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.

that is simply not true for everybody!

She still has issues. Medication, hospital appointments, but she is able to weave them into life. Brain damage doesn't go away no, but she can manage so much better than she could as a small child.

Why would getting the money stop a difference being shown? I'm not sure of the context you are asking this question but I'm guessing it is related to discusting's question.

For DS2 it enables him to attend an educational setting i.e. funds his transport needs (allocated via SEND transport) as he is unable to travel independently and we both work so a full contribution is required. It helps us to access care before and after school which is a cost you do not expect to fund when he is 18. It helps to purchase aids to try to help him become more independent.

I do understand discusting's question as it is difficult unless you are faced with these circumstances day in and day out to understand the nitty gritty of life

I understand the sadness that you worry your son won't have the chances your other child will - I get that but I don't think money solves that.

DLA is not meant to 'solve' the disability but to help with the considerate extra cost of raising a child with complex needs.

balls
Yes that's the sort of thing I was asking the op. For example any care I had for my DD needed to be qualified nurse territory at first she could not go to a normal nursery etc.
I think it's that sort of thing you need to show.

Money doesn’t solve things but it helps

Discusting my child gets higher rate both ( the higher rate mobility only recently). He can never be left alone whilst awake. At night he sleeps in a specialist safe space which cost us thousands of pounds. We have to pay for adaptions in the house to keep him safe. He has specialist equipment in the car ( needs to be a big one) to keep him and us and other road users safe. He has buggys and harnesses to keep him safe when we are out.
He cannot go to local activities so we have to travel to further away and more expensive ones.
He requires two carers for many things so dh has to work less hours. He frequently damages his clothes, furniture and toys. We have had to spend thousands on specialist reports and solicitors fees to secure his place at an appropriate school.
I cannot work because there is no childcare for children like him.

milk
Yes, but sometimes there isnt really a cost. My DD takes regular medication - it is no cost to me. (Order online with mine, pick up with mine)
IT takes her longer to learn. It's not about having a tutor - she just takes longer. Again, no real cost in monetary terms. I think you have to show a cost element.

Growing out of a disability? It’s not like a goth phase. For many, disabilities are life long and mean the person with it may have less chances to access things and achieve in life in ways that people without them will not be disadvantaged by. Even if they are able to manage them. Managing a disability can also be an exhausting struggle for those who have them. One person’s disability is one person’s disability.

discusting
Extra money is needed to pay for all the damage dd causes in meltdown, the clothes she refuses to wear after washed due to sensory issues, the fact I can only work part time as she has a minimum of 3 appointments a week.
Also it's pays for a Sen holiday club.
Sensory toys
Pull ups and wet wipes
New packs of underwear every month.
Extra washing.
It no where near covers what it's meant to

We had a very similar situation, as have a lot of people we know.

Most notable ones being, when I was at my absolute Illest I couldn't physically leave the house, even with my partner I went out of the house monthly, to get a pint of milk from the front door where the milkman left it was too much. Honestly I was so ill, I had multiple panic attacks each day. My DP was only able to work from 9:30-2:30 as he had to do the school run. He was having to dispense my medication as and when it was due, he had to hide all knives in our house, he removed anything I could poison myself with, the want to kill myself was that intense. We had really dark days. DWP said I didn't meet the requirements, despite having been diagnosed as Bipolar and dropping off the radar of services was something I regularly did because I wasn't able to attend on my own and my partner was working. I was completely let down at my lowest.

My father, bipolar, with an illness derived from the effects of having multiple DVTs- it's a pain syndrome I think, which is so severe that he is taking several opioid based medications each day. He also has feet problems from being in the army and a blood clotting condition that caused the DVTs in the first place. He was virtually unable to walk without a stick. We're not talking about an older man. We're talking about 50, but had these issues since 35ish. Around this time he was begging drs to chop his legs off because the pain was so severe. He had to fight for over two years to get any help from DWP.

I also know people who act the prat and get full whack of everything. For example my step sister, pretends to have mental health issues, she pretends to have psychosis, generally acts a twat, hasn't ever been given a diagnosis. As long as she's been an adult she's been given full whack of everything.

The whole system is a joke, it seems very much like the genuine claimants who are suffering really get shafted.

Head you don't have to show a cost element. It is purely care needs. Although extra care needs will come with extra costs. It's whether or not the op's child's extra care needs are significant enough to meet the dla criteria.

There is no correlation between dla and having an EHCP
My dc has hrc and hrm and no ehcp

.

Oh here we go with the fake benefit claimants crap

OP there is a very helpful guide to claiming DLA on the Cerebra website. Worth having a look.

Just to reiterate what a pp said - DLA is not simply awarded for the very severest disabilities. It’s about needing more care and support than a non-disabled child of the same age.

Some dyspraxia can be very severe. This isn’t and shouldn’t be a game of disability top trumps. That’s exactly what the Tories want.

You need to think about what your child requires in terms of extra care needs and help that a typically developing child of the same age wouldn’t require. I don’t think attending one or two medical appointments per month would be enough in itself to demonstrate this. What do you have to do for your DC that his peer group can manage themselves?

OP get help from CAB. I think you need a welfare rights adviser to help you through an appeal.

Head there is no requirement to show any cost element. My DS is autistic and we get HRC/HRM. But we don't have a lot of the expenses other posters mention, for example as his needs are severe so he reaches the threshold to receive therapy through his special school/NHS, and he can cope with public transport as he is obsessed with buses. We don't pay for holiday clubs or childcare as he can only cope with the special needs schemes, which are paid for via Short Breaks. But I've had to give up my job to care for him so his DLA is part of the household expenses, which I would otherwise be able to pay for if I still had a good career. Money doesn't solve his problems but it makes life easier and we shouldn't be punished by poverty because I can't work through no fault of my own.

I'm quite pleased that discusting asked how there is a cost element associated with a child's disability.

For those of us with disabled children it is completely obvious, because we live with the cost implications every single day, but for others, even those who are parents themselves, there is little reason to for them to have an understanding of the way in which a disability impacts on every aspect of family life.

My son has a significant, but not highly complex disability. He needs some additional support day and night and has lots of appointments. His DLA just about covers the additional petrol cost to drive him to the specialist speech and language unit he attends. We chose not to use the Local Authority taxi service as the journey would have been over an hour each way (at just four), alone with a taxi driver (who he might not know on any particular day). That for us was a safeguarding concern and we chose to use the money to dive him ourselves.

While the DLA covers that, it then cannot cover the reduction I have to take in hours to be able to transport him (I can only work 5 hours a day), the cost of my daughter's before and after school care as I can only be in one place at a time, travel costs to several medical professionals, specialist equipment such as shoes, a special toothbrush, flavourless toothpaste, a babysitter with some SEN experience, weighted blanket and mat, replacing items that get broken when he has a bad day, one to one swimming lessons, resources to help with OT and physio activities, travel costs to SEN sports club 15 miles away, unpaid leave in the school holidays as he can't attend mainstream holiday clubs.

That's just off the top of my head, I'm sure there's loads more I haven't thought about. Today my parents (in their seventies) have kindly driven an hour and a half to look after him to I can get some work done.

And that's a child with less severe special needs. Children with more complex disabilities need care day and night. There is not one aspect of life, or how money is spent (holidays, groceries, childcare, housing, clothes) that is not impacted by their disability.

Losing £1000 a month must be terrifying.

Lots of depressing generalisations.

'It has never even occurred to me to claim Pip /DLA for my dyspraxic child.'
That's like someone saying 'it never occurred to me to claim for depression or for my autistic DC'. Conditions come on a spectrum and how they affect that claimant is what is assessed. The fact that the ops dc was awarded DLA previously indicated he fulfilled the criteria previously so there's every chance his condition is such he still requires it.

'I am not trying to be difficult, I generally don’t know why extra supervision means money is needed?'

Its really stressful op but all you can do is is put in a MR then take it to tribunal. Good luck.

'Children can and do grow out of or learn to manage their condition / ability. '
Who knew? I bet you think adults also learn to adapt. Are you an ATOS assessor?

I've just read a friends pip report the tit of an assessor put 'the claimant is an ex nurse so has a wealth of medical knowledge and can apply that and cope well', someone who has had major brain surgery leaving her with many problems, as if knowledge makes the problems go away.

Thank you coffeemachine. I don’t have experience of caring for a child with additional needs so was interested in the sort of care they need.

The care needs, and extra costs, will vary from child to child. No two children are the same.

I think often just like the extra needs you get so used to the extra costs that you don’t even notice them.

OP get help from CAB. I think you need a welfare rights adviser to help you through an appeal

CAB in my area are inundated with people wanting help and they will only see you when you have navigated all stages of Mandatory Reconsideration yourself and have told DWP you wish to go to Tribunal.

In the meantime OP, use the Cerebra Guide and see if School will evidence all the extra help they give him as opposed to his peers in class. Then continue through the system, it is harsh.
My dd had indefinite DLA, we are now transferring to PIP and suddenly their face to face assessor "doesn't see" dd's disabilities and DWP are trying to uphold that against reports from Consultants. Tribunal imminent. Even with medical evidence, the DWP argue against it.
Tip, always send your submissions by PO Next Day Signed for, it's £7 or so but you need to take a screenshot of the time and signature of the person who received it.
One of their "month from the date of this letter" deadlines arrived 2 weeks after that letter's date and then there was a Bank Holiday so I only actually had a few days to submit within their "month" They then argued my submission was late so the claim would be cancelled, until I produced a screenshot of the time and date they had received it.