Turned down for DLA - what now?

[smugtandemfeeder]

OK so DLA have turned us down. We had contact-a-family help us fill in the form, plus we sent of the paed referral letter, plus a twenty page additional info document written by me.

DLA say they have had a phone call as extra evidence and 'other information'. I have asked for details/copies of this information but this will take two weeks.

The only information I know they requested was from the crap preschool. Perhaps the social worker called them.

Would they really take preschool evidence over paed referral?

What do I do now? Ask them to reconsider, appeal or give up?

DS is 3, is being assessed for ASD, however he hides his behaviour well in many circumstances, eg preschool he just seems a bit anxious at the moment, assessments he just seems a bit anxious. Is it possible to get DLA when they hide their symptoms or do I need to wait for firmer diagnosis. DS has a working diagnosis of anxiety and wakes up 4 times a night screaming, plus gets up at 4 am, is not toilet trained, smears poo on the walls, has severe tantrums all day at home. However I dont have a lot of evidence of this. I have videoed lots of it but again this has been ignored so far by the people they got extra reports from.

Thicker skin growing as we speak. Why does everyone seem to think im lying!!??

Lougle is indeed a genius and I too want a Lougle installed on my laptop!

What causes your DS to have anaphylaxis, smug??

Ive just added a watch to this thread for when my DLA renewal is due

"The big AP shock was in the middle of the night and was severe and he had needed an ambulance and he was rushed to the resuccitation (SP!) room at A&E after having adrenaline"

You didnt mention this in your example.

When i went to DLA tribunal and i was saying that i have to be very aware of ds near roads because he could run out into the road.

Their first question was has he ever run out into the road, if i had said no, their next question would have been then why do i have to keep a very close eye on him then

Do you see what i mean.

See again, I feel for you, but it's all so wishy washy, isn't it? You don't know what he is allergic to, you don't know if he is going to have a further episode of shock.

How do you monitor him for signs of shock? Do you wake regularly through the night to check on him?

The other question I would have (please don't think I am being overly critical), is why, if he falls out of bed regularly, do you not just have him sleeping on a mattress on the floor? Or simply use a bedrail?

I guess what I'm saying, is that you need to demonstrate a need for that care. Not just that you like to do it, or it makes you feel safer. But why do you need to stop him falling out of bed, when there are products which are available cheaply which would prevent that?

Just as, for mobility, if a person is very mobile with crutches, but without them is virtually unable to walk, their DLA application would be refused on the basis of 'use the damn crutches, you fool!'

Another example, probably full of holes too. This example is quite confusing. DS is scared of the loo and refuses to use it but sometimes he isnt scared but has to be in full control, which is when he smears poo and wont let us assist him.

Took me weeks to write all this, I had read lots of threads on MN and used the cerebra guide and contact a family. Im not a stupid person, how on earth do people ever get through this process if they struggle at all with things like this. Seems like you need to do a PhD in DLA to demonstrate the problems. I tried! I can see all your valid points.

Anaphylaxis - I have mentioned this is a few of the questions. In some places I probably answered it better in a lot more detail. I could probably have copied and pasted that into this answer. And added a lot more detail.

DS has run out in front of cars lots of times. Cycled off down a road on a hill out of a park we take him too.

Where do I go from here?

.................................................................................................

Does your child have difficulties coping with their toilet needs?

DS is not toilet trained and so wears nappies. He is afraid of the lavatory and becomes anxious when encouraged to use it. When he becomes distressed he empties his bowels and bladder in inappropriate places, for example on the carpet, on the patio, on the kitchen floor, out of the kitchen window, in the bath with siblings and in the mop bucket. DS has loose bowel movements and often needs to have a wash after a bowel movement. He does not yet know when he is wearing a nappy and when he is not and if not wearing a nappy will empty his bladder through his clothes. This makes him very distressed. He becomes distressed if you try to apply some nappy cream to his skin if he has become sore. On a better day he is not anxious and will decide to use the potty or lavatory unaided which is unpredictable and can cause hygiene problems. He will lock himself inside the bathroom and refuse assistance and smear poo on the walls. He needs encouragement to wash his hands but becomes distressed if you try to force him to wash his hands. On a bad day if you try to assist DS with using a potty or a lavatory he will purposefully defecate in an inappropriate place or will smear bowel movements onto inappropriate places. When using public lavatories he becomes especially anxious as he is afraid of all the unfamiliar equipment such as hand towel dispensers, hand dryers, loud flushes. It is difficult on a bad day to get DS to wear a nappy at all.

DS needs a high level of encouragement and support to become toilet trained. He needs help to wash after a particularly bad bowel movement. He needs emotional support when he becomes distressed because he is afraid to use the toilet, when he urinates through his clothes, or when you try to encourage more acceptable behaviour. DS needs support when out in public to avoid distress caused by public lavatories. DS needs an adult to change his nappy. On a bad day DS needs encouragement to wear a nappy at all and always needs encouragement to have his nappy changed as this causes him distress.

Without this help DS would become emotionally distresses as his basic needs would not be met. His toilet habits would pose a health hazard to other members of the house and he would damage items within the home.

Other children of the same age can use a potty or lavatory with less support and less distress. They do not need as much encouragement to empty their bowels or bladder in an appropriate way. They do not smear bowel movements.

DSs anaphylaxis cause is unknown. He has had lots of allergy tests so we know what doesnt cause it but we dont know what does. They put it down to a virus but he does have episodes where he gets a bit blotchy and puffy and whinges even more than normal. When he does this we give him piriton and he gets better. We just have to keep an eye out as we never know if the AS will happen again like it did before.

Maybe I should post them my social services report as evidence - sarcastic

My local vol agency who helps with DLA says everyone without a diagnosis is getting automatically turned down at the moment. Which given our PCT currently does not have the means to diagnose any child over 7 (and soon to be 5) due to CAMHS refusing to do it without payment anymore means alot of people who won't get DLA. If you appeal and needs are as high as you say will almost certainly back down. By the time of the appeal they will have either got a dr to do an assessment or you will have a diagnosis.

Usually they will do another review before the actual appeal

Perhaps your neighbours would verify the disturbed nights if they get woken too? Or is it just us who keeps the street awake to the joys of the abc song

I would take it as just a default knee jerk decision at the moment and push on to round 2.

The thing to remember, is that DLA is for children with a disability. So a child who is, for example, very challenging but has no SN will not qualify for DLA, even if their behaviour exactly matches that of a child with a SN.

The other thing to remember, is that not every child will qualify for DLA just because the parents apply. There is a high threshold for a good reason.

So, there is a bit of game playing to be done. If you want evidence, you need your child to be in environments like pre-school, so that they can comment.

If your child is absolutely fine at pre-school, etc., it is going to be hard to justify 'constant care'. However, if they still need support above what is usually provided, it is easier.

Thanks Lougle. We think DS has pathological demand avoidance which would be a disability. I guess we just need more evidence which will probably have to come from the assessment centre.

He isnt fine in school, he has 1:1 and additional needs but he is much better than at home. At the moment the school are in denial a bit and arent noting down the small things he does. He is refusing to have his nappy changed and they arent pushing him on this yet as its early days. He is also holding poo in all day. Will encourage them to note it all down.

With PDA they can seem like they are ok in school as they become passive but dont actually take in what they look like they are learning.

We believe DS does have a disability, otherwise we wouldnt be trying to claim DLA.

Of course you do

There is no point in people saying 'that's rubbish, appeal' if you won't have a good case for winning. The way to get a good case for winning, is to know why you lost.

I think it is likely in this case, that as parents, you have noticed things that are outside the normal limits of a child of your DS's age, but no outside professionals are prepared to see them in the way you do, or at least if they do, they aren't willing to support you in your claim. Which is a worry.

Anxiety is, like other conditions, a wide spectrum. Some children are 'highly strung'. DD2 is (I think) NT and 3. She has an absolute crisis if I try and put a piece of clothing on her with either 2 or 4 buttons, because she is '3'. And the distress she was in because her skirt had a bow on the front, but a butterfly on the back. Couldn't cope at all, because she couldn't see both at once.

But, if your DS is highly anxious all the time, that is different. I still think your main concentration should be going on getting the support of professionals rather than the DLA claim. Because I think you are unlikely to get a successful outcome without the support of those that they ask.

DS is anxious all the time and spends a huge proportion of the day screaming. I guess I havent put it across well on this thread, perhaps because I have done so on lots of other threads and didnt want to repeat myself but in isolation and a tired state perhaps I havent explained myself well here.

We are struggling financially as I am on maternity leave. We are not getting much useful support from the professionals as they are leaving us hanging while we wait the year long wait for the assessment centre. I am trying my best to research DSs problems myself and find solutions to the behavioural problems we face and have had some support from autism outreach which has helped. DLA would help us pay for SALT and ED Pych private assessment.

DLA would also give us the validation we are looking for that we are not going mad and that DS does have a disability.

I also need to go back to the private psych who was assessing DS and who provided a working diagnosis of anxiety. He didnt want to diagnose anything else at the time as DS was only 2.5 and he wanted to reassess once DS was 3. But we have had merry hell from the medical insurance trying to get approval to go back, and merry hell from the pysch who couldnt be bothered to help us get approval to go back. If that makes sense.

I will put in appeal as it will fit nicely with the timescales for assessment centre diagnosis (if we get on one).

Interesting, Justa, because the message I'm getting is that Preschool won't support, Private dx is anxiety, but OP thinks ASD/PDA, CAMHS won't contribute anything at all, SS are blaming parenting, and not one professional is actually supporting the OP with her application.

So that is why I am suggesting that getting the profs to understand the problems she is facing is the priority. DLA will come in time, but right now, I think there are other priorities here. But only my opinion, ofc.

We have the NHS paed who assessed DS and says DS probably has ASD and needs to be assessed at specialist asssessment centre.

CAMHS was a psychologist so not as qualified as the NHS pead.

Private psych is well aware that he wont get paid if he diagnoses ASD. I have no idea what he will diagnose when I go back and see him but we have followed all his reccomendations and they havent worked so Lougle you are right I do need to go back to him for further reassessment. Its just been very very difficult to get medical insurance to agree and to get private psych to help get approval. Months of trying and I have just got approval for one more consultation.

Cant pay for anything ourselves at the moment. We are living on nothing. If I felt that I could leave DS I would go back to work sooner but I feel he needs me.

New preschool are great but DS has only only been going for a few weeks.

Health Visitor is supportive. She should have given a report but no idea what she said.

SENCo at old preschool was very supportive, home visits, 1:1, really seemed to care. Head teacher at old preschool and other teachers were not supportive and thoroughly unsupportive and overruled SENco. SENco was totally lacking in confidence and frustratingly wouldnt stand up for us.

I think you can get a DLA Dr to assess. I think a friend filled out the form and for the bit with supporting evidence left it blank and just ticked the box asking for an assessment - does that option still exist?

Also we get HRC and I would say we do alot less than Lougle and put in a lot less detail - did cerebra model. Accept with new govt etc things probably been tightened up but my reading of this thread is that you shouldn't have to put this amount of detail in. Agree if you are aiming for HRC you might need to, but to have been turned down even for LRC makes me think its just a standard knock back to see if you will carry on. As I say locally the word is this is happening across the board. I see it not that you have not said enough - although Lougles suggestions are obviously the best text book answer, but that they are just seeing whether you will pursue it.

I don't think you should have to spend money yourself on reports. I would appeal. If they defend it then you might be able to get legal aid (is it in the name of the child? - until the legal aid axe falls anyway) to get evidence to appeal it. But it may be just that the DLA people are turning down everything first time to cut costs and only those who pursue it will get properly considered.

Special needs play centre we go to have seen DS having his mega meltdowns, trying to hit staff when they talk to him, refusing to talk, and hitting/kicking other children there. I could ask them for a letter.

Argh, im so cross with the CAMHS psychologist. She has seen the meltdowns, she knows DS wakes up throughout the night and needs one of us in bed with him to get him to sleep, she spent a year and a half trying to help us get him to sleep, nothing worked, nothing. She knows he has night terrors.

But she writes stupid letters saying DS is a busy boy and wont support us. Argh, im so cross.

Im not trying to get HRC.