Can I claim dla before a diagnosis?

[Crawling]

I have to pay 30 pound a month for dd to attend a specific play group that has small groups and a sensory room for dd assessment process as she is considered too high needs for mainstream school.

Most hcp agree dd is likely to get a diagnosis of autism with moderate functionality. I am struggeling with finding enough money to fund dds extra needs which are constant through the day and through some of the night. I also reqiure help for many of dd day to day needs. Can I claim dla for her even though shes only half way through diagnosis? is there any drawback to claiming ( if I can) before a diagnosis?

hi there u can claim dla befre ur dd is diagnosed,my son has diffrnt difficulties regarding possible dyspraxia thats affects his speech and i claimed as i take him to private swimmin lesson and stuff and was alot of money and would help towards this,i got it and i am currently awaitn pediatrician appoinment. ur gp needs to sign the form and i put all the meeting letters from his nursery and detailed report from our OT,and thy will research any other infromation they need hope this helps.

Hi Crawling, as I said on a previous thread, DD1 still hasn't got an official diagnosis and she is 7 now. She has been 'in the system' since 2 years 9 months and has been getting High Rate Care since she was 3.

As a general rule of thumb:

-Up to 1 hour care needed in the day - Low Rate Care
-Frequent care throughout the day or at night - Middle Rate Care
-Frequent care throughout the day and either one prolonged period up at night, or several shorter periods on at least 5 nights out of 7 - High Rate Care. Note that 'night' is generally taken to be 11pm-7am, so if your child is a very early waker and you have to be up with them for safety, you can still satisfy the HRC criteria even if your child 'sleeps through' from when they go to bed until that point.

'Care' can include supervision as long as it is active and is above and beyond that usually required by a child of their age.

Yes you can. Look at Cerebra Guide for help
Do not be surprised if you are initially turned down
Anecdotally the Carers Charity here who help people fill in the form say everyone without a dx has been turned down in the past year - so just assume that they are trying it on if that happens and be prepared to appeal. usually they overturn the decision on review and you never need to go to formal appeal - the DLA gets backdated to the date you applied (or rang up for the form). I think they are just trying to put people off claiming by making them appeal.
Check if you have a local carers charity - ours do home visits and help you fill it out to make sure you are giving the right info to get it through.

I would echo the first part of what Agnes says - I was turned down for DLA for DS who did not have a diagnosis when I applied. Now (in the last fortnight) he has got an ASD diagnosis. I asked for reconsideration which was still BEFORE the diagnosis - I was turned down again. I didn't feel thay'd even really considered the additional info I sent in - got the decision back less than a week after I posted it off!

So now I have asked to Appeal. That had to go in pre-diagnosis as well! As soon as I got the diagnosis I rang and got them to put the diagnosis as a note on the file. Don't know how long it will take to get the written report to send to them. I am hoping that they will review and give DLA without a formal appeal.

And is it merely co-incidence that my older DS and my DD each with a diagnosis got DLA straight off? So I think Agnes is right about having to go through more 'hoops' if you don't have a diagnosis. My tip is to phone up for the form. You then get 6 weeks to complete it and if you do it by the date given, DLA is back dated to the date you rang up. If DS eventually gets DLA it will be backdated to April!

They also like to turn you down with a dx. Dd has autism and was turned down, we asked for a reconsideration - turned diwn again. Then we appealed - and got HRC.
Took 8 months to get DLA sorted!
Imo, they just try it on and see if you will go way.

The cerebra guide is great. Also, check with your council or CAB - often they can help you in filling in the form.

I don't think it's always necessarily difficult. I claimed for DD pre diagnosis and we were awarded high rate care for two years based on the level of care needed with a statement from her teacher. Still waiting to even see a medical professional. The only thing I can think on as being mitigating circumstances is that we have two incident reference numbers from the police for situations where she put herself at risk, and support from social services regards her needing assessment.

Process took four weeks. Start to finish.

Yes apply, I waited until we had a dx and I am now kicking myself. I know a few people who have been awarded dla for their dc, pre dx and indeed one has HRC and the only proff their dc has seen is the paed once.

Thank you I have phoned and the form is on the way.

Lougle dd won't sleep before 11 then usually wakes up at 8 she co sleeps as she sometimes gets out of bed at night she also requires frequent care throughout the day is there any chance that may meet the criteria for the night requirement on High care rate ?

It's unlikely that she'll meet the high rate care criteria if she is asleep by 11 and then doesn't wake up before 8, tbh. Having said that, 11-7 is a notional night time. If your house hold normally shuts down from 10-6, say, then you may be able to argue that she is awake for an hour in the night.

Co-sleeping won't count because to be 'caring' you have to be awake.

To give you an idea of what I said to receive high rate care:

My DD resists sleeping for up to 3-4 hours at bedtime, and is up several times a night, she had regularly woken for the day between 2-3am, but as early as 11:30pm before. She wanders at night and has hurt my son in his sleep before (used a pencil to poke him awake). She has been able to circumnavigate my security measures to escape the house, and been brought back by the police (hence incident reference). She likes to play in the bathroom, and I have had to put alarms and locks around the house to prevent her getting into risky situations as she has no awareness of the danger of drowning or playing with sharp objects or burning herself, and certainly doesn't understand stranger danger. She would keep her siblings awake all night if she did not have her own room, which I have had to alarm to wake me when she does wander.

I haven't seen any professionals yet either, but the school have supported me, her teacher and I have a behaviour book where we note her behaviour down, and we are being supported by a CAF to try and put into place appropriate care for her own safety and my own health (I am disabled too). The school have tried no end to get a professional involved actually. CAMHS have just bounced me back, despite a social services report recommending their involvement, and a GP referral, and am now waiting to see the paediatrician (referred by school), six months waiting time apparently.

Get some assistance to fill it out.

I took the Cerebra guidelines, and then went to citizens advice bureau and we talked about my daughter's care needs and where I was struggling and what would help, and she filled it out for me. I can't write you see, so it was just easier, plus I had the support there if it was refused with the appeal.

Sorry should of been more clear she is never asleep before 11 usually I put her to bed at 9 but I usually get her to sleep at 12ish she sometimes wakes up and wanders around the house without waking me which is why I co sleep so she wakes me if she leaves the bed.

Bear in mind though, that it has to be true

For example - if you co-sleep and your DD wakes every 2 hours for 15 minutes, but then you have to stay awake for 5-10 minutes to make sure she's asleep in case she wanders, then you are 'awake' for 20-25 minutes at a time, 4 times per night.

If co-sleeping means that your DD sleeps through, then you wouldn't qualify for high-rate care, even though you shouldn't 'have' to co-sleep at that age.

Why do you co-sleep? Can you expand on that? How often does she get out of bed at night if you don't, what happens then?

This is where you have to be really detailed, Crawling. Talk about how long between putting your DD to bed, and DD finally settling to sleep. How many times DD gets up in that time. What her behaviour is like. Does she do anything risky? The fact that you have to share a bed with her so you can be woken when she does wander, how often she wanders a night, what she gets up to, what other measures you have had to put into place to keep her safe. When she usually wakes for the day, how she behaves if you try to put her in a safe place until a more decent hour if this is the middle of the night.

Really go into detail about the difficulties, don't miss out things or generalise and forget or gloss over the bad stuff, because they won't read into things and make assumptions, they will look at exactly what you write, so if it doesn't give them an accurate idea of how difficult nights are, you won't be awarded.

also I have seen the figures are they per month or per week

x-posted

So, what you are saying is that co-sleeping doesn't stop her getting out of bed. It just allows you to wake.

Ok.

So - how often does she get out of bed per night? On how many days per week? What's best and worst case scenario?

Also, what would happen if you put a stairgate on her door? What would she do if she woke?

DLA figures are per week.

I talk about the worst nights and then how often they happen, which is regularly for me, although with very careful behaviour management I have been able to decrease this a bit, this is the sort of thing the DLA allows me the opportunity to be able to do.

So weekly, the night problems occur more than 50% of the time, so at least four nights from seven. And perhaps one good night, and two reasonable nights. (and one zombie mummy)

Okay thank you with co sleeping she wakes twice a week and attempts to climb over the stair gate to go downstairs where she runs the hot water tap and turns all the cookery rings on if no co sleep she will do this every night but she is never asleep before 11 sometimes if I'm lucky she will fall asleep just after 11 but mostly at 12 she always wakes at 8.

Ill just have to wait and see what they say I'm only hoping for middle rate care anything else is a bonus she certainly is not as bad at night as your dd rabbits.

When she wakes to try and go downstairs, what time is it usually, and how long are you awake for?

Once you have your decision, make sure you notify tax credits and other places, I've been able to apply for carer's allowance, had a caring premium added to my income support, had my child tax increase and had my housing benefit and council tax benefit reassessed and come back with deductions removed, thus full amount, although still only two room allowance, despite my children needing separate rooms for safety.