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The push to add ADHD to the NDIS

When Australian comedian, Em Rusciano, took to the stage at a recent National Press Club gathering, she shone a spotlight on one of the most talked about topics in disability circles – Attention Deficit Hyperactivity Disorder, better known as ADHD.

In her address, delivered in partnership with Women in Media, Rusciano – also a writer, singer and media presenter – talked as one of the surging number of Australian women, and those assigned female at birth, who’ve been diagnosed with ADHD in recent times.

Since the onset of the COVID-19 pandemic, more Australians than ever are being prescribed ADHD medication, and there’s a growing call to add ADHD to the National Disability Insurance Scheme (NDIS).

The groundswell of support for its inclusion in the Scheme has drawn the attention of the Minister for the NDIS, Bill Shorten. Although the matter was not progressed in the recent budget cycle, a conversation highlighting the impact of ADHD and the need for better access to diagnosis and support has been opened.

What is ADHD?

ADHD is a neurobiological developmental disorder affecting approximately one in every 20 Australians (Disability Support Guide, 2022). ADHD can present as inattentive, impulsive or hyperactive behaviour. It may be linked to other co-occurring conditions, like autism, and is frequently under-diagnosed and misunderstood – which is what Em Rusciano’s recent address to the National Press Club brought to light.

Rusciano discovered she had ADHD when she found herself exhausted and burnt out from the pandemic, and seemingly unable to bounce back. A diagnosis of ADHD was later confirmed.

“I have combination type ADHD – hyperactive and inattentive – (meaning) really fast brain, live in a dream world a lot of the time," she told the audience.

“My biggest issue is, I struggle with executive function.

“The executive function branch of a brain resides in your frontal lobe and is in charge of paying attention, transitioning between tasks, time management, planning, organising, remembering things and not saying weird sh*t out loud that offends people.

“When your executive function is dysfunctional, your ability to gather information and organise it is akin to trying to herd a group of drunk, elderly cats through an obstacle course.

“It's also nearly impossible to adapt your behaviour to what your surroundings require.”

The Disability Support Guide has a more textbook explanation of ADHD, which it says 'typically presents in young children, impacting a person’s ability to self-regulate their words, behaviour, emotions and thoughts’.

It also explains that girls and women (and those assigned female at birth) often display less obvious ADHD traits compared to those of boys and men and are therefore underdiagnosed as a cohort.

Last month, ABC News interviewed Dr Maddi Derrick, a clinical psychologist with ADHD, and the director of an ADHD specialty clinic in Hobart, about ADHD facts and myths.

"Without getting support, without understanding their own brains, (ADHD) affects everything – work, study, friendships, intimate relationships, relationships with family, physical health – it’s incredibly pervasive," she said.

"It is not like mental health that can come and go. It's invasive. It's with someone from very early in their life and sets certain trajectories. ADHD affects quality of life in every single way."

Dr Derrick’s comments were echoed in Rusciano’s National Press Club address.

"If only people could see what went on in my head. People are very good at masking. It's why we're exhausted all the time," she said.

Rusciano explained that ‘women and assigned female at birth people with undiagnosed ADHD experience depression and anxiety at a higher rate than the rest of the population because of the shame that consumes them when they can't keep up with what society expects of them’.

She also pointed out that ‘some experts believe that by the age of 10, kids with ADHD will have absorbed about 20,000 more negative messages about themselves than their neurotypical peers’.

ADHD and the NDIS

According to data from the Pharmaceutical Benefits Scheme (PBS), more than 1.5 million Australians were prescribed medication to treat ADHD in the 2020-21 financial year.

ADHD is recognised as a disability under the 1992 Disability Discrimination Act, yet it’s not a primary diagnosis eligible for NDIS funding. This means that unless a person has another disability – a primary disability – ADHD is not currently considered a diagnosis eligible for funding by the National Disability Insurance Agency.

Recent discussions have brought to the fore issues about how eligibility for the NDIS is determined, and the view from many is that it should be based on an individual’s strengths, needs and functional capacity, rather than their specific disability.

For those seeking guidance about Scheme eligibility, the NDIS has made available on its website a list of diagnoses that are likely to meet requirements. A consequence of the list is that it shifts the focus from a person's support needs to their diagnosis.

According to an article written by Angela Byron – non-executive director of ADHD Australia – ‘figures show that ADHD can lead to disability for up to one in 20 Australians’, and as a community, we must work together to advocate for its inclusion to achieve greater access to treatment and support for those who need it.

“While for many Australians ADHD can be effectively managed through early intervention, accommodation in education and the workplace, psychological treatment and medication, we acknowledge that all diagnosis and treatment is not without cost to both the individual and the economy,” she said.

Byron said ‘we must not lose sight of the fact that some individuals have such severe ADHD that it impairs their ability to function and participate on a daily basis’ – something Minister Shorten will no doubt be considering when weighing up the inclusion of ADHD in the NDIS.

According to the ADHD Foundation, currently there are two available routes to access support through the NDIS if you have ADHD, which the Foundation explains here. For more information about ADHD and diagnosis, visit the Foundation’s website.

My Spirited Child also offers information, strategies and support to parents, carers and educators of neurodivergent children, as well as to adults who are neurodivergent.

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