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At what point do you give up on NDIS?

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11 replies to this topic

#1 Caitlin Happymeal

Posted 17 September 2019 - 08:53 PM

Ok, I've vented a little about this recently. So apologies if I'm repeating myself.

DDs are twins, one with ASD level 2 and ADHD, the other with ASD level 1, ADHD and a variety of anxiety diagnoses.

DD with level 2 is now on NDIS. Other DD obviously doesn't automatically qualify because of her "aspergers" as opposed to DD with level 2. However, she is in many ways more impacted because her anxiety and ADHD are so pervasive in her everyday life. Her ADHD is mostly innatentive and she can barely get through her day in any sort of organised fashion. She needs medication, structure, constant promoting and lots and lots of support just to do basic tasks.  

Anyhoo, she's been knocked back despite, in my opinion, meeting the criteria in most of the domains. However, correspondance from NDIS indicates that she doesn't meet the criteria.

Theres been an administrative stuff up and her file went missing and a few other bumps along the road. Trying to get info that I'm entitled to under the FOI act is proving to be ridiculously difficult.

Now, the LAC who we were referred back to, when I asked her if she though it was worth appealing, has basically said not to bother, or if I do, get an advocate on board. But she didn't sound very hopeful.

My daughter falls into the black hole of "not disabled enough for NDIS" and "not quite mentally unwell enough for great support in that area". So sure, we get the mental health care plan for her psych visits, but that doesn't address the things she needs OT for. Or the social group therapy stuff that would greatly benefit her. Or a host of other supports that would benefit her greatly. This is a child who has threatened suicide on several occasions and the last threat was backed up by attempting to get to the knife block. Luckily she's only 9 and the size of a member of the lollipop guild, so I was strong enough to keep her safe.

I have almost run out of steam to fight anymore, and maybe even need a reality check... should I keep trying or am I a) being entitled expecting her to get funding and/or b) unrealistic about her right to it?

I don't know anymore. I'm over it. It shouldn't be this hard to get help.

#2 Yippee-Ki-Yay

Posted 17 September 2019 - 10:18 PM

Im tired so this will be short but I couldnt not reply.

You are absolutely entitled to request a review. I also find my 'more autistic' child is easier in most regards as his needs are more accepted and he is often more well accommodated than my other child who like yours has "milder" ASD, severe ADHD combined type and a billion mood/anxiety disorders. I have to say we have been very lucky in that both usually have received a good funding package recently, however I do remember at the outset the funding was quite poor.

If I were in your shoes, I would be requesting a new report from each of her therapists which ongoing support recommendations and I would get a disability support advocate on board.

Happy to help via PM.

#3 Chaotic Pogo

Posted 17 September 2019 - 10:49 PM

Bugger the LAC

Don’t believe a word anyone associated with NDIS tells you. The internal dysfunction and lack of knowledge is insane.

You are absolutely entitled to supports for her. I suspect the reports focus too much on ADHD and anxiety and not the functional issues that relate to ASD.

Anxiety is a bad word at NDIS. That’s mental health not disability.
Need to focus on difficulties in social participation, that kind of thing. They provide supports for that.

I’ve asked a psych to delete the word anxiety from a report I was giving to NDIS.

It’s insane, but basically it comes down to the words that were used in the reports.  You may need new reports.

#4 Lees75

Posted 18 September 2019 - 12:03 AM

You only need to demonstrate significant functional impairment in one of the 6 domains. So perhaps get your reports to focus very specifically on how the domains are impacted, but honing in on one domain that you think is the most impacted.

Have you got an OT report? Have you done a Vineland assessment?

#5 Caitlin Happymeal

Posted 18 September 2019 - 06:29 AM

Thanks guys. I so appreciate it. I will do that - she doesn't currently have an OT but has benefited immensely in the past from one. Other DD is engaged with one so I'll see if she can do the assessments mentioned.

So happy to hear that I should keep cracking on with it, even though there's not much fight left in me. I was crestfallen when I spoke to the LAC - she just seemed so uninterested.

I know they have to draw a line in the sand somewhere but cutting off the level 1s is just insane when it's such a spectrum.

#6 bubskitkat

Posted 18 September 2019 - 07:23 AM

NDIS has made me cry big ugly tears!

#7 José

Posted 18 September 2019 - 07:39 AM

id like to say keep trying.
i suppose there's no guaranteed outcome.

NDIS tend to be looking for specific things in their reports. can you find a therapist experienced and confident to write a strong report?
they also seem to give weight to paediatric letters. is there a paed involved?
i agree with CP that perhaps reports have focussed to much on the ADHD and anxiety. and really who is to say for certain whats due to ASD, whats the ADHD and what the anxiety. its most likely a complex interweaving of them all. and perhaps if she didnt have ASD she wouldnt have the anxiety. the anxiety is probably secondary to the ASD. and if its mentioned at all id say its more the result of the difficulties she has because if ASD not currently sufficiently supported ( due to lack of NDIS).
and id try to tie all functional difficulties back to ASD.

#8 Daphne27

Posted 18 September 2019 - 08:20 AM

LACs are paid by the NDIA. They are overwhelemed with work and still trying to navigate the system.

You should definitely seek a review, however also agree y o u need to go armed with the best possible reports that articulate the impact on her functioning and preferably the supports that would assist. An OT report will make all the difference. It is sometimes easier to get "access" if you give them the next steps (that is the plan requirements) all at once.

#9 Acidulous Osprey

Posted 18 September 2019 - 08:49 AM

It can be quicker to wait the three months and then resubmit your application.  Reviews are backlogged and taking a long time at the moment

ETA if she was just rejected with a letter you can resubmit evidence, it doesn't go to review.  My DH was rejected and we resubmitted a report with an amendment and he was accepted.

Edited by Acidulous Osprey, 18 September 2019 - 09:04 AM.

#10 jmjsa

Posted 18 September 2019 - 09:45 PM

I have 11 year old twins, one with asd level 1, adhd and anxiety. The other twin has asd level 2, adhd and anxiety.  Without a doubt my level 1 child is impacted way more.  We have ndis for both and it has been amazing.  Our psych told me that before we applied for our level 1 child that we should have a functional assessment done.  We did an ABAS and it can our as below 1st percentile.  We submitted this and we were accepted.

#11 123Tree

Posted 20 September 2019 - 11:28 AM

 bubskitkat, on 18 September 2019 - 07:23 AM, said:

NDIS has made me cry big ugly tears!

You aren’t the only one.

OP I would appeal. We have only been on for one year but both my Asperger boys are on NDIS and it has saved us an absolute fortune to have our speech and OT covered for a year. I am not expecting it to be reviewed at such a high rate but it has given both boys a boost in their development. I do admit to cramming the year full of appointments though.

I hope this doesn’t make you feel worse but I wanted to share my perspective.

#12 Steph116

Posted 01 October 2019 - 02:37 PM

There is so much variation in NDIS and so much seems to come down to how strong a case your LAC can put forward, I would definitely push for a review if you are not happy with the outcome.

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