To worry that too high a rate of DLA has been awarded to son with aspergers

(26 Posts)
RolandRatsHat Sat 08-Mar-14 20:24:37

My six y o son was diagnosed with aspergers / high functioning autism last year. I recently eventually filled in the gruelling DLA form for him, expecting to maybe get low rate care awarded. I was factual and everyone, including professionals, told me to do it on worst type of day case, although I did acknowledge he has good days too.
I'm flabbergasted that he has been awarded low rate mobility and high rate care. I included psychologists report and Individual Education Plan as is on special needs register, though not statemented.
Please don't think I am bragging here, I really am not. I'm just worried that they have over awarded him and wonder if anyone has experience of this?
They have justified the higher rate care as needing constant supervision in day due to risk to self /others, which i understand. But they said "and you also need someone to often be a awake at night to watch over you often, or for a prolonged period, So that you do not cause substantial danger to yourself or others'. Yes, the support at night is needed sometimes, but I ticked that he needed watching over because of behavioural problems/ anxiety, not danger to self.
Am I getting too het up or should I be concerned? I don't want to end up owing DWP!!

HadABadDay2014 Sat 08-Mar-14 20:34:17

You was truthful and all the doctors and school ect have backed up your cliam. I highly doubt it was mistake.

BumpyGrindy Sat 08-Mar-14 20:35:11

Why don't you ask on Mumsnet Special Needs?

RolandRatsHat Sat 08-Mar-14 20:43:50

Good idea, have posted on there. Thanks

MisForMumNotMaid Sat 08-Mar-14 20:44:54

The thing with DLA is it isn't as the mass media say and an easy thing to claim.

You know how complex that form was to fill in and then how long the process took to assess. You know just how many professionals you detailed in the boxes and probably they contacted.

Its not awarded on your word.

Its on the word of you and multiple professionals, and detailed professional reports. Its not a decision on just one head its on lots.

I do know what you mean about owing DWP. I ended up with a child tax credit situation a few years ago and was very upset by it. It did get resolved though.

Have you had a bit of a battle going through the assessment process? Do you think you might feel like you're still a bit in battle mode and reacting defensively as a result?

ohtowinthelottery Sat 08-Mar-14 20:51:47

The Higher rate care is usually awarded when the person needs substantial care in the day and at night. If you have to get up to your DS regularly at night to keep him safe/administer any treatment etc then he will qualify for the higher rate. At night means after you would normally be in bed and before you usually start your day. You would not normally need to get up to a 6 year old on a regular basis because they are anxious or they have got out of bed and are a risk to themselves although no doubt there will be MNetters who come on here and say their 6 year old doesn't sleep and they don't get DLA

RolandRatsHat Sat 08-Mar-14 20:57:35

Mis, thanks. We were lucky with the assessment battle. But ds dad, my ex, was very up accepting of his differences, and i can imagine him being furious that we get any money to support him!
Yes it was complex and not just on my word. I have just seen on a few threads that high rate care component is awarded if you have to provide care in the night, not just due to risk, but also emotional etc. just seems odd to get money for it, but it's his money, not mine. Not really sure how to use it though, apart from obviously enhancing social activities and opportunities, which have not really been able to do financially till now. It's not like I am going to get a super nanny in for night time anxiety attacks!smile

Wantsunshine Sat 08-Mar-14 20:59:15

Don't worry you won't end up owing. Maybe you are so used to the hard work (not that you wouldn't want to look after you son just can't think of the that you don't see it as anything special just doing what you do for your son. Clearly you work hard to take care if him and meet all hiss needs and so I can't see why you don't fully deserve some additional help in the form of DLA.

RolandRatsHat Sat 08-Mar-14 21:04:34

Thanks. I'm a full time working single mum of two. My son is at mainstream school though so I was surprised at the award, but the special needs worker contributed to the form and the psychologists report talked about his abilities as well as challenges. Maybe I should just chill!
How often do they reassess, does anyone know?

minsmum Sat 08-Mar-14 21:06:25

When we applied for DLA for my son the Dwp phoned me to check if I was having to get up in the night regularly with him as that would have changed his award. As I didn't he was awarded middle rate of care and low rate mobility

mrsjay Sat 08-Mar-14 21:24:23

your son will need a lot of care and if you filled the form in properly and god is it a long form your son has been awarded the right amount dont sweat it . it used to be every 3 years

crunchycrisps Sat 08-Mar-14 21:27:09

DS has AS and gets HRC and LRM as well. I dare say there are many more children with AS who should be getting that rate but it's often hard to get the evidence. For DS we use it for gadgets and games as this is the main way he communicates.

You should be entitled to carer's allowance too, I see that you're working f/t so can't claim while doing f/t hours but may be worth bearing in mind in future (I had to stop working due to DS's SN so it was useful to have that to fall back on).

mrsjay Sat 08-Mar-14 21:33:02

\i would imagine you are quite a light sleeper and always on edge at night OP dont worry about it at all

Marne Sat 08-Mar-14 21:33:20

My dd1 has As and gets middle rate, dd2 has HFA and gets higher rate care and lower rate mobility. Dh is sure dd1 will loose her dla altogether when it's renewed but after reading this thread it looks like that won't happen.

We spend dd1s dla on trips out and any activities she wants to take part in out of school, dd2s dla goes on replacing all the things she breaks ( she cut her clothes up last week and has eaten the sofa, tbh the dla does not cover the damage she causes ), if we have any money left it is spent on equipment to help improver her low muscle tone and special shoes for her hypermobile ankles.

MisForMumNotMaid Sat 08-Mar-14 21:36:21

The reassessment date is usually written on the award letter.

Have you notified tax credits as your award should also go up due to the disabled child element.

StrawberryGashes Sat 08-Mar-14 21:50:59

His care has probably just became normal for you. I didn't claim for 2 years as I thought I wouldn't get it as my son was fine. Doing the DLA form brought back to me just how different he was to other children. I was awarded the same as you and they had many different professionals reports and wrote to the school too so it wasn't just based on what I had said. You haven't done anything wrong, your son is entitled to this money to make all of your lives a bit easier.

RolandRatsHat Sat 08-Mar-14 21:53:13

Thanks everyone x

StrawberryGashes Sat 08-Mar-14 21:54:07

Look up cinema card, bus card and rail card, also register at your gp surgery as a carer and ask your local authority for a radar key.

HadABadDay2014 Sat 08-Mar-14 22:02:04

Use the dla money to give your other child a break for a few hours.

Dd is so understanding of her brother, but I feel that she needs time to do things that she can't do because if DS comes along it would spoil it for her.

RolandRatsHat Sat 08-Mar-14 22:07:51

HadABad, that's a good point. Other ds is very understanding too, especially for a four year old! But he does get upset by his difficult emotions, and does have mote typical young boys's just logistics when a single I use some DLA to pay for some weekend child care for youngest? I'd feel bad. Maybe it's more clubs and classes for them both.

RolandRatsHat Sat 08-Mar-14 22:08:28

Strawberry I will look those up, thanks

HadABadDay2014 Sat 08-Mar-14 22:19:32

I am lucky that MIL every few months has ds., then that weekend we do things that we can't do.

Like go to soft plays, it's too crowded for DS or swimming which is too busy on the weekends.

x2boys Sat 08-Mar-14 22:34:07

my sons autistic with some learning difficulties he is three we are awaiting the dla decision its very gruelling.

manicinsomniac Sat 08-Mar-14 22:41:11

Given the nightmare many people seem to have accessing the support and funds they need I seriously doubt you have been given more than you are entitled to.

Relax, enjoy the money and give you/your son/s a break or treat now and then!

Katinkia Sun 09-Mar-14 00:15:45

I have one austistic son and one aspie son, both get HRC and LRM. I have to change bedding/do comforting etc in the night so I am awarded it. I'm often short on sleep and end up napping during the day, which I hate doing because it's the only time I am on my own. Anyway, don't feel bad about it, use it to help you live your life.

I spend some of mine on a cleaner to help with the housework.

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