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.

I never use SENDIASS. They seem to work too closely with the LA in my area

My DC has severe asd/tourettes and a few othewr things. I was YEARS trying to get DWP to take us seriously. DCs conditions are getting worse the older she gets.

sometimes medical things get worse as they get nolder. you should try your GP and get some assessments, its a PITA but DWP only take ''official'' things seriously, never the word of the parents (Im sure ue to some fuckers scamming and abusing the system)

the only reason DC NOW has highest PIP and a BB is because I got someone from a disability support group to help fill in the forms, plus letters from GP.

its a bloody fuckfest the hoops and loops we have to go through to get the slightest help, finacially or otherwise, but its the only way Im afraid.

HTH good luck. as for

And I can see where this is going with a few or the posters here. Let's hope they're never put in this position.

yep, thats MN for you. i wish every sing;le able bodied 'together' people would become disabled for just ONE day andsee what its like.

i

parent partnership and sendias are also IME quite incompetent more than anything!

Who on earth has been signposting/supporting you?

😂😂😂😂😂😂😂

Despite extreme behavioural issues, including very violent episodes, we are not remotely supported. Ever. CAMHS refuses all referrals (we’ve tried many times), social services don’t give a fuck and just ignore us because he isn’t physically harming his siblings. GP can’t/won’t do anything.

Ergo, he’s gone to live with ExP.

Some places, despite the law, there is fuck all help. I’m not sure why people refuse to believe this?!

So which local authority do you live under? which SN charities such as IPSEA have you contacted?

I think people are wondering who you have got your erroneous ideas from?

Even if the child is disruptive at school, the parent will somehow be blamed. SS will trawl through the parent's life and look at medical records. My DS1 was building up an arsenal in his locker at school made up of compasses, dinner knives, sharp pencils etc. incase of attacks from other pupils, threatened suicide countless times with one attempt is now finally under CAHms and after 4 years of this I will get 4 hours of respite, promised but still not delivered. He is in mainstream
My youngest goes to a SEN school, has 1:1 even in a specialist structured environment, and yet I receive no respite for him. Apparently because he is under 8.
Local authorities all make up their own rules as they go along.

"Don't forget that when assessment was brought in over 800,000 claims were withdrawn before any assessments were made at all."

Withdrawing a claim is not necessarily a sign that the claim was unfounded.

My dd had (still has) a fluctuating condition which meant her needs were totally unpredictable. There would be long periods when she was unable to walk or even sit upright because of pain (so unable to attend school), and then periods when she was able to walk without trouble, even dance. It could shift within seconds. She could step off a bus and collapse before she had reached the pavement, or set out to cross the road and be unable to walk before she had reached the other side. She also suffered from chronic anxiety (still does) and depression and was, for several years, a suicide risk. She needed regular physio, but also kept having freak accidents that landed her in A & E.

This situation obviously meant I was unable to hold down a fulltime job: I had to be there to take her to regular physio, to look after her in bed and carry her to the loo when things were really bad, to keep her safe on the stairs, to do everything for her during the flare-ups. We also had to pay for the chiropractor, the wheelchair, the taxi rides when she collapsed suddenly out of the house. We had a claim all ready and written and supported by her consultant.

I withdrew the claim because I was frightened of the psychological effect it might have on her.

When she was incapacitated she needed a wheelchair but we had been strongly warned that when she must be as physically active as possible whenever she was able, to keep her muscles from atrophying. We were also told that when she was unable to access school we should still take her out whenever she was able to cope, to help her deal with the anxiety/depression. We were told that she should be encouraged to take part in any activities that she could, for whatever short moment she could.

I changed my mind about the allowance on one of her rare good days when I had taken her into town (as recommended by consultant) and realised that if we were claiming disability allowance then I'd be looking over my shoulder worrying that anyone should see her looking "not disabled". And worse- she would be looking over her shoulder worrying about looking "not disabled". On one of the few precious good days she needed so badly for her body to cope with the many bad days. I went home and binned that application.

We managed to keep afloat financially, basically by using money that would otherwise have provided me with a pension pot. I don't regret it. But I will not be used as an example that people changing their minds about claims means they didn't have a case in the first place.

Oh and 15 year old ds is a high achiever academically, but I managed to get him an EHCP by going to tribunal. It's the only way.

Momtothor, the law applies across the entire country. It’s one thing to say that the local system isn’t working. But it’s quite another to make some statements which are simply not true. I’m sorry you’re having a tough time of it. There is a way through.

corythatwas
You don't need to tell your dd you are claiming dla, why would you?

DS, (learning difficulties) got DLA without an EHCP or the school being contacted AFAIK. His paediatric consultant's notes were enough.

The DLA was much easier to get than an EHCP! It took 3 years and 2 refusals to finally get one, days before the tribunal was due.

SENDIASS were useless and way too 'neutral' for my liking. IPSEA is practically impossible to get through to these days but SOS SEN were tremendous.

I will be interested to see if he gets Pip next year when he turns 16.

I haven’t made a single untrue statement. My son wont get an EHCP, because of his progress. That’s not untrue - it might be (is) wrong - but it’s not untrue. School won’t support an application, they don’t have resources, and the LEA refused to assess because school told them it wasn’t necessary. Don’t tell me I haven’t tried - I have - the charities couldn’t give a stuff either. They were less than useless.

So you have applied yourself and then taken the county to tribunal who have found in the counties favour? Is that correct?

You don’t need the School onside to do an application yourself. I’m not trying to be difficult, I just think it’d be a shame to miss out because School and the LA are putting you on a bum steer.

County refused to even deal with us. I’m not sure why you’re being so fucking patronising, your experience doesn’t apply to everyone!
There is no help for us. We cannot get any, there is none there. There’s no point telling me to try this or that - we have. There is nothing. It is an absolute fucking disgrace.

I honestly don’t mean to sound patronising. What do you mean, they won’t deal with you? You have to follow their process but they are legally bound to fulfill their duty.

When you say “there is no help” what exactly do you mean? If your child was properly assessed then support comes out of that process. And you don’t need the School to support you in that, you can apply yourself.

The law applies to the entire country, a school or LA cannot just duck out. That’s what the courts and tribunal service are there for.

www.ipsea.org.uk/what-you-need-to-know/ehc-needs-assessments

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

Erm, what? How have I "generalized"? I merely said it never occurred to me to claim for dyspraxia. That's not a generalization that's a fact. It has nothing to do with other conditions or other children.

I'm on the enhanced rate of Pip myself for both elements. I know what a tough process it is and I know where they give points for each element. When a person who can't move, feed themselves, dress, wash, toilet etc. is denied pip but someone who goes about life as normal, works, goes out drinking on the weekend, goes shopping etc, you have to start asking questions.

It all comes down to what happens on the day, who the assessor is and in some cases how good you are at lying.

It's wrong and it's no wonder people are annoyed. For the ones who need it, the process is harrowing.

IME they are just turning down most claims in the hope you will give up. My DD's FLA was up for renewal last year. Previously MRC/LRM. Refused completely.

I wrote in for reconsideration quoting the bits of the application where she is totally different to other children her age and spelling out what she needs. Reinstated at original rate.

Adult DS went from DLA to PIP. Went to an ATOS assessment where a woman who could barely speak English decided to award him ZERO points. Again mandatory reconsideration got an award.

They just hope people will give up, which is not fair given that this is for disabled people. They know the fraud rate is miniscule but it's an easy target.

OP do ask for mandatory reconsideration and spell it out for them.

My daughter has a severe physical disability and we applied and got turned down even at tribunal. She requires surgery and intervention throughout childhood that will be ongoing into adulthood.

I would be suprised if Dyspraxia qualified for DLA unless there is an element of personal care involved? That said it's hard for Internet strangers to judge and comment when we wouldn't know all information.

From what I have read recently lots of claims are being rejected that were previously awarded. I am sure this is correct in many cases, however I am also sure that many genuine claims are being wrongly rejected. The sheer volume of claims they receive I would imagine means that less time is being spend reading exactly what is submitted.

I am new to the ins and outs of DLA but I applied for my DD2 in May when she was 20months and she was awarded, what I feel, is the correct rate within 4 weeks, so they do get it right sometimes.

I think the way you complete the forms and the strength of the evidence you can provide makes a massive difference. With the info you have provided, I don't think anyone on here can say whether your child should or shouldn't have been re-awarded as diagnosis and hospital appointments are irrelevant I believe.

If your child truly deserves it then I hope you are successful in getting it reinstated.

MyDcAreMarvel Fri 27-Oct-17 13:51:00

"corythatwas
You don't need to tell your dd you are claiming dla, why would you?"

This is all water under bridge now. But it would have affected the way I dealt with her good days. Could I for instance have let her be part of her youth theatre show on a good day, if I knew that might mean being "exposed" as a supposed fraud? Could I have felt equally relaxed about the fact that she was walking down the high street without her wheelchair?

Besides, she was of an age where she needed to be involved in decisions affecting her. There were absolutely no reasons not to. She had no learning difficulties, no reason not to be involved, and her anxiety meant she would be bound to notice and worry about any conversations taking place with me and her consultant not involving her.

Cory i feel angry on your behalf, although I think your anxieties played a part.
Firstly nobody would know but you if your dd received dla. And if you chose to say, people don't really go around judging children's disability needs.
Under age 16 a parent claims on behalf of their dc. My eldest dd was not aware of her award until she turned 16. Consultants have never discussed dla.
However it was your choice as a parent not to have claimed.

Dla is extremely hard - I am having to appeal my daughters decision

She has a central line which has an Iv nutrition connected to it 16 hours a day ( in to main vein of the heart ) for intestinal failure.
Has a free drainage bag emptying changed
Dressing changes and I have to inject her twice a day.
Has3 hour 2 oz milk feeds via jejostomy to help her liver.
Have to check Iv pump hourly through night and change her nappy x6 at night
Has also got complex congenital heart diseas , has to wear a walking boot , still in pushchair 85 percent of the time.
Blah blah the list goes on they didn't award us high rate.

We don’t discuss our sons dla with anyone. People really just don’t “get it”. They see him on a good day and think he doesn’t have care needs. They don’t realise that at 5 years old he still uses the potty and cannot wipe himself after a poo (getting him out of nappies alone is something we never thought would happen!) He has no danger awareness and would run in front of cars. He doesn’t sleep more than 3 hours a night and cannot be left unsupervised if he wakes because he will climb on furniture and pull down curtain rails (all he has in his bedroom is a bed for these reasons - we keep his toys downstairs). But on a good day he will be able to tell you what every single road sign is - uk ones and Japanese ones - and will be able to identify every single flag in the world. He has an ehcp and attends an autism specific specialist school. We get high rate dla.

Because of his high needs I haven’t been able to return to my previous role (senior marketing manager) and the dla and carers allowance means we just about manage to pay the mortgage and keep going. I sleep when he’s at school. This week being half term I have hardly slept at all.

My own health has suffered as a result and I have been diagnosed with 3 chronic long term illnesses since having ds.

If we didn’t have dla we simply wouldn’t manage or be able to eat or heat the house. Dh works full time but is on a low salary (not through want of trying, I am now unable to work because of my own health issues so it makes sense for me to be carer for ds).

Our house is in a state. We can not afford to replace our electrics which went wrong shortly after having ds so we have no working lights upstairs (just lamps). Our bathroom is leaking and we cannot afford to replace it. We already borrowed as much as we could to replace and retile our roof after a big damp and condensation problem - which didn’t show up on the survey.

Life is really, really difficult having a child with special needs- it impacts on the whole family, financially, emotionally and health wise. People who question dla really don’t understand it at all.