my case she 'couldn't see it' .

• She repeatedly said 'but everyone gets like that' in response to me describing a particular difficulty I have.

• She said that I choose to live here and I can't cope with this house then I should move to somewhere I can cope with.

• She is totally fixed on husband and daughter doing more. She said I should stop doing what I do, because then they will take up the slack. The occupational therapist explained that this won't happen because their autism is different. They don't 'see' what needs to be done and also don't have the physical skills to do it anyway. So she suggested 'some sort of family therapy' because 'it's obvious then that we're not working together'.

• With the help of the occupational therapist I explained about the rituals, routines, intense focus on detail affects my day to day functioning and health. I burst into tears as I explained anxiety and stress levels which make me want to commit suicide because I can't create a mentally uncluttered environment for myself. She looked all sympathetic, made another 'concrete needs' comment and said that 'being dissatified with your situation is something you need to address yourself. Maybe you should think about paying someone to come in and help you'.

• But the last one really took the biscuit and I got really angry. She kept saying that I need to take on activities outside the home because then I'd get more done when I was home and wouldn't need help. I explained how I am barely keeping it all together now. That it's like juggling with three, it takes everything I have to keep those balls up and it's killing me. Throw in another ball and the whole lot will come crashing down. The occupational therapist confirmed that this inability to manage a number of responsibilities is typical for people with autism. She replied with 'It's very dangerous to have that attitude ... you have to get over it if you want to help yourself to get better'.

At which point the 2hr meeting ended because I thought it was pointless. I'll wait for the written decision and see what happens. I recorded the meeting so there's no way she can deny any of it if it goes to appeal.

I thought it was telling that as they were leaving the interpreter actually hugged me and whispered 'fight this, she's wrong'.

Sorry, this is a whopper of a post.

I feel so bad that you had an awful experience, and i think some of what she says just needs to be better explained. WRT what the occupational therapist and the autism ppl would like you to have and what you get, even here there is often a shortfall.

does the OT work on the social worker team, if not then you probably wont get all that she wants. in my local area, the autism team would love to give all to everyone but in reality it doesnt happen, the autism team dont have a good idea of sw budget as they are even employed by the same people. in saying that the autism ppl can often access other funding separate from sw, such as charities, or care grants that sw cant access.

housewise, where she said about moving, would it be an idea to consider a change of house, or adapting yours to make it easier?

with the help from other adults, particularly your husband, you said he can do some of it but doesnt see that it needs done. could you implement a routine of you giving him a few jobs that you see that he doesnt each day? things he could manage. it wud also show the sw that you are prepared to help her/open to suggestions. then you can go bk and say right, dh is doing this and this he cannot do this and this, help is needed with task A, B, C.

or have u tried asking for a different sw?

Well I've finally got the official decision.

My application for support with social contact has been rejected. They say the law is that I am entitled to support to live a life of equal quality to others. They don't believe that my social contact is impaired and that my social needs are met through my family and personal friends.

Eh? I wouldn't have a diagnosis of Asperger's if I didn't have significant impairment with social contact. My family consists of a husband around at weekends only, my daughter is moving out next week and I have no personal friends. The only contact I have, other than that and MN is a phone call from my mum once every couple of months. So not speaking to another living soul (other than the dog) for years at a time is normal.

My application for support with practical matters, planning, motivation, etc has also been rejected. They recognise that being autistic means there are significant needs however those needs should be met by the other members of the household (both of whom are autistic too). They therefore recommend family therapy to sort it out.

Added to this, I now have the report they have based this decision on in English and it is full of errors, assumptions and falsehoods. Such as 'this report was sent to Kladdkaka on ... for comments but she has chosen not to participate further'. Bollocks! I rang up repeatedly to ask for it English, as is my legal right, you kept saying you'd get it to me, then you fucked off on holiday for 4 weeks. Or 'Because Kladdkaka has a minor daughter, responsibility for family support does not lie with us but with child services'. I don't have a minor daughter!

I am so angry.

Sorry to hear that result. Is there an appeals process, as you've seen inaccurate things in their report?

Yes there is. I have an appointment with my hospital social worker on Monday to prepare it. He was pretty gobsmacked. He said he's never had anyone in my situation have difficulties getting this help before.

Hopefully the new sw will be able to fight your corner a bit more.

Oh kladdkaka :( so sorry to read this update. What utter arses. Banging my head against the wall for you here. How totally shortsighted of them to ignore all but your own disability, FFS. Would they ignore it if your DH and DD both had no arms?!?

Hope something gets sorted. Big Aspie-friendly hugs from me