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!!??

Thanks Agnes. There must be a way forward.

1. I'll appeal.
2. Book appointment at private psych
3. Wait patiently for NHS assessment.....
4. Get letter from special needs play centre.

Also we have an outreach play worker from the sure start centre who is making visual aids and a play plan for DS. She is supportive and has seen DS avoid group things and have meltdowns half way through every single sure start stay and play. If I could get something from her perhaps this would help in some small way?

appeal appeal appeal!!!! Go to CAB and find out who their specialist advisor is and get them to help you do appeal forms

Smug I do feel for you. And I do hope that you don't think I am saying your boy doesn't have needs. I can't say he does, because I can't see him, but equally there is no reason not to believe your accounts.

Having said that, I don't ever say what I think people want to hear. I think I am kind of known for that. I only ever say what my genuine perception is. In this case, I think the inconsistency is what is your downfall.

I agree with Agnes that you don't have to write as much as we do. I only write that much because DD1 is a very complex girl with no clearly defined diagnosis, and her difficulties, when viewed individually, are not especially great (S&L delay of around 2.5 years, unclear speech, fine motor difficulties, slightly low muscle tone, gross motor difficulties, learning difficulties, epilepsy, no sense of danger, etc., etc.,), yet when they are layered together, they form a girl who needs to be educated in Special school. So, for us the level of detail is vital. Whereas, for a child with ASD, there is case law that defines ASD as an organic neurological disability, so pretty much the only consideration is what level of DLA to award, not whether to award in the first place, IMO.

I'm glad the new preschool are supportive, and the Outreach play worker. They might be your first port of call.

"Private psych is well aware that he wont get paid if he diagnoses ASD."

Picking up on this...why?

Who wouldn't pay him, you, or your insurance, and why?

Surely the only diagnosis you want is the correct one, so I don't quite understand.

Sorry if there is a back story to that which I have missed

I was thinking similar, isnt it only CAMHS, who dont get paid for ASD dx? (I understand the insurance bit, but was wondering in general)

Medical Insurer wont pay for anything the second you mention autism or developmental delay. Our insurance company have even been difficult about paying for the diagnosis. I have had to go through the complaints process even to get the diagnosis appointments and they are only issuing one appointment at a time. This has required lengthy letters from our psych who is less than happy about having to write them. If we get a diagnosis of autism then all future treatment stops.

Im sure that the psych is more professional than that but it does make me wonder.

Of course I want the correct diagnosis but anxiety is not the right one. We have followed all advice from the psych and the situation has got worse.

This is common with PDA. It is related to and routed in anxiety but it is not simply anxiety.

I dont want to teach anyone to suck eggs but this is a quote from NAS about PDA.

"People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges."

Anxiety is usually a symptom of something else. Ds suffers with severe anxiety, the only signs of this are direct inwards, so to others it is hidden. (although through 1:1 therapy at CAMHS, he is able to express his anxieties to them) but i would say before he got his DX of ASD, i was very much doubted by CAMHS, as school was saying i was an over anxious mother and they didnt see any signs of ASD etc, etc, pretty similar to your situation.

The quote about being controlling and dominating, describes ds well too. He doesnt scream or cry, he just wants to control everything, but in a quiet way.

I spent 3 years trying to get a dx and being doubted by school and professionals alike.

It was HV who raised her concerns when ds was 2 years old and referred to Paed, i didnt have any concerns at the time.

The minute i did start to have concerns and voice these and push for dx, i then became an over anxious mother. I have a copy of ds's school file and school had actually written that i was "an over anxious mother, who would require careful handling", this info was obviously passed to CAMHS and i dread to think what was said verbally, the first few months at CAMHS this is exactly how i was treated. (they have since got to know ds and me and are now very much on side) but i wasnt suffering from depression or dp wasnt in rehab as in your situation, if this was the case, then i would probably be in exactly the same situation as you. You will have to fight even harder than me, because they will be biased, based on that information alone.

I will say those 3 years were wasted, as the professionals i was referred to were not specialists in ASD.

The minute i was referred to ASD specialist SALT and Paed, it was a totally different story.

I understand PDA

I still think that DLA isn't going to solve your issues, right now.

Given your situation, rightly or wrongly, I think that you are going to find a claim for DLA difficult to achieve.

I also think that if you did successfully persue a claim for DLA, right now given your current situation it would be counterproductive.

I think that you have many professionals who either can't indentify that your DS has difficulties, agree that something is a bit amiss, but think it is your parenting, or think he is 'just' anxious.

Crucially, I think that you are not getting the help you need, practically or emotionally.

I feel (and it is only an opinion) that investing your energies in DLA when you already have Social Services claiming that you are trying to foist a label of Disability of on your 'not necessarily disabled' son, is going to cause you HUGE problems.

Don't misunderstand me. I have been through the mill with DD1. I know what it feels like to have concerns about my DD and no-one listening. But my timeline went something like this:

1. October 2006 -10 months raise concern about DD1 babble- fobbed off. 2)March 2007 - 15 months raise concern about pulling to stand -fobbed off. 3)May 2007 - 17 months, convince HV for Physio referall.
2. June 2007 Physio fob off, with return app for 20 months. 5)August 2007 Return app at 20 months - discharged.
3. November 2007 Walks at 23 months.
4. Struggle with DD1 until 2.6.
5. June 2008 2.6 start preshchool. Comments about 'immature gait'
6. Summer holidays
7. September 2008 Return to preschool- 2 weeks in, asked for Area Inco to observe.
8. September 2008 Area Inco recommends 1:1 -DD1 is 'immature' I ask for Paed referral.
9. October 2008 4 weeks later, DD1 falls over for no reason - visit to GP.
10. Fast-track to hospital, kept over night. Tests booked.
11. November 2008 - Global Developmental Delay dx
12. January 2009 - EEG results, epilepsy
13. January 2009 - Apply for DLA
14. March 2009 - DLA result HRC
15. May 2009 - MRI scan results - Brain malformation
16. Social Services Initial Assessment - Refused 'not disabled enough' 20)September 2009 - Apply for Statement
17. January 2010 - Statement finalised: Special School.
18. March 2011 - Apply for reassessment by Social Services
19. May 2011 - Accepted into Children with Disabilities team SS
20. July 2011 - Part way through Core Assessment.

So what I am saying, is that right now, I think if you persue DLA, you are going to get more suspicions from SS.

I would say your priority is still getting your DS's needs met, and recognised. Then DLA will follow.

Have been following your story Smug, and am so sorry things are the way they are

I applied for DLA three times for my 14 year old DD. The first time she was aged 7, then again at 11, and the last time about two month back - where she was finally given her first award. Although there had been many many suggestions over the years as to what DDs issues were, it has only been over the past two year or so that she has finally had some input from various professionals. After the second DLA application, I was so desparate for her to be awarded it, mainly for the same reason you said earlier in this thread - for some recognition of the difficulties and additional needs she has. I admit that after this application was refused (further refused on appeal) I gave up chasing DLA, and instead focussed on helping DD with her mounting problems.

Then last year, her CAMHS worker suggested I apply again - two years after the last application - but I couldnt face another rejection. So, we continued with seeing the Ed Pysch, CAMHS, OT, SALT etc. and I kept every bit of correspondence from them, as well as each report. Two month back I felt that I had enough 'evidence' of her additional needs, so sent it all off with her application. Within 5 weeks she was awarded medium care and low mobility.

The reason for my essay - I guess I kind of did what Lougle has suggested you do, stopped looking for DLA to be some kind of proof that DD has additional needs, and instead concentrated on getting her the proper help that she needs, although the extra financial help that DLA brings certainly helps.

I wish you well, and hope that things get a little easier for you soon, and for your DS Its so frustrating, having to wait months and months for various assessments.

Oh, just read that back - am certainly not saying that you shouldnt appeal your DLA decision, just sharing my experience

Justa, I can cope with disagreement - I do feel strongly about this one though.

This, to me, is not about pre or post diagnosis.

But as a parent, Smug must do what she feels is correct.

Lougle, I read your post which says not to invest all my energy in applying for DLA. Our current situation is that assessment will not be until November, possibly September. I am not just applying for DLA, I am following the complaint process regarding length of time to assess DS, I am having the CAF process which has referred DS for SALT, portage, early years team at LEA, put in a statement request (also refused to assess), seeing private psych, outreach play worker, I requested social services as despite the support offered so far we are finding life difficult and finding that we get lots of doors closed in our face as they say DS does not have a disability or acceptable diagnosis. Portage waiting list is a year and the ed psych we were referred to won't assess DS until we go to the assessment centre. Perhaps I should take a break, its just that the day is so hard without any proper support from someone who recognises that DS has pda or something that responds well to pda strategies. I just want to speak to someone who will talk to me, accepting what I say as honest, who doesn't doubt my parenting, who will actually help me or my DS.

Oh, and the difference, I feel, is that when you apply with supporting evidence, that you feel warrants DLA, then get refused, it seems illogical. You think 'hold on, x professional says xyz, but the dla decision says the exact opposite.' In that situation, I have, I would and I will continue to advise that the poster appeals.

This is a situation where the OP says she doesn't have evidence, and the very people who could supply evidence refuse to. That is why I don't feel an appeal is a good thing at this stage.

x-post, sorry Smug.

The trouble is, that all children respond well to some PDA strategies, and all children respond well to some ASD strategies, etc. That in itself doesn't warrant the label 'disability'.

Equally, a child can have SN without automatically having a 'disability'.

I think one of the very first adjustments that all parents who have a child with a neurological disability of any sort, has to accept, is that their parenting has to change. That doesn't mean that their parenting is wrong, or inadequate, just that their child has needs which won't be met with 'normal' parenting.

The other thing that is important to realise, is that there will be elements of 'disability' and elements of 'behaviour' in any child with a neurological disability. My DD1 is 'disabled' - she is registered as such, now accepted by SS as such, goes to special school, etc. But, when she sees the LD nurse walk through the door, that smile comes on her face, and she kicks off - that's not her disability, it's behaviour.

Turning the tables slightly, why do you think people are reluctant to support you?

I do agree with lougle the DLA have done everything right the have sought evidence and those involved have refused to confirm. This happen alot pre dx as others involved do not want to confirm problems until they know there is a dx. I have known friends whose pre school say everything is ok and then as soon as a dx is made they respond by telling the parents of the problems they have and they will apply for 1:1. Some professional just do not want the take the risk of writing a report without a dx. It is a case of finding out what was written in the reports and chasing a dx. However you have nothing to lose in appealing .

I'm not sure what DLA have done to verify my application though, hence me asking for copies of the information so I can see. Lougle, I think its because DS doesn't do enough of the PDA obvious behaviour in front of people. Also I don't think the pead even knew what PDA was when we saw him. He just saw a quiet boy who refused to speak. Social services knew they couldn't help me and again, they saw a boy who just seemed a bit cross, a bit anxious, she seems to have taken DS running out into road in front of cars as normal too. its not even in the report.

If Smug is anything like us then getting DLA is essential to keeping our head above water. Its not an optional extra for us. If you appeal and win it will be backdated. If you wait until the experts have got their act together then you will only be able to claim from then on.
If you really think PDA then I would ask your GP for an out of area referral to a specialist centre which handle the more difficult diagnoses eg Elizabeth Newson Centre, Great Ormond St, Lorna Wing etc. They do a 1-2 day assessment so chances of a child hiding it for that period of time is unlikely.
I am being told by our local advice charity that every single request for DLA for any child without a confirmed dx is being refused. This may just be a blanket policy, I would appeal - they usually review any case before it goes to appeal - and see what happens. It is entirely possible that when they review it they suddenly decide there are extra needs here and they are using a blanket policy just to reduce the number of claims.
Lots of children with ASD only show serious problems at home. You do have evidence, as you say you can video it.
I would say you have nothing to lose by at least challenging it and asking for a review
this says you do not need a dx to get DLA

Of course you don't need a dx to get DLA. DD1 is over 3 years in and has no dx

And it isn't about the money. Of course money is an essential commodity