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.

[Fairylea]

Also by 7 if your child doesn’t have an ehcp they will be asking why - if they have enough care needs to warrant mid or high rate then they will have those care needs at school too. In a younger child there won’t be so much evidence at school / an ehcp may not have even sought so they tend to give higher rates but when they are 7 and have been at school they go a lot on the evidence from school and they assume if they have those care needs someone - parent or school- will have secured an echp for them.

[Ceto]

I'm a bit puzzled you haven't answered questions about whether he has an EHCP, which suggests he hasn't. I know schools are often not helpful about this, but I suspect you would be very well advised to apply. There's information about how to do this on the IPSEA website.

Also, have you had a social services care assessment? Again, it would make sense to do this. If you have any help through them it may enable your wife to get a job.

[JigglyTuff]

My son doesn’t have an ehcp but gets mid rate care and lower rate mobility.

[Sirzy]

In an average day what extra care do they need at home?

For comparison ds is also 7 - dyspraxia is one of his diagnosises. He needs help to dress as he can’t dress independently, he needs help to take medications, we have to do therapy at home (OT, physio and chest physio) and SALT activities. He needs constant supervision.

He also has “adaptations” like his Lycra suit, stair rails etc.

Any things like that you need to detail in detail on the forms. Often things become so normal you forget they aren’t!

[Ceto]

SEN Tribunal appeals aren't really that long and drawn-out these days, TheHungryDonkey - three months from start to finish normally.

[Fairylea]

Jiggly that’s interesting. I really think that’s becoming unusual now. On the Facebook dla pages which have nearly 30k members there are lots of people recently being refused whose children do not have an ehcp.

[Holdtightdontletgo]

They do add up the time you spend in a day and night giving your child extra care. As he is getting older, maybe he is becoming a bit more independent which is what you say they actually said.

[TheHungryDonkey]

I first applied for DLA when my child was 8. Without an EHCP. They are not essential for DLA. Neither is going to a special school. The claim was initially awarded for a year because there wasn’t even a diagnosis, it was all about the extreme needs. A year later with a diagnosis and still no EHCP it was awarded until 16. It a school can meet needs and put in adjustments as well as access top up funding an EHCP isn’t essential for a DLA claim.

[Aj9612]

The school give him something like a echp but they call it something else. We thought we provided enough document etc as we provided far more than last year.

[Holdtightdontletgo]

I appealed when the care rate went down for my ds. I couldn't understand it as I felt his needs had increased. He was only in school part time and he had a one to one. This seemed to make no difference. It was about how much time I spent giving him the extra care.

I had a reassessment over the phone and was told that even though his daytime needs increased, he needed care for less than half an hour per night, so the overall rate went down.

[Holdtightdontletgo]

Btw he had sleep medication so was better at night.

Children's needs do change.

[Fairylea]

They do look at the whole claim. And an echp isn’t essential BUT it does provide solid evidence of your child’s needs which is taken into account.

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.

So it does seem quite a lottery as to whose desk it lands on...!

[listsandbudgets]

OP I'm sorry you're in this position. Whether or not your child is entitled to this money (and I don't know that's for an appeal / tribunal to decide) it must be a huge shock to have it withdrawn like this.

I just wanted to say though that I am dyspraxic and was diagnosed at the age of 8 (this was 1983 so lucky they picked it up as not really talked about much then) and it really does get easier to manage. Yes I still bump into things, still can not be trusted with a hammer let alone a power tool, find flatpack a complete mystery, can't drive or steer bumper cars and boats, have no sense of direction whatsoever (even my 5 year old DS can find the way better than me) BUT I can get through most things without help. If I don't stray too far off my normal beaten track, stick to paths, use buses and taxis and leave the DIY to someone else I can cope. I think I've developed strategies to cope and manage because I've had to. I hold down a job, look after 2 children and generally get through life - your DS will be OK though I know its hard to believe that right now.

[Hermanfromguesswho]

He doesn’t need to have an EHCP (it’s really really hard to get one and can take months/years!)
My son gets high rate DLA without one. I’ve found that for us it’s easier to get DLA as he gets older as the difference between my son and his peers of the same age become more obvious.
Ie. At 12 other children are fairly independent whereas my son has no Road sense, is too anxious to go out without me, needs me to brush his teeth and is up a lot in the night. All of that is fairly usual when you are 4 or 5 or 6 years old but not so much at 12.
You might find a similar situation if you apply again at a later point.

[LakieLady]

Challenge the decision, OP, and start gathering your evidence now, while you're waiting for the mandatory reconsideration to go through. Get a benefits adviser to help you through the process.

Remember that you need to demonstrate that he needs significantly more care than a 7-year old that doesn't have his problems. Give examples of things that a child of the same age would normally be able to do but your son has to have help with, eg dressing himself, feeding himself, getting himself a drink, using the toilet ad feeding himself without help.

The threshold for middle rate care is that he requires frequent care and attention during the day.

I can see how it can come close to £1,000 a month. MRC + lower mobility is over £80 pw, CA is £62 or thereabouts and the disabled child element for tax credits is over £60 pw. That's £200 and there will be other bits and pieces that I've forgotten about, especially if housing benefit and council tax reduction are in payment.

[JigglyTuff]

He was awarded that last year fairy. Renewal is next year I think so will see then.

He does require a lot more support than most children - he’s 11 and can’t open a water bottle!

[Discusting]

Can someone explain to me why the DLA money makes a difference to them? I am not trying to be difficult, I generally don’t know why extra supervision means money is needed?

[kuniloofdooksa]

It's not trolling to point out that your family doesn't seem to have nearly such high needs as other families with disabled children. We see a lot of posts on mumsnet where families facing much higher challenges still struggle to get the support they need.

£1000 per month is the equivalent to the post-tax&NI take home pay of someone working 35 hours per week at minimum wage. I would not expect a family to be awarded a care component at that level unless it was clear that it would be completely impossible for one parent to have any kind of employment at all. I would expect that level would be awarded if for example a child needs so much active and vigilant care during non-school hours (eg regular life-threatening fits) that the only time a parent can sleep would be during school hours. I do not think that the details given this far for this case suggest anything like this level of care needs. I think it is possible that this decision is correct.

[Hermanfromguesswho]

I use my sons DLA to pay for his weekly psychologist session for his anxiety. I also use it to buy expensive clothing that he needs as can’t cope with normal clothes due to sensory issues. Plus to pay for Taxi on days when he can’t manage the school bus.
He’s also lost a winter coat, a drinks bottle and 3 pairs of goggles in the last month due to his poor organisation skills which I’ve had to replace.
Having a child with a disability is expensive!!!

[Aj9612]

Thank you listsandbudgets. Our biggest concern are later years especially as his younger sister doesn't have it so we don't want a difference to show. Thank you.

[ProfessorCat]

It has never even occurred to me to claim Pip /DLA for my dyspraxic child.

It was hard enough getting it for myself and at the moment I'm bedridden, housebound and need constant care doing everything from washing, undressing, feeding and moving.

They are really cracking down on people who are claiming for disabilities and conditions that aren't severe.

It's completely based on the level of care needed now and mobility. If a child can attend school, walk even if aided, feed themselves, go to the toilet etc then they don't get it. As I said, it didn't even occur to me to claim for dyspraxic DD as she doesn't need it. It's for severely disabled people.

This is why it's now extremely difficult to get Pip for mental health issues.

[coffeemachine]

discusting - very apt username but let me help you:

Can someone explain to me why the DLA money makes a difference to them?

I have a child with severe ASD and severe learning diffs. With the help of medication I am hanging on to my job for which I had to half my working hours as there is no childcare available. DLA enables me to keep a roof over our head.

my child cannot attend mainstream activity - so a 30 mins 1:1 swimming lesson costs us £25 (I pay £3.75 for group lessons for my other child).

• therapy - unfortunately, we do not get (despite my daughters severety) any therapy on the NHS - so regular therapy is privately funded by us - with the help of DLA.
  

My child has some severe food allergies which means we have to buy more expensive alternatives
Days out are a routine as I always needs to have one 1:1 adult did DD with me (I would not be able to look after birth DC on my own).
I could go on and on. If it helps you, despite getting DLA we are financially shafted due to the loss of earnings. I am looking forward to poverty in old age as I cannot afford a pension and I will be looking after/caring for DD to the day I die. my life is harsh, tough and shit. there isn't much I enjoy and we are - despite DLA - pretty much piss poor . Hope you find this reassuring!

[WhyWouldYouThinkThat]

.

[Headofthehive55]

Why would getting the money stop a difference being shown?

[Headofthehive55]

Children can and do grow out of or learn to manage their condition / ability.
My DD had developmental delay, didn't talk, walk or was able to hold a pencil on starting school.
She now learning to drive and has just been offered a job. Something I thought I'd never see! Have faith. Your son will grow to manage this condition.