Wrong DLA rate for son with Aspergers/Too high?

[BookWorm1984]

Hi everyone,

I'm new to this site and starting threads but am really hoping to get some advice and/or reassurance.

My son was given a working diagnosis at age 3 of autism/Aspergers. We were never aware of DLA being a possibility for him so never claimed.
He is now 7 and this summer we pushed for another assessment to get a confirmed diagnosis because we were tired of all the what ifs. We got a formal diagnosis of ASD and she said he was on the Aspergers side of the spectrum.
We were made aware of DLA by a friend and Health visitor so we decided to make a claim. We were very unsure about it and convinced we wouldn't getnit as he is very High Functioning. We were very truthful on the form but also followed advice a worked on worse case scenarios even if not an occurance everyday.
Well a week ago, five weeks after sending forms we got a letter to tell us we had been awarded High Rate Care and Low Rate Mobility! We were and are completely stunned and concerned they have misread the information, that we might have unintentionally mislead them somehow?
On the letter it stated that we were awarded this rate based on he needs attention with bodily functions several times at short intervals through the day and needs attention with bodily functions once at night for prolonged period or more than oncefor short intervals. We can't figure out how they came to that conclusion.
We stated that he needs help wiping after pooing on toilet due to poor coordination, that we brush his teeth twice a day and wash his hair and bath him because of same reason and very poor attention span, and that he struggles with buttons and zips. They are the only bodily functions we mentioned on form and they don't take up the whole night, every night, just as and when needed if you know what I mean.

I'm really concerned we have mislead them or they got it wrong. I'm concerned that if I challenge it we will lose it all together. Don't know what to do so any help with this would be really appreciated.

Not sure what I'd advise you, but if it helps for comparison, our son with Aspergers (age 6) and similar needs (though we didn't write down anything for night time) gets low rate care and low rate mobility.

We help him with all the things you have put above, plus some help cutting foods, dressing, and other co-ordination, and he needs extra supervision near roads as he has no sense of traffic or road safety. We also help him with bath time, washing hair and toileting before bed.

We had asked a local charity for their advice before applying for DLA about the care rate of DLA, and they had told us that if it was less than an hour of care per day, it would probably be low rate, if it was more than that, middle rate, and if it was significant night time help (ie you are up several times in the night), then high rate.

In our case, they thought our son should get awarded middle rate, as we estimated we spent quite a lot more than an hour a day; but that we weren't getting up at night to see to him, so therefore he wouldn't get the high rate.

When the forms came back he actually got awarded low rate. We did wonder whether to appeal, but decided not to, as he didn't have a diagnosis at that point (he does now). But this does now mean that I cannot qualify to get carer's allowance - you have to be on middle rate or higher to do that - but I cannot work at the moment, due to DS' needs... so in retrospect, I wish we had appealed.

As your scenario is the other way round, I am not sure what to advise you - is there a local charity or group you could check with, without having to commit yourself to anything? Like you say, even if you think it is quite high, you definitely don't want to loose it altogether.

Sorry. that's probably not much help!

Thank you for your response. For night time needs we have to spend about 30mins settling him in to bed as he gets quite anxious at night. Then more often than not he will wake once and we will settle him again, but I don't consider that a bodily function need and that's not how we described it on the form. We also have to cut food up for coordination reasons.
The form gave time options for time spent on certain things and we haven't exaggerated on that at all. We saved the form before we printed and posted it and have gone over it several times to see if we have mislead them maybe or worded something incorrectly but we can't see anything like that.
Making me very anxious as I think they would just stop it if I went to them with this dilemma to cover their own backs.

I am going to see if there is anyone who could advise me further.

This won't help you particularly, but of the handful of people i know with Aspergers children who claim DLA, most get low or middle rate; though I do know of one family who get high rate, but their son sleeps very badly and they are often up for long periods several times in the night.

You have described your child's needs exactly as they are, and surely it is up to DWP to make the decision which rate you get, not your responsibility to worry that you have put you on a higher rate? You filled in the details; they then make the assessment and award accordingly? In any case, they will review it in two years time (when you then have to fill in all the forms again). You could have been claiming DLA since he was much younger, and you haven't; so if you are feeling bad about it, then just think of all the DLA he has missed out on during those years?

I think as long as you have been honest on the form, I wouldn't worry about it.

The bits your are quoting are actually just standardised phrases that go into the letter, and so I wouldn't worry too much about how they fit with your DS too much.

We currently get mrc and lrm, because they decided that the care we do at night wasn't sufficient to warrant hrc. It can all be a bit random, we were on MRC and HRM, then we had a zero award, which I had to appeal and then I was happy with that new decision.

Don't forget to apply for carer's allowance now, and let the tax credits agency and housing benefit (if appropriate) know too.

Thank you for responding @Chopstheduck.
I did wonder if the wording used on the letter was maybe automated, then maybe not an accurate reflection on the letter we submitted and the reasons they based the award on, but I'm scared to phone and query it as they can be real swines. It's for my son and I don't want to be the reason he loses it.
We went through the forms again to day to make sure we haven't put anything that could be misunderstood, we kept a copy of the form for future reference, glad we did.

I'm just struggling to get my head round their decision. We were only expecting to get LRC if anything and am imaging that they think my DS is severly disabled which I would never say he is. He is high functioning. So now I feel like I'm not doing enough for him to justify his benefit.

Part of me knows I'm going to have just acceptitnas it is for now and report any changes in the future, something I'm already dreading.
It seems like Russian Roulette trying to get DLA and I'm worried that when the time comes and he has learned to do other things for himself then he will lose it all together.

I'm quite stressed out about it all, don't know if you can tell lol!

It is such a hard thing to deal with. I cried when we got the first letter. Ds1 had just started using a wheelchair occasionally and we got HRM. It was like a punch in the stomach, for someone else to say, yes he is disabled!

How long is the award for? Surely at some point you will have to renew in any case and things will change as he gets older. The thing you have to remember though, is although things will change, the perceptions of what a child should be able to do will also change as they grow older.

My ds has improved significantly since we first applied in mobility and in other areas, but he still needs considerably more help than a typical child of his age, hence the dla award.

for example, you mentioned your son needs physical help with dressing, similar to my son at that age.

My son is now 12. He can physically dress himself, but he can't pick appropriate clothing, he needs help with weather and occasion picking, and getting clothes on that actually do fit him and not his younger brothers. He won't notice if something is back to front or inside out.

So, although he has improved in that he can physically dress himself, his dressing skills still aren't age appropriate and he still needs additional care in that area.

He has been awarded it for 5 years, they say that they may check in at some point in between? Again, that really surprised me, I thought it may be awarded for 2 years maybe? My gut call is some things will improve in next couple of years but obviously can't guarruntee anything with these things can we. But, I guess you are right in that although things might improve there still may be other needs and perceptions to consider.

I felt the same when we received the letter.
I feel like now though, I'm gonna be constantly looking for improvements in case I need to notify them. Five years is a long time really.

Apologies for sounding daft lol! Benefits really stress me out.

My 24 yo DS has ADHD. His current DLA is MRC/LRM but all the claims before that he got HRC/LRM. He was always up in the night wandering, and they consider "night time" to be the period after the rest of the household has settled down for the night, until they get up. Mine needed so little sleep he was always active in the night.

If you have checked over what you said and you have given accurate information then I wouldn't worry. As Pawan said, you have already missed out on several years when you could have claimed and didn't. Just be prepared that in 5 years time when you renew they may reduce it.

Thanks VelvetEmbers. His father very much feels that way. He is annoyed that we could have been gettin this benefit for our DS for quite sometime, at any rate. I'm a stay at home mom and he works full time so we struggle and don't qualify for any extra other than child tax. But we both feel we have not been misleading with the form. When we finished it, ready to send it we really only thought we had enough information to get LRC.

If you are not working Bookwork, then you should also automatically qualify for carer's allowance. Check on the DWP website.

If it makes you feel better, you could try thinking about how you could spend the DLA to make a difference for your son? I know I felt guilty somehow when we first got DLA, (part of the reason that we didn't appeal against the lower rate award I guess) as I didn't consider my son to be as disabled as other children - it was just our normal life - but it is awarded on the basis that they need more care than a typical child of their age - and that much is certainly true.

Have a think how you could spend it? Maybe put it in a separate account, and use it for special things for him? Other parents I know spend it on all sorts of things, from having a cleaner, so that they have more time with their child, to subsidising specialist holidays that are "quiet" as their DS wouldn't cope with a noisy/chaotic holiday.

We use ours to help pay for a weekly social skills group that our son attends, and we used it to buy him an expensive 3 wheel scooter (he can't balance or do a bike as his motor skills are quite poor). I have also attended a couple of courses about ASD, so have used it to help cover the cost of those - so that I know more about my DS' challenges and how I can best help him.

So maybe it would cheer you up to start thinking about things you could use it for that would be beneficial for your DS?

Thank you Pawan. I think it is hard as well because I associate HRC with severe disability and that worried me because he isn't severely disabled I worry I have lead them to believe he is somehow. I guess the award confirms that he isn't doing the things that they expect most 7 year olds to be doing and I worry that that's my fault somehow.
We have been looking in to how it is awarded and checking we filled the form in correctly and it seems that the high rate is awarded if they have day time needs and night time needs, no mention of those needs having to be severe. So, I think I'm going to have to just except it, report any changes in the future if there are and as you say, think about good ways to use it.
He has never been able to ride a bike due to poor coordination and balance, he is also very tall for his age so I can invest in a bike tailored to his height and needs.

We've just received dd's DLA award letter. She gets middle rate care and low rate mobility. She's 11, has no diagnosis yet (suspect asd/aspergers). I'm still trying to work out how they awarded that when ALL health care professionals tell me "she's fine"

Her needs sound very similar to your ds. We've decided that they don't make decisions lightly or quickly, they look into things properly. I'd just accept the decision, you know you were honest.

Thank you frazzledbutcalm, nice to hear from some feeling the same way.
I guess you are right, they don't seem to hand it out easily to anyone so I will have to trust the descion. Just blew me away, still does.

Also book ... kind mumsnetters 'in the know' have advised me further on other entitlements available once you get DLA. I've tried to post a link but I'm not very technical it won't work

In the mumsnet search bar type in: dd is entitled to dla

It should be the first one on the list, I posted a week or so ago for advice. Hope it helps.

I did a form for my son recently when he was 4. I stated that he refuses to poo on the toilet (he is now 5 and still won't do it!) and that he asks for a nappy for this (which we give him - one time we didn't, the sofa took a nasty hit). On the basis of this, they gave us the middle rate and said it was because we have to tend to his toileting needs throughout the day. I also worried I had mislead them, but looked through my form again and could confirm to myself that I had been as honest as possible! I think they just have to put you into a 'best fit' criteria.

I applied for my ds when he was 10 and got the same award with same reasons.

I'd put that ds doesn't turn off taps properly, doesn't wash his hands unless told and still needed support with wiping. I also said he needed this day or night if he used the toilet. I was honest and said he could need support anywhere between 2-7 nights a week.

I also thought it was too high and took me a while to accept the level. However many people I've met with children the same get the same.

Zombie thread. Suspect that OP has sorted out her issues 2 1/2 years later.