ready to fight them again

[JenRose]

2/3 months ago i asked for a carers asessment for M and R.

we were turned down because M has AS and doesnt meet the criteria.

i asked them to send me a copy of their criteria but they not surprisingly didnt reply.

now we have a break from the tribunal im ready to tackle them again.

i have been in touch with the exec director of our council over M,s tribunal and am wondering whether

to write to him as he is the head or try the manager of social services again.

i know a few people on here have had trouble getting carers asessments but have gone on to get them

and was just wondering if anyone could give me any advice.

thanks

jen

[Minx]

2/3 months ago i asked for a carers asessment for M and R.

we were turned down because M has AS and doesnt meet the criteria.

i asked them to send me a copy of their criteria but they not surprisingly didnt reply.

now we have a break from the tribunal im ready to tackle them again.

i have been in touch with the exec director of our council over M,s tribunal and am wondering whether

to write to him as he is the head or try the manager of social services again.

i know a few people on here have had trouble getting carers asessments but have gone on to get them

and was just wondering if anyone could give me any advice.

thanks

jen

HI

 

I too had a carers assessment done for myself and assessments done for both boys with AS. They told us we did not meet the criteria. We wrote a letter of complaint to Social Services Manager, listing the things we were not happy about and asking for all information on our boys. After a lot of fighting for our rights it was decided that we do meet the criteria now and have been offered 4 hours support a week from Mencap. We are awaiting for Mencap to reply to us. We had all the paperwork sent to us, but it was all typed up, which I think was not the original and has been editied.

 

I suggest you try and complain, listing what you would like from them. If you do not get a reply chase it up. Also ask for all your paperwork back. Write to who is in charge of complaints. Once you have done this you should receive a letter back. They are given a certain amount of time to reply, in our case it was 2 weeks.

 

Good Luck

 

Mandy

[JsMum]

Hi Jen I have tried very hard to have assessments for J, he had a child in need assessment last year and was passed as a level 3 which is still a significant need level but we where denied the services of the Chidrens Disabilty team and direct payments to pay for care for Js needs early evenings as I was finding it really stressful to cope with his aggressive behaviour and hightened anxieties, we really have been throw the mill, the social services family support team discharged us last september and we have had no support other than having to resort to emergancy calls to the off duty social services and the police and gp which have re referred J to the local Cahms team who have already redirected the referral back to the gp.

 

The family support are coming this week, (which may be cancelled due to severe flooding in our area, another story) and they are going to another child in need assessment and carers assessment, the problem with J is that he isnt severe enough for the childrens disabilty team, but too complex for the family support team.

 

I have just recently been intouch with the boss of the whole system and told him that I really cant keep going on like this, that J needs are not been met and we are been severely let down, and that I really hope that J doesnt become another statistic that ends up in the loooked after child because his needs where not met within his biological parents.

 

surprisingly he has listened and since then a few Managers have been intouch, I have been incontact with the Disabilty Rights Commission and I have a draft letter ready to start a claim of the DDA because J isnt recieving any support whats so ever, and I plan to go on This Morning if nothing has been sorted by September 07.

 

 

Its disgusting and families are going into crisis because the support isnt there by the services that are designed to prevent children going into care in the first place, I have it from a social worker that the goverment have more money in the pot if kids simply go into foster care! than deal with them in their real families.

 

So it really is about money, but J has a right to live with his Mum and get his needs met.

 

Ring the Disabilities Rights Commission for more information on the Law and always write to the top.

 

JsMum

[lynda4]

We've had this too. I have 4 children on the spectrum, mostly young adults now but we didn't qualify either! A few years ago I strongly persued it but got nowhere and even involved my MP who was very sympathetic and wrote letters for us but we still didn't get anywhere. Then I found a man who said he would act as our advocate if I had another try. By now we weren't looking for respite so much as someone to take ds2 out places socially and help him with his independence skills. This would give me a break because up til then I'd had to do everything for him. He simply doesn't have a social life or leave the house (except for education) without me and I was fining the pressure of having to be all things to all the children too much. I'd been depressed and had a breakdown a few years ago so knew which way I was heading and because of him having problems at uni, he wasn't well mentally either, having depression and panic attacks. So my first recommendation would be to get someone to act as an advocate for you. I also recommend Disability Rights for advice. We didn't use them for advice on this, it was another problem but they've been brilliant. You could try them and also the NAS or a local autism/AS support group for advice on who could help you as an advocate. Our advocate told me, as other people had recently, that things have changed and now its easier to get this sort of help but to be honest, I haven't found it much easier at all.

 

The problem, in basic terms, so pardon me if I haven't got it quite technicaly right - is that Aspergers isn't "a learning difficulty" according to the social services criteria as most people with AS have a high IQ and its largely measured on IQ. Aspergers doesn't come under Mental Health either, as its not a mental illness as such, so doesn't fit the criteria for Mental Health. So it falls between Health Services and Social Services and we all get missed! The powers that be know this and are trying to rectify it but have a long way to go I think.

 

Anyway I rang Social Services and could tell they didn't think he qualified straight away but they did agree to come and visit us. The man said that they've ben told they have to involve Mental Health in these things nowadays (prob because of above para) so he would be bringing along someone from there. When they arrived, there was one from each team, me, ds2 and our advocate. The lady from Mental Health wasn't at all sure why she was there, so it seems there's still a lot of confusion about all this. Well we had a long talk, about 1 1/2hrs and they asked us questions, though the man from SS had that annoying habit of not liking me talking and wanting it to come from ds who had seized up in that situation and couldn't do more than one word answers if that! He was also happy to listen to our advocate who was talking in more technical terms and was of course a co-professional The lady from Mental Health talked to us both and asked really relavant questions, so ds found it easier to answer her as she worded it better. It felt like she really cared, while the man from SS was just there because he had to be and I could tell he didn't really understand.

 

It took ages to go through because there were delays at every stage and it started shortly before the xmas period. I eventually got a letter from Social Services turning us down because he doesn't meet their criteria, having social difficulties and not global developmental ones It wasn't so bad though because at roughly the same time I got a letter from Mental Health saying they would take it to the next step, allocating us a caseworker, so more weeks while we had a carers assessent and going to panel and finally we got what we wanted, Direct Payments to buy in our own support.

 

Its the best thing that's happned to our family in years and years and will make a massive difference to all of us. To ds as he'll be out enjoying himself with a new companion, learning new skills and broadening his horizons. Better for me, even if just because at last someone is helping me! The psychological impact is huge, just to feel that someone cares and thinks we deserve a break. I'm not exaggerating when I say, this will save me from having to go back on anti depressants and could even save me from having another breakdown, it was getting scarily close It'll free up time to spend with the other kids and for me to spend on myself and if I'm coping well, that makes the whole family work better as I'm a single parent. Months later, through various delays we still haven't got it set up yet but its all agreed and we just need to finalise the last bit, hopefully within a couple of weeks and then we're up and running.

 

So advice would be to get all the help and info you can before you start. Ask advice from people andorganisations and try to get someone to act as an advocate for you, someone who's done it successfully before, several times if possible! Bear in mind that it doesn't necessarily start and end with Social Services, you might get help through other means like MentalHealth. I think though, that the only reason we qualified, is because by the time we got to that point, we were/are both mentally ill with the stress of not getting it earlier! Its disgusting that it has to get to that stage before you get help but if I hadn't carried on trying, I wouldn't even have got that, as no-one was beating their way to our door to offer help.

 

I have a friend who's kids have got Direct Payments, also from Mental Health. I think sometimes that these organisations do want to help but their hands are tied through red tape, so if they can find a way in they will. So its best when you get to that stage, to mention anything and everything that matters. The impact this is having on the whole family, any other disorders or disabilities your child has in addition to AS, like dyspraxia, dyslexia etc any mental health issues like panic attacks, depression, angry and violent outbursts brought on by stress etc that aren't really related to the AS but have come about indirectly because of it.

 

Hope that helps, I've rambled a bit again