A landmark bipartisan Senate inquiry into ADHD has concluded and handed down its report this week, including 15 recommendations to change diagnosis and treatment, and improve the lives of those who live with the condition.
In more than 700 submissions and three public hearings, the inquiry heard of the significant challenges facing the more than one million Australians who are believed to have ADHD.
So what are those challenges, what has the inquiry recommended, and what's actually going to change? Let's take a look.
How much does ADHD assessment and diagnosis cost in Australia?
One of the main issues identified by the Senate inquiry was the difficulty in getting assessed and diagnosed with ADHD, including the "exorbitant cost" of the process.
It heard of patients paying $500, $700 and $950 for diagnoses or psychiatrist consultations, and the ADHD Foundation said it knew of some health professionals charging up to $5000 for assessments.
That, in turn, is stopping some people from seeking a diagnosis and forcing families to choose which of their children to get assessed.
"We're looking at families that are looking beyond $20,000 … they're having to make decisions on which member of the family will have the treatment," ADHD WA told the inquiry.
"We have stories of parents, when they've been able to access the medication, having to share the medication, which obviously is not best practice, between the family members."
Part of the problem is "almost all" ADHD diagnosis for adults is done through the private rather than public sector.
"As we see in the private system, there are no regulations around costings at the moment," the ADHD Foundation said.
"As a consequence, the private operators are charging whatever they feel they can get away with, which is unacceptable."
Is ADHD covered under the NDIS?
The Senate committee said there is "widespread confusion" about the eligibility for the NDIS of people who have ADHD.
While the condition is listed under the Disability Discrimination Act 1992, it isn't listed on the NDIS List A or B access lists, and several groups submitted that it isn't covered by the scheme.
But a health department submission showed there are people on the scheme for ADHD, although it's a tiny proportion of the total program; of the almost 600,000 NDIS participants, 188 (148 children and 48 adults) have ADHD listed as their primary condition.
The NDIA explained how this happens when ADHD isn't on the access lists.
"The (NDIS) act itself doesn't list disabilities," it told the inquiry.
"We have some lists that help us guide decision-making... but you don't need to be on any of those lists, per se, to (get access to) the scheme.
"There are a whole range of impairments and disabilities that don't appear on any of those lists, but we still assess a person's functional ability and permanency to access the scheme.
"ADHD isn't on any of those lists – that's correct – but that doesn't preclude anyone with ADHD testing access to the scheme."
What else did the inquiry hear about ADHD?
Plenty. In addition to the cost barriers, the inquiry heard of significant wait times for assessment – and that early diagnosis can be life-changing.
"(It) highlighted the desperate lack of support in our communities for people with ADHD seeking diagnosis and treatment," Dr Alison Poulton, chief investigator of 'A Pilot Study of Integrated Care for ADHD', said.
She added that "the lack of information and qualified professionals who can diagnose and treat it has reached crisis point".
It heard there are other issues contributing to poor patient experiences, including insufficient information, fragmented and expensive care, and inconsistent medicine prescribing.
It was also told of stigma around ADHD diagnosis and medication, and significant challenges facing girls, women, and gender-diverse and First Nations people who want to access support services, as well as a lack of services in rural and regional areas.
All up, it estimated the economic cost of ADHD at $20.42 billion.
It also heard of the frustration and grief that can come with a late diagnosis, as well as the benefits the diagnosis provides.
"Receiving an ADHD diagnosis has been life-changing," one submitter said.
"However, it has also made me reflect on the missed opportunities and how different my life could have been if I had received a diagnosis as a teenager.
"It is my hope that through this inquiry, more girls won't be misdiagnosed and experience the same struggles I did.
"Since my diagnosis I have been able to recommence study, and finally see a life that I didn't believe was possible."
So what has the Senate inquiry recommended?
The Senate inquiry has made 15 recommendations, variously directed at the federal government, Commonwealth, state and territories, NDIA and Department of Social Services.
The recommendations are aimed at making ADHD assessment, diagnosis and treatment more accessible and affordable, raising awareness of and addressing stigma, improving care, and better coordinating the nationwide approach to the condition.
You can read the recommendations in full below.
Will anything actually change as a result of the recommendations?
That's the $20 billion question, but at the moment we don't have an answer for it.
The government has three months – so until February 6, 2024 – to table its response to the report, but says it is too early to commit to adopting them or not, but Health Minister Mark Butler said he will consider the report "very closely".
"It is an important landmark Inquiry that we take very seriously," he said.
"We'll be looking through those recommendations over time."
A number of experts have already encouraged the government to implement the recommendations.
"A landmark moment where the voices of both Australians with a lived experience and professionals involved in care have been heard," professor Mark Bellgrove, director at Australian ADHD group AADPA, said.
"The 15 recommendations are appropriate, practical and formulated with due consideration to both the evidence and the needs of consumers."
Professor Dave Coghill, president of the Australian ADHD Professionals Association, agrees.
"The 15 recommendations made by the committee will, if implemented by the government go a long way towards improving the lives of those with ADHD," he said.
9news.com.au has contacted Health Minister Mark Butler for comment.
You can read the full Senate committee report on Assessment and support services for people with ADHD here.
Free support is available from the ADHD National Helpline at 1300 39 39 19.
