AIBU to seek a mandatory reconsideration of my son’s DLA award?

[Blinmey]

I have just got my son’s renewal back, they have awarded him low-rate care and low rate mobility. However I think he should have got a higher award, he has autism, adhd and a gastrointestinal diagnosis. Whilst all his needs means he consistently needs help with lots of things, his gastrointestinal issue is one of the most significant as he soils throughout the day and night and with his autism he needs help with this (changing pants, washing underwear, washing hands, showering, hygiene). He gets up during the night and needs help with this, as he will do things like put soiled pants back on or not wash his hands or leave the toilet in a state. I put all of this on his form and gave the evidence which is letters from his paediatrician confirming all of this. The reasons DLA gave for low-rate was that he is at a mainstream school, he doesn’t have an EHCP and he’s described as being clever and happy.

He is 12.

Does this sound right to experts on here or should I be putting in a mandatory reconsideration?

No, for school he’s developed strategies such as making sure he sits down a lot (as moving makes leakage worse), or if it’s really bad he will take pants off and put in bag, then there might be some leakage in shorts / trousers as he isn’t wearing pants, but it’s not big stool so I’m guessing unnoticeable most of the time in terms of smell. He doesn’t clean himself or wash his hands properly though, which is a big concern and something I have to religiously monitor.

Yep this is the situation for our son. He attends an independent school fully funded by the council. Each place costs £70k per year, per pupil. It is an autism specific specialist school but it is independent. Many children with ehcps get fully funded places at all kinds of independent schools.

My son gets high rate for both two hes severley autstic with severe learning disabillties non verbal etc
But its not up to either you or me to judge what other kids are entitled to its down to the assesors.

MR is always worth a try. It sounds like due to night needs, MRC sounds more suitable.

My son is 10 and gets HRM and HRC. He has an ECHP and is in mainstream. He has 2:1 support but for physical reasons. He is behind in Maths but just missed out on exceeding expectations in English by like 3 I think it was.

Why are you so intent on trying to somehow catch the op out? It’s just so indicative of the type of bullshit prejudice disabled people face every day at the moment. You’re probably the type of person who thinks that because I am entitled to a motability car that I shouldn’t use it for anything remotely related to any leisure activities and I should literally rot away at home rather than do anything to make my existence any better.

Thats why they have a decision maker who decides on the rates.

There is a strong correlation between coeliac disease and ADHD. My daughter paediatrician for coeliac said there is even some potential causation there - and we found this to be true - we were looking at a referral for ADHD before DD was diagnosed with coeliac, a year on and her attention, focus, inhibition control etc are so much better. But there is such a strong push against medicalising neurodivergence, as some ND advocates say its part of who they are, not a condition to be treated or 'cured', so he explained that exploring medical factors for ND has become a bit 'taboo'.

You say it isn’t a race to the bottom yet that is exactly what your comment is.

I dont think YABU, but is the money you get used to pay for additional or extra care. It doesnt sound like it from your post. You are paying for a private education and you say you use the extra money towards the private school fees. No doubt you are saving the state money and ensuring he will be a contributing member of society but they wont see the logic of this.

He wouldn’t cope in a mainstream school… it’s needed for his disability. The DLA goes straight into an account to pay for private school (it only pays a portion of it). It could just as easily go into my account, this year alone I’ve paid over £1K for private gastroenterology appointments, £100 in private prescriptions, £250 for an updated ADHD report…

DLA will have no issues with OP using it towards private school. They don’t even ask about what it would be spent on anyway.

It just goes into my bank account into the general “pot”.

I would also say that it is paying for extra care as he’s in a class of 12 vs a class of 30, in a school with loads of transitions which is loud where he wouldn’t cope.

I agree.

He has significantly higher needs than a 12-year old without those difficulties and, while I haven't done an awful lot of DLA applications for children, middle-rate care sounds right to me.

If he needs help dealing with incontinence or other issues during the night, make sure you mention that, too. That could meet the threshold for higher rate care.

I got middle-rate care for a friend's son who had significantly lower needs than your boy, OP.

It is not so much how you fill the form in as what you include especially with numbers, how many minutes, how far etc as these might be judged in blocks so you could fall just outside another band. I would strongly suggest that you get help from someone to complete an appeal, not sure if you submit more for the mandatory reconsideration, CAB will do this or some condition specific charities can help too.

I am going to do the mandatory reconsideration. His gastroenterologist confirms the repeated soiling throughout the day and night, so it’s not just my word, it’s strange to be honest.

Oh and there’s also GP evidence spanning years discussing these issues, emails to school, all of it I sent.

That seems an odd reason for turning it down. My son is AuADHD gets middle rate care and low rate mobility, no other health issues, no EHCP, mainstream school.

They didn’t turn him down completely, they awarded low rate for both care and mobility, reasoning was he didn’t have an EHCP, he’s in mainstream and he’s described as intelligent and happy.

Sorry that’s what I meant.

Why are you paying for these things though? The NHS can support him with his gastro issues, prescriptions would be free on the NHS and if he’s got an ADHD diagnosis already why did you need an updated report?
I have absolutely no qualms about children of reasonably wealthy parents receiving DLA, but I do think you’re wasting money here that could be going towards his school fees. Do you have enough in income and / or savings to fund private school for the next 7 years without the DLA?

Because the NHS dragged their feet for years and kept prescribing him movicol, which was crap and didn’t work, then claimed it wasn’t constipation (I later found out you can’t reliably know this without an xray). When they finally referred him to gastroenterology (after insisting on blood tests first), I was told the waiting list was up to one year… at which point I went private out of utter despair for my poor son and the situation. I didn’t realise that a private prescription costs money when it’s for a child, so when I went to collect it, they suddenly told me the price and I was in a predicament at that point where I had to pay.

He now has megarectum and a stretched colon, which needs specialist gastroenterology, which I’m happy to fund if it sorts it and helps him x

Ah okay that probably comes under 'prompting' for toileting & continence rather than needing physical help.

It's still worth a mandatory reconsideration though due to the amount of time you spend helping.

Is the continence problem a disability - not expecting it to improve over the next 12 months or is he recovering from an illness/episode that's likely to improve? That's likely to make a difference.

If it's more of an illness that will improve then try to focus on the care needs as it relates to the autism.

How much evidence did you send? If you sent a lot, it’s possible that they didn’t read it all because they don’t get a lot of time to review claims. DLA doesn’t tend to consider GP evidence strongly because it isn’t specialised.

They are interested in care needs only so just be sure that any evidence is very clear about his care needs.

Hopefully it will just take MR for someone to look over it better.

Anyone with any sort of complex disability or health need will tell you how absolutely diabolical the NHS can be in terms of waiting for treatment and the actual treatment offered. That’s not me knocking the NHS, I think it can be wonderful and it’s saved my life several times but equally I’ve had times I’ve paid for treatment (on a credit card when I couldn’t afford it really) in order to simply have some quality of life. If someone can afford treatment privately for their child why wouldn’t they do this, and / or use DLA for this: many, many parents do this.