Can anyone give me advice regarding how to get help from SS?

[lottieandmias]

A friend of mine has advised me to contact my MP and put a letter in writing about this.

My dd is 13 and is severely autistic. She has challenging behaviour and extreme self injurious behaviour. To date, we have not received any direct payments or respite at all.

About 8 weeks ago we ended up having an edge of care meeting because she had a very difficult phase in November where she pulled out all of her hair. Her Social worker told me that she was going to recommend that her name was moved up the waiting list for respite, which will be 2 nights a month. And also that she would request 20 hours of direct payments a month. This was about 3 weeks ago and today I found that nothing has been requested at all.

We know that since school implemented a new very structured programme for her at school, she has become a lot less anxious. I am a lone parent and I also have 2 other children who are 11 and 5. I have visited the respite Center and it is a lot like a place she goes to on a Saturday which I pay for privately which she really loves. My family, are very unsupportive. I just wondered if anyone has been through this recently and what things you need to write in order to have a better chance of being successful. I really hate being fobbed off like this all the time.

I strongly believe that she should stay with me and her sisters because I am actually very patient with her and I understand her. But it is difficult for me to get practical things done if she's having a bad day etc.

Bump

After every meeting you need to follow up with an email stating what was agreed. Set it out clearly to jog their memories about what was discussed.

If possible try to get someone to attend the meetings with you, a friend would be fine or someone from an agency like MENCAP might be able to help!

I would ring or even better email the social worker tomorrow and ask why the referral hasnt been made, emailing creates a paper trail. You can always ring as well as say I have emailed but wanted to check you have received it!

If they have no excuse I would ask to speak to the line manager!

Your Dd is entitled to this care and you are entitled to respite!

Keep pushing, ring everyday if you have to, be a pain and dont let them forget you!

Hope that helps

Forgot to say, I would also write to your MP, some of them are helpful, some not so. I really depends on how corrupt and vindictive your local authority is!! f they are as bad a mine they will lie to MP's and not give a s..t!!

My mp is quite good. My la have lied to him before but after a few years nothing they told him has been done, lies unravel in the end.

Thank you very much for your advice. It's frustrating but it seems to me that if educational provision is difficult to get then anything that costs money will! So looks like it's time to start fighting for it I guess.

My own experience of social services is to focus on the things they are used to doling out, so preparing meals, washing dressing etc. Getting a morning call to help with washing and dressing will be easier than getting something that doesn't fit the way that they operate eg for old folk.
The transfer to direct payments was more driven by them than me,

Is there any advantage to describing the help you need as educational? If you need to have high structure and high consistency between home and school for educational reasons (and can find am expert who will say so), then you could start tackling it via education as well as social services.

I tripped over this earlier:-

psychology.wikia.com/wiki/Treatment_and_Education_of_Autistic_and_Related_Communication_Handicapped_Children:-

1. ? 29.0 29.1 Ozonoff, S. and Cathcart, K. (1998). ‘Effectiveness of a Home Program Intervention for Young Children with Autism’. Journal of Autism and Developmental Disorders 28 (1): pp. 25–32.

Ozonoff and Cathcart [29] studied two groups of 11 children matched by diagnosis, age and severity of autism. One group provided a control, receiving only a discrete trial school-based programme, while the experimental group received an additional home-based TEACCH programme for 4 months. Pre- and post-testing using PEP-R[30] identified that the experimental group made an overall improvement 3 to 4 times greater than the control group in motor skills, imitation and non-verbal conceptual skills.

If Education start to get wind of a cost coming their way, they may lean on social services to get on with it.

Good Luck

Thank you senvet.

Have you had a core assessment done? If not, make a formal request in writing. They may try to fob you off with a suggestion that your dd doesn't meet the requisite criteria, but that's rubbish: if she has severe autism she clearly meets the definition of a child in need under section 17 Children Act 1989 and therefore should be assessed. The assessment should be completed within 45 days and should lead to the production of a care plan which should set out reasonably clearly what services, if any, they are going to provide, how, when and where.

Oh and, yes, go for MP BUT I have found that local radio can be really effective. It protects identity and the journalists put pressure on big time.

I listened to one case where a mum had been without help for ages and withing 24 hours of starting the investigation, the LA came onto radio with a flourish saying "I can now announce that a place has been found!"

It was ludicrous that they were looking for a cheer when they had behaved so badly, but it worked, which is what the journalists say happens all the time, and they like their pat on the back for helping too.

Have you got a copy of the core assessment report that details the support SS have recommended? I can't remember if that happened after the assessment of after the first panel meeting?
Whilst I understand you may have to wait for a place for DD in a suitable respite centre there is really no reason to delay direct payments. When we actually got heard when requesting help it took several weeks following the assessments from the SW (saying we needed DPs and respite) for the DPs to be approved (I think they had a panel type of meeting and we missed out on the first one - presumably too low down the list of cases to be heard that day). Dps started shortly after the next meeting- I had to set up a bank account specifically to administer DPs. Then we had to wait again (for another panel) to decide to go on a respite waiting list. I am just saying this so you know it is normal to have delays. (we got there in the end - ds was 11- the wait for respite was a year from our core assessment but we had the DPs much faster -within about 2 -3 months IIRC, and it really helped).

The things that helped to get SS to stop forgetting us? Well I wrote to the head of service, and my specialist and Ds challenging behaviour specialist (Also autism and LD) who all thought we needed respite urgently (I had been critically ill - needed rest to hope recover, and ds behaviour regressed due to the change in me) wrote to the SW.
SS seem to listen to other professionals, so if there is anyone who has influence then get them to write (school, specialists, MP).

We got respite (once a month, now at 15 twice a month) for Ds to help build his independence skills - the respite is for ds support primarily, but I know of others where the needs of siblings is considered.
Good luck!

Ps could the respite centre offer 'tea visits' ( transport from school for tea and then collect about 7pm?) whilst you wait for place for overnights? Check with SW - that it will help not hinder any wait for overnights. We did this for ds so he could get used to the staff, and use the sensory facilities.

Thanks again for your help - it is much appreciated. The core assessment was carried out a year ago now.

A year ago! Definitely time to write to the SW, followed by a letter to the head of service if you get no reply in a week. I think I heard something on the radio early this morning about people having to wait too long for support from SS so it might be a good time to approach your local radio/ MP (but stay nameless if it is media of any sort)

SW phoned me this morning. She said that she is making the request for direct payments and that she has to put it forward for the monthly panel meeting which is next week. She also has (apparently) asked for dd's name to be put further up the waiting list for short breaks.

She said that the panel may reject the application for direct payments and say we have to try having a support worker from Barnardos. My opinion of the workers from there that I have met so far is that they are nowhere near qualified enough to care for a child as complex as my dd. We had a visit from one person who they put forward to work with my dd who I felt basically was one of those people who looks down their noses at disabled people. She was not pleasant at all and I felt she did not see my dads a real person which I hate, and have not come across this with others who work with her. This lady cancelled at the last minute. We then had another person who cancelled because she already had too many hours with another child.

I do have quite a lot of experience of people who have worked with dd before, both in and out of the home. My experience is that people who don't get paid are far less reliable.

So does this sound usual to any of you? Or is it more fobbing off?

The range of quality with volunteers will always be enormous.

Maxwell Gillot solicitors have a social care department. If either you or dc are entitled to legal aid they might be able to help you 01524 596080

It sounds so massively incompetent to me, I suspect they have breached some law or duty or whatever.

Fingers crossed for you

Thanks senvet. We may be entitled to legal aid. I am far less familiar with this sort of thing than statementing.