Direct Payments for child with asd and severe learning difficulties

[jess1975]

Upon diagnosis our paediatrician made a referral to the Learning Disability Team (had no idea who they where or what they did at this point). SW came to see me in August and did the usual assessments. I mentioned direct payments and she told me at the minute we didn't need them and really they were only being given to families that were literally on their hands and knees begging for help and for families with child protection issues. She then discharged us from her team. He has severe learning difficulties so it's not a case of not meeting their criteria. They accept that he falls under their care. However upon starting special school and chatting to staff about hard things were in relation to doing my daughter's homework and giving her time they indicated that surely we would be able to get direct payments. At this point I should tell you my son is non-verbal, still in nappies with no sign of being toilet trained, he has no understanding of language at all and cannot play with toys. He continually mouths items and requires someone to be with him at all times to ensure his safety. I can't begin to tell you how severely affected he is. A different sw came back out and is basically telling me she will do the application for direct payments but she keeps telling me about families worse off who have been turned down. She also said there has to be risk factors to be successful. Is it the case then that good parents aren't entitled to direct payments? She keeps going on about accessing emotional help through NAS etc. I don't need that kind of help I need practical help for my daughter to enable her to reach her full potential as for the last three and half years her needs have taken a back seat! Has anyone got direct payments for their disabled child?

No advice I'm afraid but I'm watching with interest as I'm also in the process of applying for direct payments - waiting with baited breath as I really feel I need some form of respite as I am now a single parent with no close family or friends & I really need some help & a break occasionally!

Good luck :)

Currently in same situation dd 3.5 severe ld sounds similar to your child. No family nearby. Sw think we will get it but my h has ms - so that bumps up the likelihood of some support.

how old is your DS?

Why doesn't your post surprise me?
DS is deafblind CP, epilepsy and jej fed.
DD rare chromosome anomaly tube fed, colostomy and requires weekly infusions.
Both immobile and severe learning difficulties.
SS feel we can cope so they are not involved.
We both are past retirement age so no longer get Carers Allowance.
Retirement ha bloody ha!! Thank
Wishing you good luck.

My ds is 3.5. Perhaps they think he is too young and they like to wait until parents and carers are burnt out and step in as a last resort. If it wasn't for my daughter I would not be asking for help. I'm shocked at your post 2old2beamum and hope that you are able to access some help soon. Firsttimer a close family member has ms so know a fair bit about it. Hoping you will get some help soon also.

2old that's really shocking - can you appeal?

Have SS done a core assessment? If not, or if it's not up to date, make a formal request for one immediately. That's supposed to result in a clear care plan that shows what support is needed and who is going to provide it. If it doesn't, or if it's obviously inadequate, you may be able to challenge it with legal aid in ds's name, but go to solicitors with direct experience in this area like Irwin Mitchell or Maxwell Gillott. There's a time limit for doing a core assessment which I think is 45 days from the request, but I could well be wrong about that.

I was told it is easier to get it if school referred you. Perhaps ask them to strongly back you request?

its a postcode lottery really - I get direct payments for both boys and did so relatively easily as my LA seem more open to giving them families - just then have other things we have to fight for instead - definitely insist in a core assessment and a carers assessment - if they refuse then complain - I think the NAS have on their website copies of complaint letters re social care as I used them before when I was in another county - as soon as I complained they apologised that I had been told I couldn't have an assessment as legally you can have one but the LA don't tell you this unless you challenge them. although I didn't get direct payments they did put other things into place which did help.

2old2beamum- could you get some Pension Credit with Carer Premium because you have underlying entitlement to Carers Allowance?

I requested a core assessment recently and have been told that I do not even meet the criteria for an assessment. this is nonsense, isnt it?

sorry for the hijack ;-)

I asked for help several times before we started getting respite/DPs for ds by then 10 (ASD/LD). I get the impression older children are more likely to get support, and then only when the needs of the child, or (second) the needs of other children are likely to be unmet. I have no idea why help is rarely available to families with young disabled children. We did not get respite until my health had failed and I was no longer able to meet some of ds needs. I have no doubt that ds 24 hour caring needs were part of the reason my health failed.
The thing that got SS to not dismiss us was a medical professional (ds Camhs specialist) writing to say we needed help. I also keeled over whilst trying to get a reluctant ds to his hospital appointment, so another professional witnessed ds at risk due to my poor physical health (I could not protect him whilst unconscious). We started with a carers assessment and from there went to a child in need.
I can only suggest asking repeatedly, and especially getting the professionals involved to write for support if they feel strongly your children will suffer harm without that extra support.
Hang on in there.

Hi all and thanks for your helpful replies. We have had assessments done in August and even before the assessment she just glossed over direct payments and said it was something to think about at a later date which at the time I fully accepted. We were then discharged as she said all of my son's needs would be met in special school when he started in September. However since then thing have become increasingly difficult and my main concern is time with my daughter as school wise it's going to be a difficult year. Different SW was out last week and did another assessment but the whole time making me feel like I have it easy compared to other families who have all been refused. For example a single parent with twins was refused so she's basically saying I probably have no chance. School are fully supportive which is great. Will just have to keep everything crossed!