To Whom It May Concern:

    I’m terrified about the prospect of mandatory Independent Assessments. I’m terrified my child won’t receive the help he will need in the future to become a valued member of his community who works, has interests, hobbies and friends.

         I have not yet progressed with an application for NDIS for my son aged 11 as, despite having a list of diagnosed disabilities (and being eligible for support unit classrooms at school) he does not have any diagnoses which would allow him automatic access to the scheme. He currently has diagnoses of ASD level 1, ADHD, Specific Learning Difficulties (comprehension), Communication Disorder and Anxiety).

 We need proof of his deficiencies, of how he isn’t the same as his peers – that's fair enough – and I’ve chosen to wait and not receive funding while his differences were less, and while we were able to make accommodations (including changing schools to one 16km away, and ensuring an adult is available any time he wishes to go outside the house to see his peers or just enjoy a scooter or bike ride).

   So he has needs, and he’s different from his peers. The terrifying thing for me is the idea of a new graduate (as evidenced in job advertisements) undertaking an assessment on my child, and their input being the only information used to determine his access to assistance. A new graduate without extensive experience will see my son as quirky. He’s social, he’s confident and believes he is competent at everything he does. He will tell them that he needs no assistance, that he has friends and that he’s completely independent – then he will talk their ear off about computer games,

And then I’ll need to break his heart. I’ll need to sit there and tell this same stranger about all the thigs he can’t do. That he is unable to read social situations which jut this year almost led him to being assaulted by a group of kids his age at a skate park. That our local scouts group didn’t want him because he required too much extra help, that our local school could see how much his social skills would make him a target for his peers that they suggested he move into a support unit class. (FYI he’s currently in mainstream year 6 with very limited assistance/modifications to his learning materials – so that class wasn’t for educational reasons.) I’d have to tell them how he can’t tie his shoelaces, he can’t shower independently, and that due to executive function issues he’s going to need technology or other help to perform many household tasks as he gets older (among other things).

That who, and what he is is viewed as “less”. That this stranger isn’t interested in how well he reads, or his high scores, or his amazing visual/spacial skills – all they want to know about is what he can’t do. He will never see me having this same conversation about myself of his sister, that people only want to know what he can and can’t do – the rest of society isn’t asked.

He’s always known about his diagnoses; he understands how they may make things difficult. But this will be the first time he will be told the realities about just how big the gap between himself and his peers is getting.

I also shouldn’t have to send him out of the room while talking about his – he has the right to participate in, and contribute to any discussion about his needs and future.

I feel his existing provider (GP) and his school have a very strong understanding of how his disabilities affect his functioning across all domains, some of it they may even be more accurate than I am – they are the ones that spend more time with 11 year olds, and are more au fait with typical 11-year-old development than I am.

I believe Independent Assessments should be offered as an alternative – if people are unable to fund expensive assessments, if they can’t get specialist appointments (as most have a 6-12 month waiting list right now), or if they seek a second piece of evidence, or if they seek a different type of evidence after refusal of entry to the scheme.

Let the (potential) participant decide - allow them the choice and control that the NDIA claims they allow all existing participants. Let them (and their families) choose the way that will work best for their individual circumstances and needs.

From a mum worried about her son’s future.