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

Read what she wrote. He needed someone to supervise him getting into bed!

So what if he DID go on a school trip! Good for him. And the example you’ve given is exactly why an EHCP would be useful - to check in on assumptions like this.

(My boy set all the alarms off because he’s absolutely literal and the place where we were had a box that said “break glass” and the alarm button underneath. You may be ahead of me now…!)

People on an average income can afford private school if they make adjustments to their lifestyle, it’s not necessarily an indicator of extreme wealth. It sounds like the higher intake of SEN and small classes made it the best fit for OP’s child. The burden of private school fees is a very good reason to need the appropriate DLA.

ah, well, I would expect a child who needs nighttime care because of toileting issues not to be able to participate in any activities without a 1-2-1.

so the fact he can spend a night without you probably means he doesnt need the support you are claiming to provide?

Hi OP my son is similar needs to yours and similar age, he has other diagnoses as well, but I get high rate for care and I think it is due to his soiling and bedwetting through the night, plus mid/low rate mobility. I’ve just applied for his renewal so who knows what they’ll say. The first time I applied we had to seek MR and that was the rate it came back with. At that point he didn’t have an EHCP but does now. With your MR I’d copy and paste your daily diary to reflect a full week. I’d also apply for an EHCP right away, you can do a parental request, then that’s something else you can tick on the MR request.

Also ignore the pp saying you don’t need DLA, benefits etc. If you don’t need to spend it now, great then save it for him, who knows down the line what therapies your dc may need and the nhs probably won’t pay for it. Plus you being on call 24/7 is cheaper on DLA then the state having to prove round the clock care staff toileting for him! Why shouldn’t you have it? You are doing the work regardless of what other money you have. Your dc is the one who may be struggling and that money can help in in many ways. Mine barely keeps us in pull ups and wipes, it’s not like it’s a huge fortune bestowed on you for zero effort.

Tbh I think you are lucky you got lower rate.

You definitely should!

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.

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.

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.

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.

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.

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.

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.

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".

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 💕

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

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

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