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?

DLA is non means tested .

I also went to a tribunal and won so 💁

High rate DLA Care is for a child who has both day-time AND night-time needs

Middle rate is for day-time OR night-time

Nothing else is relevant.

"Needs" means help that a non-disabled child of the same would not need.

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.

So it sounds like my son should at least have got mid rate?

Daytime Needs = frequent help throughout the day

Low rate = help for 20 mins or more, or on more than one occasion

There is a lot of wrong information on this thread.

High rate care is only awarded where there is both substantial day time AND night time needs. You will not get it just for night time care. It has to be both.

Do not complete the forms based on a worst day. This is old advice and means you can be found guilty of fraud if they investigate, which they sometimes do. You must complete the forms honestly, saying what happens day to day. You can talk about better days and worse days and how a week might be made up of these days.

You can get an ehcp for an academically able child. You just have to focus on the things they do need help with and what barriers they do have to their learning. My son is 14 and attends an autism specific specialist school and is very academically able (scoring level 9s on mock GCSEs two years early) but still has an ehcp that we applied for for him when he was 6. He gets high rate dla and has done since he was 4.

Look up the cerebra dla guide, it will explain all of the criteria’s for each dla threshold.

This is such an ignorant post. I don’t even know where to start!

Go for a MR then Tribunal

Ask for an in person hearing, urn up in person and bring someone else with you who knows your son - eg his father

Thats what the Judges recommend

When I went for my youngest son we walked in ready for a bust up, Judge looked at us and said didnt understand why he wasnt getting middle rate care & lower rate mobility and the DWP rep said he didnt either

Okay so that sounds definitely wrong then. I spend over an hour per day on his bowel care needs without even considering how his autism and ADHD effects his care.

Being academically able isn’t a bar. It’s down to how much help he needs in a day over and above a child typically needs at his age. We had higher rate for my academically able dd but had to go to tribunal - he had autism and seizures, it was the latter that really got the award because it meant she needed supervision constantly, though thankfully they stopped with puberty. Years later we lost it completely (pip) despite being hospitalised twice for eds and needing supervision to stop inducing vomiting, it doesn’t always make sense but I gave up fighting for it

Definitely appeal OP. And re the EHCP I'd apply for that also as it's a lengthy process and it stays with the child until they are 25 so well worth having. We have just started the process and it's an absolute ballache but it will be worth it in the end. Have a look at AskEllie on FB for info re the DLA stuff, he does some great videos and they are short and snappy. He did one a while ago about how being a SEN mum is not normal parenting and how we are always on high alert and can lead to PTSD/burnout. It resonated with me. I know that's not what you asked but it's just an extra bit of support that is not a massive list of websites which is often what we get bombarded with and which is overwhelming in itself. Sending love 💕

In these kinds of situations (help required both night and day) one of the most powerful pieces of evidence you can submit is a 7 day day/night diary illustrating the kinds of incidents you have described and when they occur. You should also clearly indicate how much time was taken up. For example if DC needs to get up and soils how much time to help him to get to the bathroom, clean himself, and (if necessary) change bedding.? Needing attention through the night does not have to be every single night to the same extent. DWP would expect to see an average of 3/4 nights out of 7 with incidents requiring help of say upwards 15 minutes. Also if your DC sleeps badly and wakes upset or confused such that you need to watch over him that counts as "constant attention".

I asked for mandatory reconsideration after my son with a similar profile was awarded low rate for both. It took a while but I ran it all through co-pilot to check against the criteria and I worded it differently and I was reinterviewed and they awarded him middle mobility and high rate care. Just do it.

Absolutely get the EHCP. It can protect him till he’s 25 and isn’t just about education, it’s about his social care and health needs and you’d be amazed how things can change over the teen years. Apply yourself, it’s straightforward.

So it definitely sounds like you provide more care than what lower rate would cover, however age 12 is a common re-assessment point is because that’s where they start to consider them capable of being able to manage some of their own needs more independently, unless there is evidence indicating why they can’t. There are often key reassessment points (depending on the condition) at certain ages.

I can see why you’re struggling to get more because while (as a parent of two very bright but very complex ND kids with significant medical needs) I do completely understand the reality, to the decision makers it probably seems rather contradictory that he can manage his own toilet needs all day at school, can manage school without an EHCP or significant additional support, but then needs the level of additional care you’re describing.

At 12 they would typically expect them to manage their own toileting needs unless their disability means they can’t and for a child who’s in a non-specialist school who seems fairly independent and capable of looking after himself for so much of the day, they have probably concluded that he should now be able to manage his own toileting needs.

You probably need to explain more about the disparity between school and home care given, and also exactly why he needs support with his toileting issues.

Out of interest have you ever tried dietary changes such as going dairy free? So many kids, especially ND kids, have bowel problems caused by, or exacerbated by, allergies and intolerances and never come across a medical professional clued up enough to investigate that.

My daughter gets higher rate care and mobility and what you are describing with your son seems luxurious.
you can speak to your son? He can understand? He has a problem which you can help him with? He is academically able?

Its not a race to the bottom but dear god, that doesn’t seem too bad.

You are welcome to spend 24hrs in my house and see what higher rate care actually looks like.

There was a lot of evidence submitted to support, not just stuff from his gastroenterologist. I had 4 years of his school SEN education plans, emails back and forth with school confirming various care needs, reports of school trips and incidents.. an example when he went on the Year 6 school camping trip, he ended up sleeping under a towel instead of a sleeping bag because nobody gave him one and he assumed he didn’t have one and didn’t alert anyone, the staff didn’t check on him… he was freezing all night, didn’t sleep, woke up cold to the bone…these are examples of how he can come across as very academically intelligent but he’s vulnerable… I had evidence of all of this so I think something has gone wrong.

I have a child with same conditions and get low and low. However, our soiling has been largely with (there is hope for you!). We do have a shit load of allergy stuff to deal with.
I just did the renewal and expect low low again. But I would try if I was you, due to the impact of soiling.

I’m not suggesting he’s entitled to higher rate, I’m saying I do a lot more than 20 mins which is what low rate is… as you said it isn’t a race to the bottom.

He went on the year 6 trip?

I dont think that says what you think it says. It doesn’t matter that he didn’t sleep well while he was there? He went on it.

Not answering your question but it sounds like school is not meeting his medical needs. At the very least he should be on an IHP and he should have a safe place to go in school to get discreet help, and a trusted adult. The fact that you have so much to do in the evenings as a result of him not having support in school is evidence that his needs are not being met. Plus 7 hours of getting zero care every school day is not helping your argument for DLA.

At my children's huge state school there are secret toilets whose location is only revealed to the few children who need them for medical reasons, and there is a school nurse always available. I'm sure you found the best school you could at the time but that does not mean they are doing all they can, or should, be doing to meet his needs. It is tricky with private schools because they can just stop taking your money but poor lad. School is not ever going to feel "psychologically safe" to him under the current regime of him carrying, or just wearing, soiled pairs of pants all day.

You definitely should!

Tbh I think you are lucky you got lower rate.