DLA/PKU/ADHD - Mandatory Reconsideration

[Mar1382]

Hi all,

I have a 6yr old who has an inborn metabolic disorder (PKU) and was awarded middle rate dla when he was about 2.

Since starting school it became apparent that there were more than just the PKU. He was diagnosed with ADHD, sensory seeking, has significant learning difficulties (at level of 3-4 yrs.) and is on the waiting list for an assessment for ASD.

I asked DWP to look at his case again as he needs alot more care and supervision in the home and outside. He has no awareness of danger, is impulsive and has to be watched all the time. Due to his PKU he has a strict low protein diet and can take a very long time to eat a meal and most of the time I have to feed him as he just won't eat. He has to finish his meals as they are all carefully weighed. He has problems with self-care and does soil himself daily as he 'forgets' to go to the toilet. It doesn't always become immediately apparent and can get sore if we don't notice or he doesn't tell us.

We sent reports from a speech therapist, child development centre and referral to educational phycologist and explained all the needs he has. I believe he should receive higher rate carers and lower mobility but they dont agree.

I will send the mandatory reconsideration but not sure if there is anything specific, we should say.

We had to do this the first time also and they awarded middle rate care.

Any advice/help would be amazing.

:)

What are the nights like with him?

Higher rate is for children with both day and night time care needs.

Middle rate is for day or night..

He does wet the bed, especially when his phenylalanine levels in his blood are above the 'safe range. We do try to limit drinks at a certain time but doenst seem to make a difference. He is more hyper when his levels are high and has even more diffuculty keeping his body still even more. He can take a while to settle on bed and does get up. I have found him sat at the tip of the stairs and even in his sisters bed who he has then woken up. He has got up and started playing, thinking as it was light it was time to get up. Waking us all up and having to the settle him. He has a habit of banging, whether it's his hands on his bed/wall or his feet. He doesn't seem to be aware he is doing it. He has no awareness.

Sorry for spelling errors. Apologies:)

@danni0509 My son has needs during day and night and he gets middle rate

From what I've been told @Mar1382 the decision maker has approx 10-15 minutes per form to decide if the child is eligible for DLA. If it goes to MR, it is looked at in more detail. Fingers crossed for you

How old is he?

How often does he wet the bed? How often does he wake during the night?

I think at 6 not being dry at nights is considered within the normal range. If you are up in the night with him frequently or he doesn't go to sleep till after you would normally go to sleep that's when higher rate kicks in.

Sorry I missed he was 6. I don’t think what you have said sounds massively unusual for a 6 year old overnight unless he has a lot of night waking. Bed wetting is considered normal until about that age

(DD doesn't get DLA but has been very late to properly toilet train. She's just turned 7 and the continence nurse said we could now get help with night time wetting if we wished but we have left it)

As far as I can work out it's not done on the severity of the issues, but on how much time you spend dealing with them. So it's not about the fact that he wets the bed, it's that it takes you 40 minutes on 2 nights out of 3 to get up and change the sheets. Be really precise about exactly how long per day (on the worst days) you spend feeding him by hand. With my autistic DD, it was really eye opening to me to go through our day and look at how much time I spend supporting her over and above what parents of 'typical' children do.
This is good: skybadger.co.uk/2018/08/20/dla-form-a-step-by-step-guide/
Good luck!

I did think that about bet wetting, that's good to know.
On a bad night he can wake 2 or 3 times and we have to explain its not time to get up and time to sleep. He would say he is not tired anymore and wants to play. He can take a long time to settle in bed as he is so on the go constantly. He never stops.
What about lower rate mobility?

How often are those bad nights?

As he is on a special diet and has to eat his daily amount of protein, it does take ages for him to eat. He can take 2 hours to eat dinner. Somedays it's just constant, one meal runs into another. He can't skip meals or medicines. It's so hard some times. He has an attention span of about 3 minutes so getting him to sit down is an issue

I would say 3 times a week with getting up. But every night is difficult getting him into bed and staying there.

Have a good luck at the cerebra guide. From what you have said and what I know of the system I would think that at age 6 he is probably on the right level BUT that’s only from what you have said and my limited knowledge of the system so it’s well worth asking for the reconsideration

The cerebra guide is really helpful, thankyou Sirzy

My son was awarded DLA at three,he has severe autism and learning disabilities,they awarded him Medium rate care and added on the low rate mobility at five ,The award was untill he was sixteen! It became increasingly apparent as he got older how complex his disabilities were and I did a change of circumstances when he was nine ,he was eventually awarded High rate care and high rate mobility under SMI rules,but I'll warn you I had to go to Tribunal .

There are a few groups on Facebook that can help with form filling, "fightback" is one that springs to mind for free advise

We didn't get mobility at 6 for DS who has ADHD but we got it at 8 despite him being better (he is now crossing some roads without help for example, he's now turned 9) because, I assume, 6 year olds are assumed to all need eyes-on supervision if they can walk at a normal pace.

Thank you all for your advice and help. Much appreciated.

the key to higher rate DLA is to lay it on thick about the night time care required.

You have to lay it out as the absolute worst case scenario. You might only have to deal with a night THAT bad once every couple of months, but on the DLA forms, you need to put that worst case down.

Its like.. most nights ds goes to bed, wanders around a bit before settling, and sleeps til about 3am, and is then up and down til morning... usually requiring me to have to get up to tell him to go back to bed, resettling him...etc

but on bad nights, he doesn't sleep for more than an hour, is constantly walking around, coming in my room, getting upset/frustrated, can't settle, won't sleep.. even medicated, and i am lucky if i get 3hrs sleep tops.

THOSE are the nights that go on the DLA form, not the 99/100 others when he's kinda ok, but not great.

Do not just lay it on thick. You have to be honest about the issues and how often they occur. Don’t make out things are more of an issue than they are. That is called fraud!

its not fraud if that worst case is true, i didn't say tell lies.

Then you say “on average 1 night a week is like x,y, z and the others are a,b,c”

You don’t lay it on thick. You tell the truth

Try benefits and work website - child poverty action group and citizens advice
All have advice about challenging DLA decisions

@JaceLancs Thanks, I will have a look. :)