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DLA, HRM and ASD

(25 Posts)
mjmooseface Tue 02-Jun-15 18:39:43

Hello again!

I have a potentially complicated question about our DLA claim, hoping some of you will be able to help! smile

Our first DLA claim was awarded verrrrry quick. (13 days from ringing up for the forms to be sent out, to first payment.) High rate care for 5 years, awarded in February of this year. My son was 2.5.

However, last week, we got a new form as my son will be turning 3 in October and could be eligible for the mobility component. So here are my questions...

1. Do I re-fill out all of the care questions? Or say there is no change as it was just a few months ago? Will they look at the last claim from a few months back and the supporting evidence sent with it? How likely is it that this will change?

2. What evidence could I send regarding DS' mobility needs - constant supervision needed when outside; PICA; no awareness of danger; refusals to walk and general bendy-ness and clumsiness being the main concerns.

3. I know that a lot of people who are refused mobility on the first go, have their care award reduced, hence my question on if I should re-fill the care questions out and maybe provide more supporting statements/evidence?

4. When do I actually send this form off? They have no date on. Do I send them after my son turns 3, or x amount of time before he turns 3? Because if it is when he turns 3, why did they send these forms out 5 months early?!

If I'm honest, I don't want to put the high rate care for 5 years award in jeopardy, but I believe we have a strong case for high rate mobility... has anyone been awarded high rate mobility with a child with ASD and the concerns I listed above?

Any advice is greatly appreciated!

zzzzz Tue 02-Jun-15 18:44:12

Do you get any mobility at all?

mjmooseface Tue 02-Jun-15 18:48:41

Not right now because DS is under 3. That's why this new form was sent out, even though he doesn't turn 3 until October!

zen1 Tue 02-Jun-15 19:19:10

My DS has ASD and was awarded HRM at 3 and it sounds like your son's mobility problems are similar. I only get low rate carers though (which I agreed with), but this was awarded at the same time. The evidence I sent off for the mobility component were physio / OT / Paed reports (for bendy ness, much more likely to fall than NT children, can't climb stairs) and reports from his mainstream nursery and SN nursery stating he had no awareness of danger, was likely to run off, no understanding of roads, refusal to walk etc.

I sent the form off a couple of months before he turned 3 and I've got a feeling that by the time they'd processed it, he'd just turned 3 which is why I didn't have to fill in the forms again. The Cerebra helpline might be able to advise you on whether it would be a good idea to submit more evidence regarding your care claim.

mjmooseface Tue 02-Jun-15 19:36:16

Thank you zen1 that is really helpful! smile

I thought that for a 3 year old to get HRM they had to be getting HRC too, though? Or do you get the low rate care now?

bedelia Tue 02-Jun-15 19:37:08

Contact a Family have a really useful guide to claiming HRM for children on the spectrum. It goes into detail about the routes by which HRM might be awarded.

Best of luck to you - it sounds as though DS would benefit from the mobility component! I have read of others successfully claiming the higher rate, particularly when they have evidence to support it smile

2boysnamedR Tue 02-Jun-15 19:40:41

From what I remember you have three months either side of them turning three.

I got hrm at three. My son never leaves the pram outside of the house unless we are in a secure area like a park. Never.

Against my better judgement I let him out the pram in costa today. He disappeared in the blink of the eye to sit with a stranger! I then had to pull him along the floor to his pram.

zen1 Tue 02-Jun-15 20:04:59

I've always got HRM and LRC. I think they view them as separate issues (I don't have to get up more than once a night to my DS for example and although he requires a lot more assistance than a typical child of the same age (now 6), he in no way requires HRC.

ChipsAndRedSauce Tue 02-Jun-15 23:50:20

Zen is your ds have hyper mobility syndrome in addition to his ASD. Or another physical issue.
Op no child with asd can receive HR mob without HR care unless there are other factors. If your ds is hypermobile then yes from the information given you ds could be entitled to HD mob.

zen1 Wed 03-Jun-15 10:18:02

Chips, yes my DS is hypermobile and also has low muscle tone in the lower half of his body. Since being awarded the HRM, he has also been diagnosed with severe dyspraxia / DCD. When he was 3 though, we hadn't been given any medical explanation for his bendiness / clumsiness other than hypermobility. I didn't realise that children with ASD cant receive HRM without HRC unless there were other factors.

ChipsAndRedSauce Wed 03-Jun-15 11:19:22

Am glad you ds got the award he was entitled to. My dd is hypermobile also with asd. I wonder if the is a link, I know of quite a few children with both conditions.

zen1 Wed 03-Jun-15 16:23:49

Based on anecdotal evidence, I believe there is a link. I think I read about a possible connection on a thread on here.

FanjoForTheMammaries Wed 03-Jun-15 16:29:32

One of the criteria for HRM is "severe mental impairment". So HRM is not easy to get for ASD unless there are severe learning difficulties. Needing constant supervision outside would generally qualify for LRM.

zzzzz Wed 03-Jun-15 17:58:41

I really don't understand this. Autism surely CAN be severe mental impairment? I'll be honest I didn't challenge it but I do think with my sensible head on that ds should get hrm. I think it because he doesn't just need constant supervision on the roadside, he also needs almost constant restraint. I have a real worry about what would happen if we broke down on a motorway. We certainly could not wait on the side of the road outside the car shock What ARE you supposed to do???

I have no idea how I would prove we need it to anyone and am so grateful for the money we do get because it really helps that I have just let it go.

bedelia Wed 03-Jun-15 18:38:51

zzzzz - I'm not an expert (haven't even done DLA claim yet!) but know a couple of parents with children on the spectrum who have successfully claimed HRM and have read quite a lot on the subject.

You're right that ASD can be considered "severe mental impairment", and is one of the two avenues through which an award of HRM can be made. This route is also reliant on the recipient having HRC. The other route to HRM is "virtually unable to walk" - this doesn't rely on the recipient having HRC, and can also be valid for children on the spectrum. The guide from CAF I linked to upthread explains it all in detail.

From what I can tell, ASD is so complex (and presents so differently from one person to the next) that many who could be eligible for HRM are overlooked - the decision makers are not experts - and awarded LRM instead. At least one of the parents I know of whose child was awarded HRM had to take it to tribunal sad but by doing so was able to properly explain and demonstrate why DC needed the higher rate.

I'm by no means saying that all children with ADC's should get HRM, but some have difficulties which would make them eligible if it were possible (through proof, documentation and explanation) to help the decision makers understand their difficulties.

2boysnamedR Wed 03-Jun-15 19:23:50

Ds gets hrm and Mrc and he's three. He had no diagnosis if asd at the time of the award. The mda was booked up but hadn't happened until after the award.

My ds just can't and won't walk along a road. He falls to the floor and trips me. I goes limp, he hits parked cars etc so his legs work ( I suspect he has dyspraxia as he falls even inside all the time).

FanjoForTheMammaries Wed 03-Jun-15 20:04:34

Yes..not saying that it's right. .but that does seem to be the criterion

AndNowItsSeven Wed 03-Jun-15 20:11:53

The DM notes for the reasoning behind my dd's LRM ( not HRM) state "although x will not walk it is because she chooses not to walk rather than an inability to walk."

zen1 Fri 05-Jun-15 06:37:51

DS trips far more often than NT children, and has impaired 'saving reflexes'. He sustained a nasty gash in his head last year which required a trip to A&E as he tripped and landed straight on his head without putting his hands out. He is 6 and still can't do stairs / slopes without help. But I still find that easier to deal with than the running off and / or refusal to cross thresholds of shop doorways.

mjmooseface Tue 09-Jun-15 08:44:04

Thank you all for your replies!

Should I redo the care section or if I say there has been no change, do they look at the last claim? I'm only asking as I only just filled that form out a few months ago and whilst I don't mind doing it again, if they were to just look at the last claim might that make the award go down? We got HRC without sending in the diagnosis letter as we didn't have it yet so I will probably send that in this time.

Ah, all so complicated! Hopefully when this is done, we won't have to redo the whole claim for a while!

AndNowItsSeven Did you appeal that reasoning that your child chooses not to walk rather than an inability to walk? Amazing that they can tell you the reason your child won't walk when they don't know them! hmm

ChipsAndRedSauce Thanks for the clarification... I thought HRM was only given to 3 year olds who got HRC, too. I didn't realise that only applied to children with ASD.

Thank you bedelia for the link, I will check that out now! :D

Thanks 2boysnamedR I will aim to send the form off by August then as that will be 2 months before he turns 3!

I already filled out the mobility section on our last claim thinking they would just look at that when he turns 3! Guess not lol

What evidence have you used for the mobility part? I'm going to ask the Nursery SENCO and son's keyworker to write a statement and see who else can help. Healthcare professionals don't seem to be there when we go out and don't witness the refusals to walk etc! We have a referral to OT going through, aswell, for other sensory issues that affect his being outdoors.

2boysnamedR Wed 10-Jun-15 00:16:36

I keep my dreaded dla as a PDF then I just change the bits that have changed. It's not so daunting that way.

I'm dyslexic and I could never fill it in by hand. So when he turned three I didn't rewrite the whole thing.

I had a personal statement from portage at two but didn't include one last time.

mjmooseface Tue 07-Jul-15 17:49:03

2boysnamedR Thanks for your previous post! I rang DWP to ask for a copy of our last claim form. I felt like the lady on the phone was trying to put me off by saying it would take a minimum of 2 weeks. Well, I rang on a Thursday afternoon and I got the copy on the next Monday morning! So I have that now which will help me to know what has changed since we last claimed.

Now with this new claim, I'm going to do what you do (keep it as a PDF) so I always have a copy of what I've written and when so I know if and when something has changed or not been mentioned etc! Is it easier for you to fill things in on the computer than it is writing by hand then, with your dyslexia?

Do the DWP keep the evidence you keep from claim to claim or do you need to re-send it or send newer pieces of evidence in if you have them? Nursery wrote a statement for his mobility and it includes his summative report showing him as not meeting the targets for 8-20 month olds and he is 33 months old!! sad So sad when you see it written out like that!

My son, 16 severe autistic, has been getting HRM for years and now gets enhanced mobility for PIP. No evidence was needed really,they just based it on his lack of safety,lack of awareness, needing someone constantly with him and guiding,holding,supervising and keeping him safe, along with his behavioural issues

BlackeyedSusan Sat 11-Jul-15 11:15:11

I have been told that most often it is lrm for autism. the hrm is very strict with the criteria. I guess it depends on the severity of need. I think whatever you do you are going to have to paint it in the worst light possible. his worst day. do not say good day ever.

mjmooseface Tue 14-Jul-15 19:11:34

I have heard similar, BlackeyedSusan, that HRM is hard to come by especially for ASD. But I've sent me form off today, signed for. I included A LOT of information and supporting evidence and things that might not be relevant but which I sent in anyway! lol So fingers crossed! :D I am not expecting the same speedy decision as I did back in February, mind!

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