Forms, forms, forms and more forms

Ela1702

Hi all, our son was diagnosed with ASD only two months ago so I suppose I'm going to be on this forum quite a bit from now on. It all started exactly a year ago when we requested the AON. Whoever requested one of these will know that the initial form can be quite comprehensive and detailed. But since it started and especially since we got the diagnosis we seem to be 'swimming' in forms and most of them have the exact same questions e.g. can your child dress him/herself? . I'm trying to avoid this post becoming just one long moan, so I will get straight to the point. At the moment we have the pleasure of filling in the Domiciliary Care Allowance application form (carer's allowance). We were told that most of these get refused on the first application. We have put so much time and detail into ours, and we also have a VERY long professional report to accompany it (62pages more exactly) which specifically says under entitlements that we should apply for this. The school said that this is the most comprehensive report they have seen. I am taking the form to the GP tomorrow to get them to fill in their sections. My question is, has anybody applied in the last year and got approved on the first go? If yes, I would love to know if they can give us any tips. I will most certainly keep a copy of the form in case we have to submit it a second time, but we REALLY don't want to have to do that. All the information needed is in the report, I can't understand why when sending in the professional report these forms have to be filled in as well. The ASD diagnosis took over our lives anyway, between who to tell and who not to tell, trying to find ways to help the child at home now that we know what kind of help he needs, trying to do research on how to do this best, trying to keep a good connection/communication with the school (he is in 1st class, 7yrs old), trying to come to terms with it ourselves, trying to educate the more elderly members of the family who find it harder to understand the condition and might not be great on the whole 'Google' research front, worrying about siblings coping and not feeling left out, dealing with the HSE trying to put things into place and begging for them to arrange for him the resources needed ALREADY (he needs OT, Speech and language and psychology help) and all this on top of everyday life, like work and looking after house, shopping, cooking etc. And let's not forget on top of all of this the actual very demanding work that comes with looking after an autistic child. This is such an overwhelming time for us, for the last two evenings we were still filling in forms at 11pm. Again, I am a normally a positive enough person and all this complaining about the system that everybody does which makes it turn into background noise was never my thing, but I am exhausted, exasperated, tired and frustrated. Why is there no easier, better structured, all in one place kind of approach once the diagnosis is given, is beyond me. Any help would be much appreciated. If there's anybody else going through the same let me know, we can complain together. ;-) I must add as well, that we were just refused access to an SNA which we are trying to appeal at the moment. AAAAAARRRRRGGGHHHHHHH!

Vorsprung

We got it on our first go. We didn't get our GP to fill in the medical report, we just sent in the psychology and SLT reports and we were approved, with the allowance backdated by 6 months.

Ela1702

Thanks Vorsprung- if you don't mind me asking how come you got it backdated? Did you put down a reason why you didn't apply straight away or did it take them so long to come back to you?

Otsuka

Following.

My DD ( 6) was diagnosed with ASD in September. Very similar profile but typically for a girl she hides it well in school and completely meltsdown at home.

Also in the process of applying for DCA...

Would welcome any advise on filling out form also. I don't really want to join the Facebook group as its a bit public and I've already had too many " god she must be very mild " from the hand full of people I've told .

Vorsprung

Ela1702 wrote: »

Thanks Vorsprung- if you don't mind me asking how come you got it backdated? Did you put down a reason why you didn't apply straight away or did it take them so long to come back to you?

No idea why it was backdated! We had our son on a public SLT waiting list for about 6 months before we got assessed,and we got a psychology report around the same time, it might have been the wait before we got assessments but couldn't be sure. The letter said that a 6 month backdating was the maximum they'd allow.

Ela1702

Hi Otsuka, the Facebook page is private and none of your other FB friends would see your post if you decide to put something up there and ask for help with the form. We are nearly done with ours, we've put as much detail as we could into it. Some people recommend that you include a family impact statement or a diary, we are not going to do that as we feel the form and the report should have enough info, other people who didn't include those got approved so here's to hoping. Our son is exactly the opposite of your daughter, at home he's ok, but difficult behavior at school and other outside the home activities. The school and psychologist that diagnosed him put together a care needs letter that should help us dispute the decision regarding him not getting an SNA, it shows basically what difficulties he has in school and why he needs an SNA, we are including that as well with the DCA application and putting a cover letter explaining what we included with our application and explaining that although the care needs letter is specific to his care needs at school most of them apply at home too. If your daughter doesn't have care needs at school it might not apply to you, but what I'm trying to say is to include anything else you have regarding her care needs, they want to know exactly how she needs more care than another NT child the same age. We are now also looking at claiming back Incapacitated Child Tax credit, another long journey for that. And possibly to change my hours at work in order to apply for carers benefit. So much paper work and red tape, it's completely taken over our lives. So I wish you lots of strength to get through it all and come out at the other end supported by the state with the help your DS deserves. The way things are going at the moment we might end up having to pay for therapies out of our own pocket so if we get some of these benefits it will hopefully help with the costs of these. If I can help with anything else do not hesitate to ask. It might take me a while to reply with everything going on, but I'll do my best.