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.

[MomToWedThorFriday]

Losing £1000 a month IS terrifying, we just have too.
DLA pays for my son to attend childcare - childcare that other children his age do not require. He receives middle rate with no EHCP, he will never get an EHCP because he achieves academically. That is categoric but doesn’t take away from his extreme social issues.
His achievement and behaviour at school do not negate his horrendous behaviour at home. Children at school are, of course, supervised constantly anyway. I’m guessing most people at home are able to shower/wee/cook without having their 10-11 year old:
Punch a sibling for fun
Wreck the place (smash doors down)
Steal
Run away.
I can’t. If I leave the room he acts out immediately and his siblings get hurt. It’s exhausting I am so, so tired.

I dare every one of you naysayers who think parents of children who receive DLA don’t ‘deserve’ the princely sum of £62 a week to come and have a go at it.

[MomToWedThorFriday]

And before somebody tells me it’s because I’m a shit parent - it isn’t. It’s because he spends all day at school bottling up anxiety and conforming to social norms he finds intensely difficult then explodes at home. It’s quite common in ASD.

[lemonsandlimes123]

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.

[User843022]

Mom that's does sound very tough . Sadly, as demonstrated here disablist and generalised judgements are rife.

[Tomorrowillbeachicken]

I've been told its harder to get an EHCP if child is academically harder or advanced too

[Starlight2345]

My Ds gets mrc and lrm . No ehcp. I don’t know if your dc meets the criteria for mrc or not but yes I would also put in a plan of how you are going to manage if tribunal doesn’t go your way . I haven’t read anything that would mean your child wouldn’t manage childcare . Maybe relief work . , part time . I work 3 days a week and get my Ds’ s appointments in days off . Sometimes it means having to rearrange appointments but I tell them I am a Lp and I have to put food on the table . Could she work evenings or weekends when you are not at work

[brasty]

Sadly there is no recognition that going to frequent hospital and Drs appointments can make it hard to hold down a job. This is the case for adults as well. Lots of employers are not willing to keep you in employment if you have to go to a weekly appointment during working hours.

[notapizzaeater]

Did you use the cerebra guide ? It’s really good to remind you of the things you just do automatically- as parents we forget that other people don’t still wash their 15 yes old hair, you have to hold their hands across the road etc.

I’ve just this second told my 15 yr old to get dressed as we are going out - he’s just come in in his knickers ready ...

[quirkychick]

We had a similar issue a couple of years ago. My dd2 has ds was 5yrs old and we needed to renew, she had previously had higher rate for both care and mobility and was reduced to low on both counts. We were lucky in that the Down's Syndrome Association helped us loads, but the Cerebra website is also really good. We had a mandatory reconsideration and had the care upped (how it was reduced when we had sleep logs and a reference from the sleep clinic too?) but ended up going to a tribunal for the mobility allowance which we won. The judge at the tribunal took a very dim view of the DWP not including our previous claim, to see why they had reduced the mobility rate. I think they hadn't really read our application and didn't really understand the points of law.

Some extras that we pay for with a child with a disability, travel/parking to and from appointments, extra pullups/nappies not included in our prescription, specialist swimming costume for incontinence, repairing damage to the house: replastering, light switches, extra electricity for video monitors/white noise for sleep, bed guard, independent Speech Therapy to top up poor local authority provision, expensive babysitting/childcare as not just anyone can look after dd2... I could go on.

[MomToWedThorFriday]

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.

[Boulshired]

You do not need an ECHP but if you haven’t got one then you do need the school and others involved to support your claim and provide evidence. It is why parents with children who manage coping strategies (often at a real detriment to themselves) at school but the pressure release at home is awful have difficulties claiming.

[Worriedobsessive]

Momtowedthorfriday im sorry but that’s simply not true. The law is the law. Whoever is advising you re EHCP is wrong.

[woosey35]

We get higher rate care dla and middle rate mobility for my daughter. Yes still no ehcp. It’s been turned down 4 times due to the fact that she is a bright intelligent and academically able little girl. She is 9.
However her needs are immense. She takes 12 tablets a day, has nebulisers and injections daily and is at risk of going into shock. The school pay for a full time TA 1:1 for her or she wouldn’t be able to go to school. She needs 1:1 supervision all the time. Still no echp. I think the whole system is rubbish. And very individual.

[woosey35]

I must add...I had to give up my full time job in order to care for my daughter. She rarely makes a full day at school due to her condition. It’s tiring and immensely stressful. For anyone to say a child’s DLA is unwarranted hasn’t walked a step in the shoes of a parent that is a full time carer.

[Worriedobsessive]

Woosey35 what did your tribunal say about your daughter’s lack of EHCP? Was she turned down for assessment or after?

[woosey35]

The school put in a humongous file of evidence. We had disability team on our side too. They assessed and agreed she needed constant support to keep her safe. An ed psych assessed and said she is highly intelligent. A community paediatrician wrote a report saying she needed support to keep her safe (alive!). But still, 4 times turned down!! She’s even had to be tutored at home several times of which the school pay. She’s been to hospital school many times too. All this and still no. We are currently appealing and have a meeting next week as to the plan.

[Worriedobsessive]

Gosh that sounds like madness! How stressful. Are you in touch with Ipsea?

[Witchend]

It does seem to be luck of the drawer.
Dd2 was born missing her hand. She got middle level when we first applied aged 3yo. Which we were astounded by as she didn't seem that bad. Next time she got lower level and now she gets none.
This seems to be fairly typical, but then others who are exactly the same have been refused from the start despite putting similar things.

I'm assuming for you his dyspraxia must be bad as none of the people I know who have tried have got anything unless there's other things as well.
One thing I found helpful was asking a close friend if she could pick out little things she had noticed me helping with that she wouldn't expect to help with her child. Surprised me the number of really little things that could be picked out because for me that had become normal.

[Witchend]

Draw, not drawer!

[woosey35]

Ipsea??

[Worriedobsessive]

Yes Ipsea. The charity which supports people through the EHCP process.

www.ipsea.org.uk/home

[lemonsandlimes123]

momtowed - please say if you are not in England because if you are in England the info you have is completely wrong. Your local authority may have certain policies that it tries to use to stop you applying but they would be illegal and would not stand up to a tribunal.

[Worriedobsessive]

Have you not come across them before?

[Worriedobsessive]

Woosey35 I mean this in the kindest way, but if you haven’t heard of Ipsea, you’re absolutely getting duff advice.

[lemonsandlimes123]

yy worried!