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.

[JigglyTuff]

Gizmo: some of the things my DS with dyspraxia can’t do:
open a water bottle
cut food
manage most clothes fastenings
Only just learned to wipe his own bum
tolerate shower water on his skin
walk up a flight of steps one foot at a time
Walk along a pavement without tripping over
Clean his teeth adequately
Process verbal instructions
Dance, run, swim, ride a bike, kick a ball, use a pair of scissors, do up a car seat belt, open a car door, prepare a meal

I could go on but you get the picture. He’s 11, he’s very bright and he can’t do things most six year olds can do. I am going to have to take him to secondary school because he is incapable of crossing a road/walking on a pavement with supervision and get home to feed him because he can’t even make himself a sandwich.

Thankfully you’re not in charge of DLA decisions

[Ceto]

I'd like to clarify, by the way, that in suggesting people push for EHCPs, I'm not saying that these are in any way essential for benefits purposes. It's just that, for obvious reasons, it's normally very helpful to the child concerned anyway if an EHCP is in place.

[Ceto]

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

It's worth having a good look at the SEN Code of Practice 2015, especially chapter 9. Amongst other matters, it emphasises that, when looking at progress, the local authority must take into account the fact that the child may only be making progress because they are receiving support well beyond what is normally available in mainstream schools. In your case, woosey, it sounds as if progress isn't necessarily the issue; what is is the fact that the school placement is only sustainable at all because the school is going so far above and beyond its duty. The school cannot say that it can meet a child's needs within mainstream resources when it is blatantly clear that they can't.

If the school supports the application, they need ideally to say that, although they are providing full time support at the moment, they can't continue (or almost certainly can't). Given the state of school funding at the moment, I'm amazed that they're managing anyway.

[taratill]

momtowed I am in a very similar situation to you, DS 11 ASD can be violent etc at home, but when he is at school there are no problems to speak of academically.

We have an ECHP, this was granted because DS went through a period of anxiety and school refusal, rather than academic issues.

My understanding is that even if there are no academic issues an ECHP can provide access to services at school to reduce anxiety and therefore reduce issues at home.

The problem is that schools and LEAs in particular are often reluctant to grant them. I would take some advice from an education law expert either at IPsEA or some law firms offer free legal consultations. If you push this and succeed it could really make a difference to your home life.

I was also given the run around by CAHMs, I wrote to my MP and called the police when my son was being violent. We were eventually seen and anxiety meds have really helped things calm down .

[lemonsandlimes123]

in defence of sendiass they are not so much in cahoots as not very effective and normally not very knowledgeable and will therefore quite often believe what the SEN managers tell them even though it's a pile of shit!

[coffeemachine]

Just another one to say don't trust sendiass. They are statutory Requirement, an LA MUST set up sendiass to support parents. So, obviously they are not impartial! Effectively in our borough they are just a mechanism for the LA to pass the buck back to schools.

yes to this. In our LA their offices are even on the same floor as some of the Sen teams. they are all in cahoots. Always, always get independent advice such as Ipsea and Sossen.

[woosey35]

Mumtowed - what do the school remark on the situation?? Do they acknowledge your sons difficulties? Surely if they were experiencing problems in coping then they would support your application?? Sounds very stressful for you.

[woosey35]

Lifeisforliving - I’m so sorry you’re not getting this support. That’s awful. Sounds to me you deserve it more than most. Do you get any support or respite?

[imip]

Just another one to say don't trust sendiass. They are statutory Requirement, an LA MUST set up sendiass to support parents. So, obviously they are not impartial! Effectively in our borough they are just a mechanism for the LA to pass the buck back to schools.

I'm echoing other posters in recommending IPSEA and SOSSEN. I have a dd9 with ASD in midrate DLA. To look st her, you'd think she is 'fine', but she's not good at self care (doesn't wipe bum, hair regularly gets to the point that we need to cut knots out). She self harms, is starting to refuse to eat to punish herself and is s flight risk. We've been fighting for an EHCP for 14 months. We still haven't received our draft plan. We've been to tribunal, where the LA conceded - we are in it for the long haul!

[Fairylea]

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.

[Lifeisforliving25]

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.

[MyDcAreMarvel]

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.

[corythatwas]

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.

[CheeseCrackersAndWine]

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.

[Gizmo2206]

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.

[Ewanwhosearmy]

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.

[ProfessorCat]

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.

[Worriedobsessive]

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

[Worriedobsessive]

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.

[MomToWedThorFriday]

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.

[Worriedobsessive]

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.

[lemonsandlimes123]

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

[MomToWedThorFriday]

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.

[MiddleAgedMinger]

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.

[MyDcAreMarvel]

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