Submissions to the Australian government inquiry are still being accepted as they’ve had a problem with the website. I’ve edited it a bit to take some details out. We could add this post to the others in about me living with ADHD and not getting a diagnosis till my late 40s. The first post in that series is Returning to self.

Thank you for the opportunity to make a submission to the Inquiry. I will concentrate my response on the following Terms of Reference:

• (a) adequacy of access to ADHD diagnosis;
• (b) adequacy of access to supports after an ADHD assessment;
• (d) impact of gender bias in ADHD assessment, support services and research;
• (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
• (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
• (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
• (f) the role of the National Disability Insurance Scheme in supporting people with ADHD, with particular emphasis on the scheme’s responsibility to recognise ADHD as a primary disability;

My husband and I are parents to an 11-year-old boy, A, who was diagnosed with ADHD in September 2017. However, to access support from the NDIA, A’s diagnosis was revised in September 2019 to: “Autism Spectrum Disorder Level 2, with speech and language delays, and ADHD”.

The two diagnoses cause different issues and require different management, but had they been listed as ADHD first, we were told we would be ineligible for NDIS funding – by the NDIA coordinator when we initially sought funding, by the paediatrician and by the psychologist. To get these updated reports, we paid for psychologist, speech pathology and paediatric testing; and their respective report writing time, twice in three years.

It is impossible to comment on the inquiry without referring to A’s schooling, even if support for A is supposed to come from his school, not the NDIA. I think the NDIA forget that for children at school, they need wrap-around support. For that reason, I will be addressing it through (b) adequacy of access to supports after an ADHD assessment.

In February of 2023, (A is now in Grade 6), we had another cost of meeting with a different Educational Psychologist for further testing. This was to re-confirm the adjustments and modifications already noted in his Individual Learning Plans and term/ final reports from Grade 3 onwards. This information, nor are the details we have on file with the NDIA, are enough to support A through to Grade 12. Also, for these tests to be completed in February 2023, I had to book in November 2022.

Over the course of the testing in February, it was identified that A lives with Dyslexia and Dysgraphia. Unfortunately, because A can articulate well and doesn’t have a low IQ, he is not suitable for a Vineland test to unlock funding for him for a dedicated key worker at school. Notwithstanding this, he is unable to complete most tasks without either support, reminders, or additional time. His measured output continues to be low; he’s testing around 18 months behind his peers with reading and writing skills.

A will not get nominated for ‘excellence’ awards, nor reading prizes, as his brain simply does not work in the way they’re judged. He’s scattered, constantly forgetting things, will drift off in the middle of lessons and when he gets home from school, he’s basically fried. He’s physically unable to do anything other than decompress after the day. Homework is an ongoing battle for him, he’s simply too tired to complete even the simplest of tasks, including reading for 15 minutes. He’s constantly comparing himself to the children in his class and why they’re reading chapter books; what was identified as him self-regulating at Kinder by turning his back on the room and looking through books, has disappeared into anxiety and comparison. His tiredness at the end of each day also has a knock-on effect into team sports. Instead of being a thing to enjoy, A sees them as a challenge that he has to ‘mask’ at. Often getting overwhelmed with people not being ‘ADHD aware’ shouting at him. He doesn’t understand they’re encouraging him; he only hears the noise.

We’re grateful to have adjustments in place for minimising work given and extending his time to do it at school; but when he’s exhausted, not completing his homework will only get harder for him when he gets to high school. Also, as his parents, we run the gauntlet as being perceived as in the wrong, when we allow him to rest.

We did not put him through NAPLAN, because he gets stressed and overwhelmed being in a testing scenario. During the practice tests last year, he enjoyed the novelty of the first 15 minutes; started getting worried in the middle 15 minutes; and was so distressed in the last 15 minutes he was disruptive for the other children in his class. He could see other children answering questions around him that he either didn’t know the answers to, or had no concept to work from. With ADHD, he was also getting frustrated at having to answer similar questions repeatedly.

When A arrived in Grade 4 to [this school], (term 2 2021), he was met with a teacher that gave all the children flash cards in his classroom, if they needed a movement, meal, stretch, quiet or whatever break – they were able to pass a card to him. No questions asked. Consequently, the children felt listened to and understood, all of them were able to relax and learn into their learning. Each of the classroom areas have their own little library, a communal area and a ‘donut’ room which is quiet, relaxing and filled with cushions.

In Grade 5 and 6, A has had the same teacher, she also allows the children to take breaks when required. In this last year of his primary school, instead of being excused to the quiet room, the children are expected to manage themselves in the classroom. Upskilling them gently to manage themselves when they get to high school.

We continue to be grateful for the teachers and staff at his current school. This is 180° away from A’s Grade 2 teacher’s attitude. Not least because he ‘didn’t believe in ADHD’. We met with this teacher before term 1 to open a dialogue, take him through A’s diagnosis, and how to manage A’s overwhelm, as he was beginning to recognise his limitations compared to his peers.

This teacher would manage the children in his class only by punitive measures; as an example, sending them out to litter-pick on break times. We had a phone call home from him on the first day of term 1, saying he found A obstructive, rude, and defiant, he was requesting a meeting to discuss his behaviour. When we tried to explain that our son was shutting down due to overwhelm, that he was not being disrespectful or disengaged, we were told that it was his classroom, and he would manage it how he saw fit.

A sees a psychologist fortnightly. Just last month as a session, he mentioned he was sad about something at school, that had reminded him of, “When I was in Mr X’s class”.

We have to fight every step of the way to find support for A. Even with NDIS funding theoretically meaning that we do not need a referral to access allied health, we still rely on a spot becoming vacant from wait lists. I called around paediatrician, speech pathology and occupational therapy clinics weekly from our arrival in Ballarat in March 2022. It took 2 years to find a paediatrician who had room to see us, meanwhile we relied on our paediatrician in Eltham to support the family through telehealth. When we’d found the paediatrician, I had to pay to see our GP for a referral for A. We were booked into a speech pathologist in term 2 of this year, again I had to get a referral from our GP to meet with them. We’ve still not found an occupational therapist. These referrals only last 12 months.

The NDIS Plan we have is self-managed. However, the support budgets are ring-fenced, so if I don’t select the correct line code, a claim is rejected. We do not get a notification of it being rejected; we just notice we’re short in our bank. I must log in again and view payment requests to see what’s going on.

To make matters more confusing, when you claim, each of the five support categories have the same number next to them, including two support categories that aren’t in A’s plan. Despite not being able to access allied health support for over two years; the money we had in the plan was absorbed into a new plan in November 2022, not rolled over.

We need to purchase an iPad for A to assist with his reading and writing, with access to talk-to-type programs and has books read to him. This has been recommended by his teacher, his psychologist, the education psychologist, and his speech pathologist twice this year. However, as we used his $500 budget line for consumables already, the purchasing of it has not happened.

I put the same request in again late last week, I’m hoping this time I can convince someone at the NDIA that this is a requirement for A. That they will release some of the money from his support services budget line, money that we’re not using as we can’t find all the therapists he needs. Instead of the NDIA providing what we ask for, we’re going backwards and forwards justifying what we’re asking for. We’re doing all we can to prepare him for transitioning to high school, but the one tool he needs to unlock his world and assist him has been refused. There is currently over $5,000 to ‘improve his daily living’ sitting there that I can’t claim against, because the iPad is considered a consumable item. I could put a bill in for 10 sessions of a therapy to release the funds to buy the iPad. Then if I am audited, I could be prosecuted for fraud.

The ADHD gap for A is growing wider, when early intervention demonstrates it costs society less long-term in support and funding. A is capable of being a bright and engaged part of society, but how the school system is set up is not suitable for neurodiverse children. If children don’t fit into the standard box of sit down, be quiet, learn facts, regurgitate them in exams, they’re not going to succeed.

A loves building models with his dad, he’s won competitions for the dioramas he’s built from kits. He makes resin trays for family and friends. He goes down YouTube worm holes like every other 11-year-old, in some respects, he’s perfectly normal. But he’s already showing signs of anxiety and depression, not understanding why when he talks to people he’s articulate, empathetic, hilarious, kind-hearted and quick-witted. But when sits down to write, he struggles. It’s physically harder for him to write because he will get into an overwhelm or frustration ‘holding pattern’, knowing that what he wants to say, but his brain goes quicker than his fingers can keep up. The NDIA wouldn’t release his funds to support him. The measures he’s held against at school do not allow for children who see and move through the world differently.

The past seven years of advocating for A lead to me pursuing a diagnosis for myself. I was tested in February 2023, diagnosed in March and only found a psychiatrist to potentially prescribe me medication in May. It’s now June, I’m still waiting on the medication being prescribed.

There is no practice in Ballarat that would meet me after the independent testing I’d had done. In total, I sent over 20 email requests to different practices. Some didn’t bother to reply, some told me there was no room, but mostly I was told they would not accept independent ADHD diagnosis; they all wanted to re-test me from their rooms. This is ridiculous, when I spent over $1,000 and it took two days to complete. It is not just a waste of money for patients, but is putting more strain on an already exhausted system and people.

I am now seeing a psychiatrist in NSW, via telehealth, that found online. But only after all the paperwork I’d sent to the psychiatrist had been reviewed, was I accepted into their practice. I then had to pay to see my GP for to get a referral, as you can’t self-refer for ADHD. This paperwork was sent off, but a month later, I then had to pay my GP again to get a physical completed; despite me giving access to my entire medical history to the psychiatrist.

I’ve been labelled erratic, inconsistent, flighty, temperamental, irrational or lazy for my entire life. For over 40 years I’ve struggled to fulfil or fit into what has been expected of me, often forcing myself to push through when I should have rested. I’ve been misdiagnosed with depression, anxiety, PTSD, Body Dysmorphia, suicidal ideation. It is soul-destroying to discover what you thought were your personality traits, are actually diagnostic markers. When you couldn’t find explanations to why you would feel so adrift, but couldn’t articulate why. Or not to be able to ‘cope’ with life as well as you should be able to, from one day to another. Why you would consistently fail to meet expectations of yourself, or others, including employers.

I do not want this for our son. Yet, the past seven years have shown me that despite his diagnosis, he will be left behind. The support systems we rely on are so fractured and disparate, no agency talks to another agency – they rely on the parents advocating for their children. My husband and I both work full time, but we still can’t afford all the supports for A, we rely on the NDIS to support us to support our son.

We cannot afford for his fortnightly visits to a psychologist. We cannot afford his speech pathology. If we ever find an occupational therapist, we cannot afford to pay for that either. Our NDIS plan is just enough to cover these therapies for the year. We both work full time in the Victorian Public Sector; what about the families in Australia that are working three or four jobs to make ends meet? You are not going to hear from them, because they’re just about scraping through.

To complete the submission to this Inquiry, I tried to calculate how much it has cost us to date to get a diagnosis and support. When I reached $30,000 in doctors and testing fees, I stopped counting. Not least because we’ve paid for the same tests three times now. His prescription costs us around $384 a year. We’ve changed our diet as a family, cooking as much as we can from scratch and avoiding pre-packaged food. Like many families we’re seeing grocery bills get more expensive each time we shop. We also spend nearly $200 a month on supplements; a specific Omega compound, with a higher DHA than we can find on the high street, Ashwagandha, Rhodiola, L-Tyrosine and Melatonin. This is paying off as he forgot his medication last week and coped at school instead of having a meltdown, but it all adds up.

I would like to meet the people at the NDIA who reject claims for support or equipment as too expensive. Instead, please start accepting that therapists and specialists who are more qualified and know the clients they’ve assessed, do understand what their clients need! The iPad we want to get for A to assist him is around $700. I have been working on this submission off and on for a month. I’ve spent more than $700 of my time reviewing our paperwork, researching this submission and writing it.

Thank you for reading.