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?

He’s had it for years, the gastroenterologist has said it is a chronic condition (he’s been seen in last few months).

I sent a lot, it is possible they skimmed or didn’t have time. I have loads of evidence collected over the years.

That will be it. They also want current evidence, they won’t be interested in evidence from years ago.

How does that work with things like Autism and ADHD diagnosis? As the Autism one is 5 years old x

You’re all assuming that the assessors are making logical decisions. I also made a formal complaint about ours because despite the first interview going well, the centre manager decided without meeting him that he wanted to study computer science and was doing the Duke of Edinburgh award. Neither is true. I have no idea who that child is but it’s not mine. But on the basis of this hallucination and despite getting high level everything since he was diagnosed, they dropped him to lowest for everything. It’s like EHCP appeal - they see if you have the minerals to push back.

They aren't that interested in diagnosis itself, but looking for evidence of how it impacts on his mobility and care needs now, which may be very different to 5 years ago. Recent paediatrician/OT/school reports could be helpful. Many children I work with in paediatrics never get a diagnosis beyond
a very vague 'developmental delay' 'genetic abnormality' etc which tells you almost nothing, but they get DLA based on the reports from professionals which describe needs

It isn't necessary, especially if you have something more recent confirming that he has Autism. They aren't really interested in the diagnosis, they are interested in care needs and evidence supporting his care needs. A diagnosis isn't required for DLA.

So go back to his GP and ask them to prescribe the meds on an NHS prescription then.

A diagnosis by itself is not a reason to receive DLA or PIP. There are many people with ASD / ADHD who have managed to reach adulthood and hold down decent careers without the need for DLA / PIP. On the other hand, there are many people who DO receive DLA/PIP without any diagnosis.

You need current evidence of his needs currently - not historically.

I have done that. It was the first prescription that cost over £100.

I have lots of current evidence of care needs, my question was about his original ASD diagnosis (which was 2021) and his ADHD (2024), I had sent both of these reports in with the evidence as they describe his presentation and diagnosis.

It is good to have the proof of a diagnosis but the award is based on the impact of these conditions on day to day life. Not the worst day, not the mildest day but the majority of days, so four days a week say. If you kept a diary for two or three weeks you would be able to answer the questions and back up your answers.

I’m going to make a weekly diary, I submitted a ‘day in the life’ and then said this is representative of everyday, but I will do a week for the reconsideration.

Good luck @Blinmey

The posters saying you’re spending the DLA money ‘incorrectly’ are lacking critical thinking skills. It’s a bit like blokes who want their measly child maintenance payments spent on specific things.

Just because that particular amount of cash goes straight towards your DS’s school fees only means that the other associated costs come out of the family pot. You’re still paying for everything.

I’d definitely push ahead with an EHC plan. It will help if DS goes to college and also support university DSA applications.

Not read the full thread but there's a lot of misinformation from what I have seen. Mumsnet is not the place to get clear, unbiased facts on DLA.

Do the MR but don't do it yourself. Get an organisation to help you, Fightback or Disability Advice Project (DAP is only if you're in Wales), Citizens Advice at a pinch. You don't have a high chance of success at MR stage so go to tribunal if you're turned down. Again don't even consider doing it yourself. You have a good chance of winning at tribunal and if so you get the payment backdated.

In my opinion, your son meets the criteria for high rate care and low rate mobility. If you fight now, you will massively improve his life chances; for example disability related benefits are extremely useful for young autistic people who want to attend university.

Good luck and don't give up.

Thank you, there has been some great advice on this thread, overall I am happy I posted it as I’ve got lots of useful avenues to explore now.

I spoke to a specialist benefits advisor for disability benefits today and they confirmed that my son should, at a minimum be receiving mid-rate care. They also said he meets the legal test for high-rate as he has night needs - supporting evidence being his gastroenterologist confirming his bowel condition leads to him soiling throughout the day and night which he can’t manage alone, also evidenced by the time he has had to have off school (up to 12 days at a time) for disimpaction, again proving this is an issue that requires adult intervention and care. I realise this will make some people on this thread angry but it appears to be the case as per the benefits advisor 🤷🏻‍♀️

That sounds accurate to me.

My son has some bowel issues too and it is a reason why he receives HRC.

This is the second time I’ve done DLA and my experience both times has been that if there is anything positive in your evidence or writing they will penalise you for it.

Yep.

My son was in hospital when I did his claim and I got a lot of support from the hospital social workers who help fill in DLA claims all of the time and some of the things they said were eye opening about wording things in a certain way, how parents trying to be positive can actually go against the child etc.

Good for you, OP. Make sure you make that clear.

And don't be afraid to appeal it if your MR doesn't succeed. The appeal process is fairly straightforward, and tribunals relatively informal. Most importantly, the success rate is high!

Anybody who gets angry about someone getting a bit of financial help with the costs of a disability is an utter arsehole.

Is the advisor going to help with the mandatory reconsideration?

Yes, thankfully, this was just an initial meeting and we will go through the form. She did also say you have to word things very specifically, for example saying ‘X cannot toilet independently and requires assistance’ isn’t good enough. You have to word it saying what the toiletting issues are, every specific thing you help with, how long it takes, what would happen without support and compare to a child of the same age. I definitely wasn’t that comprehensive.

My son has been highest rate for care and mobility forever and I'm 4 months wait into a mandatory reconsideration. He meets all of the arrested development criteria, needs restraint even at school, under children with learning disabilities socail care and has a genetic duplication.

I do seriously wonder more often if he should just be in supported living rather than dealing with all this shit once he is a adult. There is such a push to cut benefits that I seriously worry what the future holds. He won't be able to be independent and if his support keeps on being degraded the chance of supported living might also vanish if I wait too long