Claiming DLA before any Dx - were you successful?

[bedelia]

I've been advised by DS2's EY lady to put in a claim for DLA for him. He's only very recently been referred to the CDC for assessment - we think he may be on the autism spectrum. He's a bit of a handful, let's say (still my little angel of course!) and we could really do with the extra if we're successful as I've had to drastically reduce my working hours due to his reduced nursery hours and lack of sleep (SE and WAHM, so usually work while he's at nursery/in the evenings).

Unfortunately though, we have very little in terms of "reports" - currently only the one done by the EY Lady. There are other professionals involved with him (HV, Ed Psych, continence nurse, etc) who I can note down in the form, and I'm hoping I may get a copy of the CDC referral before I have to send the form off, if it might help.

Am using the Cerebra guide to fill in the form and have pages of additional notes to explain DS2's needs, BUT I'm wondering if the lack of "evidence" (reports, letters, etc) will let the claim down IYKWIM?

I've read about others successfully claiming DLA before diagnosis, and was wondering how much supporting "evidence" you needed to send, whether a lack of reports means it's less likely to be successful, etc.

Also, if we're not successful this time, how long would we have to wait before being allowed to make a fresh claim?

Any advice would be wonderful

[fairgame]

I claimed before ds was diagnosed and got mrc/lrm. School suggested that I apply as he was extremely challenging, I had reports from ed psych, ot, behaviour outreach and salt. The dla people rang school during the assessment I guess to check out that it was all true.

[chocnomorechoc]

In theory DLA is based on need not on dx.

We applied before a dx and were turned down despite tons of reports and evidence. We were refused on reconsuderation again and by the time we appealed (some 5 months later) we had a dx and were awarded HRC. So in my experience I would say a dx helped but I know people who have DLA without. Just apply. If you have to do down the appeal route, it will be a few months until you reach stage and DLA is then backdated to the day they received your application.

[chocnomorechoc]

DLA awards seem to be a bit of a list lottery depending who is reading your application and you need a little bit oft luck

[2boysnamedR]

Ds got dla around 2.5 so no dx then. I did have quite a few reports. I have been reasonably lucky with both boys. I found that with ds2 I had tons of reports so he was awarded in weeks ( pretty sure it was all based on reports) ds3 took longer so I suspect calls was made. He got Mrc and hrm before his asd dx.

My elder son got a new dx during a long award period. Hmrc said they didn't need to know. Only change in symtoms

[Schrodingersmum]

Yes, we got DLA prior to diagnosis, no reports and I refused permission to contact the useless school and GP. Wrote the application myself but I am a nurse. Very pleased with result, use the cerebra guide

[Pebbles72]

I used the Cerebra guide too and applied before diagnosis. My DS was awarded HRC and LRM. We have just had our first renewal with and arm full of diagnosis, a statement and residential specialist school and the award has stayed the same. He was in mainstream (all be it failing on a part time timetable) without a statement when we first applied. For both I have kept a diary of his night time care needs which I think has helped.

[deadwitchproject]

DT1 received DLA before diagnosis and all I had in the way of reports was a letter from the senior Consultant who carried out his hearing test. She detailed her concerns about his social communication difficulties.

DT2 received his shortly after diagnosis and I sent in a copy of the Paediatricians assessment.

[BlackeyedSusan]

dd got hers with a diagnosis of hypermobility. I suspect dyspraxia too which we do not have a diagnosis for.

[bedelia]

Thank you all, this has been really helpful! DS is more difficult to manage as he gets older. I've been worried about ruining his chances for getting DLA by applying too soon, being refused, then having to wait to apply again. Keeping him safe now is becoming very problematic. Car is essential, but I'm already struggling to afford to run it. I don't think we'd get any mobility as he's too young, but a little extra would really help me keep the car on the road and build a bigger fence he can't climb over, that kind of thing.

Schrodinger - interesting that you refused contact with the school - DS is at nursery, and while they acknowledge his difficulties things are problematic (reduced hours, very little communication, and NOTHING written down). I'd hope they could make calls to other professionals, who would probably be more forthcoming!

Pebbles - I've been keeping a diary Did you send copies of the pages, or just use it to answer questions?

[Pebbles72]

I sent wrote brief details from my diary onto one sheet which showed what times he went to sleep and woke up every night and very brief details of his behaviour and supervision needs whilst awake e.g. Bed at 10pm. Asleep 11.30pm - 2am. Awake 2am-4am worrying about school, pacing house, very agitated, needing close supervision. Asleep 4am- 8am. I have also kept the actual nightly diary just in case but have not needed it.

[DuploTakingOver]

Yes DS got MRC before diagnosis. I did have paediatrician letter saying suspected ASD (has since been diagnosed) and copy of his nursery risk assessment and EYFS info. He got the same rate as DD who was diagnosed with ASD at the time I applied.

[bedelia]

Update and a question:

Very nearly ready to send the form off. The date I need to send it by is early next week (plan to send it 1st class registered to make sure it's on time).

Asked DS's class teacher to fill in the section "by someone who knows him" last week and gave her the form. Explained I needed to finish a couple of sections and send ASAP. Next day she told me that SENCO would be filling it in, and also wanted to be the named contact for nursery. I was a bit [puzzled] as AFAIK SENCO doesn't see much of DS and is ridiculously difficult to get hold of!!. But okay, I'd see the form and what she wrote before sending it.

Fastforward to now - I still don't have the form back. Left an urgent message with the office as Senco wasn't available as usual! saying I need the form back on Monday, and can send her statement on later if she hasn't had time to complete.

For most sections, I'd written "see separate sheet" in the explanation boxes, and (luckily) kept these back when I gave the form to CT. Also have a really good "statement" by another involved professional to support my claim Have just finished printing off a DLA claim form from the Gov website so I can at least finish my explanations/descriptions and copy over details which need to go in (just hope I have time to photocopy it all and send before PO closes!).

But what if I don't get the form back in time?

I have a separate sheet with the dates stamped on. Could I send the printed, filled in copy with the dated cover sheet (and an explanation for why I've had to do this)?

[bitbap18]

We got awarded lrm/mrc before diagnosis and with no evidence, all just using the celebra guide.

As for date on form etc, if not returned by that date, they will only pay from Monday following when form is received. If received by the date, will be backdated to the Monday following when form requested.

[chocnomorechoc]

OP, I would not worry too much about this section. it is not a must and I know not everybody completes it. just send it without. once you have it back you can send it in later on (if you think it is any good )

[bitbap18]

I didn't have that section filled out, and it wasn't required.

[bedelia]

Thank you all for your replies.

I don't mind whether or not the statement is filled in. Getting the paper form back is the problem! I'd called to have the form sent out (it's a stapled booklet), so if the claim is successful it would be backdated. Seems a shame that DS could lose out on a few weeks of backdated payments because Senco is hanging on to it.

[AndNowItsSeven]

With hindsight you should have photocopied that page especially when giving it to a school nursery.
What they write may well be detrimental to your claim.
Phone up Monday morning insist for the form back and NOT filled in. Photocopy the page and give them that page only then send it in after the form only if it is supportive.

[AndNowItsSeven]

School or nursery

[AndNowItsSeven]

In answer to your question dd aged eight at the time was awarded MRC and LRM for two years without her ads dx.