DWP removed child disability

[Aj9612]

Hi,

Wondering if anyone else has has had an experience like ours and if anyone has advice. Our youngest has dyspraxia and got the middle care component last year and I believe lower mobility. We submitted the claim again in good time and added a lot more information as we knew more about his condition and more experience with the form now. Due to a delay on their side we had to wait an extra 8 weeks so the decision was the day before the next set of payments. This year they rejected the whole claim. I asked what had changed from this year to last. They said they don't look at last years decision so there's no consistency. They also said "we expect children to be able to manage their condition as they get older" he's 7.

We basically lose anywhere between 600-1000 a month as my wife is no longer eligible for carers and all his other payments. He can have sometimes 4 or 5 different appointments for his health a month as well as other needs.

I spoke to Step change in the interim as we have to work out what to do now and even emailed our mp.

It's hard as it's frightening and it shouldn't be about the money, but their cold and vile attitude to this and no consistency to assessment makes me wonder how many other people have been hit like we have.

[EhWhatPardon]

We get DLA for our 15yr old son with severe adhd. Day to day issues Are, he can't be left alone in the house as he can't be trusted not to do something stupid. We have to drive him everywhere as he will just get on any bus. He will cross the road in front of cars "because they have brakes", he can't cook himself a meal in case he decides to go off and leave the cooker on. He is up all night wandering around so one of us has to keep getting up to see what he is doing etc etc

He acts like a 2yr old and has to be supervised as such.

He can't be medicated due to a heart condition so this is what we have to do to keep him safe.

This is what we explained in the claim form.

[woosey35]

Crikey. No I seriously haven’t!! I’ve been signposted to alternative parent support networks which help through the process but not been signposted to ipsea

[lemonsandlimes123]

woosey - you need to get yourselves over to the SN boards where there are tons of knowledgeable posters who can help you

[Worriedobsessive]

Who on earth has been signposting/supporting you?

[Nonibaloni]

I’m doing my sons form right now. We were refused when he was under 3 but have been advised (by a charity) to apply again cause he’s 7 so the difference is more obvious. I don’t know if it’s worth the effort and stress to carry it on.

[Ceto]

momtowed - i don't know who told you that you can't get an EHCP if a child is achieving academically, that is simply not true.

Unfortunately where we live it is. There is no provision here for DCs who aren’t disruptive at school and are academically successful. The joys of a postcode lottery.

The law is exactly the same all over the country; no individual LA is entitled to apply its own policy to opt out. I suspect they won't give EHCPs in this situation willingly, but they can be forced to do so by the tribunal.

[Ceto]

Woosey, if the school is putting in place full time support it sounds as if you have a cast-iron case for an EHCP. If you can't get through to IPSEA, try SOS SEN. What is your meeting next week about? Have you actually lodged the appeal?

[woosey35]

Noni-it’s definitely worth the effort to carry on. It’s quite repetitive and the questions cross reference a lot, however I’d definitely fill it in. Good luck.
Thank you, I will get myself over to the SN boards. It can be very isolating and scary. I’m fairly new to MN so navigating slowly!! Thanks for your advice, I will get onto ipsea ahead of my meeting next week.

[MyDcAreMarvel]

The dwp own training tells DM's only to contact schools as a last resort and to be aware that ECHP are not evidence of home care needs.
It is not true that they look for an ECHP. Just wanted other reading this to be aware.
Having said that op it seems unlikely that your ds would meet the criteria for middle rate.
Possibly low rate but would need to know more details.

[MyDcAreMarvel]

"There is another myth about getting high rate care only being for children who need night time care (there is a specific criteria trotted out for that too) but I have several friends whose children have severe autism whose children sleep through the night and the dwp has written them personalised letters (as opposed to the usual standard ones) saying that although their children do sleep through they have such severe needs that they are entitled to higher rate. "

It's not a myth , your friends dc will be receiving high rate because if they did wake their needs would be nice extremely severe.

[milkchocolatx5]

EHCP is not needed to get DLA.

But if you have a child attending a special school or a child who has full time 1:1 support, then this is pretty good evidence that this child will require care over and above that of a typical peer.

[rightknockered]

All three of my children with ASD wake in the night, but only two qualify for higher rate care, the 15 year old can just entertain himself if up in the night, and knows to wake me if he is anxious so get MRC only. The other two aren't as capable as him. So it is not true that children with ASD are automatically awarded HRC.

[woosey35]

No I haven’t lodged the appeal yet. This is to start the process. I took advice from one of the sen parenting charities to go ahead. Yes the school put in place full time TA 1:1 for her. If for any reason the TA is off sick etc, the school put another one in place. They have been fabulous. However, county say that ‘her needs are being met’. Which they are. But not morally so

[Worriedobsessive]

You said you’d been turned down 4 times. What was that for?

[Worriedobsessive]

And which SEN parenting charity?

[Worriedobsessive]

Although I think I can guess...

[MyDcAreMarvel]

There have always been " assessments " they are not a new thing.

[quirkychick]

I was advised that if your dc awake 4 nights out of 7, so more often than not, and need help to resettle during normal sleeping hours (when the whole household is asleep, so not needing help at say 8pm) then it counts as night care. Weirdly, we were given higher rate care first time around with no supporting evidence and then initially refused second time around despite sleep logs showing severe lack of sleep and support from sleep clinic. I don't think they even looked at the evidence, but quickly changed it after we asked for a mandatory reconsideration. Dd2 was awake most nights for hours, up and about and not safe.

[rightknockered]

Almost guaranteed, that people harping on about benefit fraud, will then claim to be on the side of those who 'need it the most'. Ah that's alright then. Let's all live in a DM bubble and claim the system is as it should be, because it fights fraud. Fuck off with that crap.

[woosey35]

Sendiass and parent partnership

[Ouryve]

Alec, for comparison, my 13yo has been on middle rate care since he was 4. At 7, I could not leave him unsupervised at all, he had prolonged screaming, destructive meltdowns, needed us to was and dress him, could not tell us what he needed, had 1:1 when we could get him into school and was incontinent.

He's now at a specialist school, selectively mute, still can't cross the road by himself, safely, a Nd cannot be left alone with his younger brother. He still needs help with washing and bathing and still puts his clothes on back to front or inside out if I don't help him to dress.

The level of extra care needed for middle rate care is pretty full on.

[Worriedobsessive]

I knew you’d say sendias.

Honestly, ditch them right now and trawl the Ipsea site.

[woosey35]

I’m on it. Thanks so so much

[Ouryve]

Sendiass/parent partnership aren't as impartial as they'd have you believe. Ours do seem to be aware of certain situations where the la might be acting unlawfully but also seem to be of the mind that mainstream should be the goal for all children.