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?

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.

I am not sure how you have concluded that from the example I gave.

He didn’t just not sleep well. Because his needs can sometimes not be immediate (because he is articulate), he is vulnerable. He slept all night in a tent, outside, freezing under a towel without a sleeping bag because:

1. He assumed he didn’t have a sleeping bag (despite all the other children having a sleeping bag around him).
2. The staff didn’t supervise him / understand his needs enough to check as he needs someone to prompt and check and remind. If you don’t, situations like this happen.
3. I would expect a neurotypical 11 year old to ask for a sleeping bag or complain that they are frozen cold all night under a towel unable to sleep, not just accept the situation as normal which is what my son did.

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?

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.

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…!)

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

Thank you, you agree with me then. He can’t spend a night without me or without adults who are keenly aware of his needs or situations like this occur.

Unless you think the situation I’ve described is acceptable or normal for your average 11 year old?

FWIW the school rang me the following day as he wanted to come home (understandably), I then drove 1.5 hours to spend the day with him and the rest of Year 6 doing activities and encouraging him and trying to persuade him to stay - he still didn’t want to after a horrendous night - so I had to take drive the 1.5 hours home again. But I suppose that’s perfectly normal for a Year 6 child?

I wish posts could be filtered by 'legally correct'.

@Newyeargymwanker I'm sorry you have a tough time. You must realise, though, that within each band of DLA there is a range from 'just meets the criteria' and 'just misses the higher activity.' I don't know you at all, so I don't want to be insensitive, but as an example, someone who is completely immobile, with a tracheostomy for breathing, requiring suction every 15 minutes, a peg tube for feeding, a drug regime that takes hours, twice daily physiotherapy, etc., will still only get high rate care. They won't get a top up payment because they have higher needs than the non-verbal but otherwise healthy child in need of constant supervision because they have no sense of danger.

I guess what I'm saying is that @Blinmey asked a question about whether her child had been awarded the correct DLA rates, not whether you think it's fair that a child who is verbal and goes to a private school qualifies for DLA.

The other thing about EHCP is that if the school he’s at is the only one which can meet his needs (eg high level of support, small classes etc) and you get it named in section I of his EHCP, the LA must cover the costs.

I realise this will make some posters burst into flames!

Thanks it is certainly something worth considering for the future. I know it will be a massive battle and that the LA won’t agree, I know these cases can drag on for years and it’s very very difficult, I’m not sure I’ve got the energy at the moment.

It might not be. If you lawyer up and go via IPSEA or SOSSEN in the first instance, and keep your focus on his need for continuity of placement then it might go straight through. I’ve just done my Nephew’s and it was eye wateringly expensive placement wise but the LA didn’t have a viable alternative so he got it. <preen>

Would this create a headache for the school he’s at? They are wonderful I wouldn’t want to cause them any stress.

I don’t know enough to comment on chances of success but I think there is no harm in asking for mandatory reconsideration. It might be worth going to a CAB or university law clinic to get some basic advice. Even if rejected on MC, you can appeal and success rates are in the region of 75%.

This is exactly it. There is a limit to resource and children and adults who are truly 100% reliant on others will miss out if claims from people who don’t need it financially continue to argue for more. It also forms part of the ‘if child A gets higher rate for everything and they can go to mainstream school then, then, then’
argument. And that’s a horrible state of affairs.

Private school is a massive luxury. OP is clearly not on benefits paying for it that way. She doesn’t need this extra money. And let’s not forget she’s trying to argue for more. She’s already been awarded some.

The money simply isn’t required as the OP can afford to pay for private school. It’s not like she can’t afford continence products for him or similar.

www.ipsea.org.uk/pages/category/education-health-and-care-plans

It’s not money for me, it’s money for my son. You should know awards are in child’s name and national insurance number NOT parent / adult. Last time I checked he doesn’t have a job or earn any income.

No. Just means that the money comes from another source and they’ll also have more information to help them get a better handle on his needs.

This sounds very unusual. It is very obvious when a child has soiled themselves, even just a little, as they will smell of faeces. I have quite a lot of experience of such children. So if it does happen at school, they will be very aware.
Did school complete their part of the form? When I’ve done this as Senco, I’ve been able to include copies of the toileting records showing how frequently a child has been taken to the toilet, what support they've needed, how many soiling incidences have occurred during the school day and so on. This is very strong evidence that a child has high needs 24/7.
His school Senco needs to complete a Health Care Plan with the support of the paediatric encopresis team and he needs supporting in school to go to the toilet at set times. The daily use of laxatives will not encourage his bowels to start working naturally.

This is so so ignorant. Are you aware that LOADS of private places are funded by the LA because they recognise that some children can’t access mainstream education. It doesn’t have to be a specialist school. It DOES have to meet the child’s needs. Some parents are luckily in a position to fund. But just because they can doesn’t mean they should. Every child has a right to a suitable education.

And DLA is deliberately not means tested because thankfully the state recognises the enormous financial weight that a disability brings.

It isn’t a pie. You don’t get a smaller slice.

His gastroenterologist has said 20 minute sits in the morning after breakfast and evening meals is enough. The laxatives are difficult as when we tried to reduce it, he went even worse again.

But if he is soiling throughout the day then it clearly isn’t enough is it?

It is ‘better’. So he might only soil 2-3 times per day and night instead of so many I’ve lost count. We can have family days out now where as before he had to be close to a toilet at all times. The gastroenterologist has said this is normal and will be like this for a long time as the bowel resets, he didn’t seem concerned as it was an improvement.

When we reduced the laxative it went back to being worse again, so we’ve just had to stick to laxatives for now.

It isn't quick. You are looking at a six month wait.

Definitely worth a mandatory reconsideration as alot of decisions are changed.

Keep ALL evidence of costs eg receipts for his nappies/pull ups, cleaning wipes etc as they are very strong evidence.

They will question you on who provides the personal care at school. Is there a school nurse or something that changes him & cleans him up (sorry I don't know much about the private schools) or are you going in to do this.

Keep a record & evidence of every time the school call you in to collect him or change him.