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

Blinmey · 2026-07-15T12:15:12+00:00

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?

Original poster

Blinmey · 01/09/2026 19:37

caringcarer · 01/09/2026 17:32

It seems odd you deliberately give him the laxatives before bed knowing he will soil the bed. Why not give them to him in the morning so he goes to the toilet with his toilet pass during the day then probably wouldn't soil the bed at night. It must be so embarrassing for him.

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I don’t, I give them to him at 8am (before school). It then takes about 6-12 hours for them to have the biggest effect, so he is at home when they really kick in. It is preferable that he is up late, in the comfort of his own home with me to assist, than me giving them in the evening and then he is having to try and deal with it by himself the next day whilst at school.

OP posts:

Busydoinnuthin · 01/09/2026 18:10

If you're not happy definitely appeal. I've not had to do it for a while but I always found loads of help online. Remember that you're describing how he is on the worst possible day.

Jemimapuddleduk · 01/09/2026 18:01

That doesn’t sound right. We’ve just been reassessed for my son who is nearly 12 and has autism and GI issues. He got middle rate personal, lower rate for getting around.
he does have an EHCP and has communication needs associated with his autism (he’s under complex needs SALT team).

caringcarer · 01/09/2026 17:32

Blinmey · 15/07/2026 15:18

He is very embarrassed so he will soil at school and not notice or not tell anyone, or if it’s too bad he will take his pants off and put them in his bag (again not telling anyone or even me until I bag check and find them) he has huge toilet avoidance (he says school and public toilets are disgusting), which exacerbates the issue as he will attempt to hold it in all day - I time his laxatives specifically so he physically cannot hold it by the evening and so he has to go.

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It seems odd you deliberately give him the laxatives before bed knowing he will soil the bed. Why not give them to him in the morning so he goes to the toilet with his toilet pass during the day then probably wouldn't soil the bed at night. It must be so embarrassing for him.

Original poster

Blinmey · 01/09/2026 17:07

Just wanted to let anyone know who was interested that my son was awarded high rate care and low rate mobility through the mandatory reconsideration. I wasn’t expecting to receive a decision so quickly, but I’m really pleased, this money will greatly help.

Thank you everyone who gave advice.

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Original poster

Blinmey · 18/07/2026 09:26

SurreySenMum26 · 17/07/2026 20:32

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

It’s so frustrating, especially the attitudes of other people.

I wish I didn’t have to send my son to private school, it would save me a lot of money. I think this is also indicative of the attitude towards private education, there’s an assumption that every family who makes that choice is loaded / a snob / wanting to give their DC an advantage of everyone else. My son’s school has 40% neurodiversity, the families send their children because mainstream isn’t suitable for their child. Our disabled young people are being let down massively in state mainstream secondary and we have a worsening mental health crisis. I have sadly worked with a lot of young people who cannot attend school, are highly anxious or have other mental health / behavioural issues, and end up - as some people on this thread are worried about - ‘costing the tax payer more’ because the correct support and funding wasn’t there in the first place. These are young people that could have been working or otherwise contributing, but they’ve been incredibly let down and neglected by the system.

OP posts:

Kirbert2 · 17/07/2026 20:45

Blinmey · 17/07/2026 20:25

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.

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Yep.

You also have to be repetitive. I was told by the hospital social worker that if you feel like you are repeating yourself, you are doing something right.

SurreySenMum26 · 17/07/2026 20:32

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

Original poster

Blinmey · 17/07/2026 20:25

LakieLady · 17/07/2026 20:17

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?

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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.

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LakieLady · 17/07/2026 20:17

Blinmey · 17/07/2026 18:13

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 🤷🏻‍♀️

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?

LakieLady · 17/07/2026 20:14

Blinmey · 15/07/2026 18:42

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.

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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!

Kirbert2 · 17/07/2026 20:12

Blinmey · 17/07/2026 20:04

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.

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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.

Original poster

Blinmey · 17/07/2026 20:04

Kirbert2 · 17/07/2026 18:16

That sounds accurate to me.

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

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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.

OP posts:

Kirbert2 · 17/07/2026 18:16

Blinmey · 17/07/2026 18:13

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.

Original poster

Blinmey · 17/07/2026 18:13

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 🤷🏻‍♀️

OP posts:

Original poster

Blinmey · 16/07/2026 13:07

ClarkeandNewman · 16/07/2026 11:11

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.

OP posts:

ClarkeandNewman · 16/07/2026 11:11

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.

ParadoxicallySurviving · 16/07/2026 10:58

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.

Original poster

Blinmey · 16/07/2026 10:39

eatreadsleeprepeat · 16/07/2026 09:45

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.

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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.

OP posts:

eatreadsleeprepeat · 16/07/2026 09:45

Blinmey · 16/07/2026 08:50

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.

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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.

Original poster

Blinmey · 16/07/2026 08:50

Soontobe60 · 16/07/2026 07:32

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

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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.

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Original poster

Blinmey · 16/07/2026 08:49

Soontobe60 · 16/07/2026 07:29

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

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

OP posts:

Soontobe60 · 16/07/2026 07:32

Blinmey · 15/07/2026 21:07

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

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

Soontobe60 · 16/07/2026 07:31

Blinmey · 15/07/2026 21:10

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

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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.

Soontobe60 · 16/07/2026 07:29

Blinmey · 15/07/2026 20:35

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.

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