Should ADHD be in the NDIS? Yes, but eligibility for disability supports should depend on the person not their diagnosis

Eligibility for the National Disability Insurance Scheme (NDIS) came under scrutiny this week, after NDIS minister Bill Shorten said he was considering whether a diagnosis of attention-defecit hyperactivity disorder (ADHD) should grant automatic eligibility for the NDIS.

The minister since walked back these comments, with a spokesperson explaining “the government currently has no plans to make changes” to this list.

However, these comments have shone a spotlight on how eligibility for the NDIS is determined. It should be based on an individual’s strengths, needs and functional capacity.

What’s the NDIS for?

The NDIS was a landmark reform of Australian disability systems. Previously administered by different systems across states and territories, the NDIS created a joined-up system across Australia.

The NDIS was passed into law in the final months of the Gillard government in 2013. The Act itself remains a visionary and progressive piece of legislation.

A critical element of the Act is its adoption of a “diagnosis agnostic” stance to disability. People would be provided access to the NDIS based on the level of functional impairment they experience, rather than whether or not they have a particular diagnosis.

This is a gold-standard approach to supporting people with disability because it helps tailor supports to the needs and desires of each individual person.

Diagnosis and the NDIS

Despite “diagnosis agnosticism” being a core component of the NDIS Act, this philosophy was lost in the NDIS rollout.

A critical moment was the NDIS’s publication of a list of diagnoses (the “List A”) that are likely to meet the disability requirements for eligibility into the NDIS.

The list was intended to provide guidance about who may be eligible for the NDIS.

However, it also had unintended consequences. The focus became on what diagnosis someone may have, rather than their individual support needs. This was the complete opposite of the intentions in the NDIS Act.

A key example is the diagnosis of autism. An autism diagnosis was included on List A, which signalled children with this diagnosis would receive swifter access to supports through the NDIS.

However, the inclusion of autism on List A also changed the way practitioners diagnosed. There is evidence, for example, that practitioners started diagnosing autism in children more prematurely than they usually would, in order to help those children access support through the NDIS.

Read more: New autism guidelines aim to improve diagnostics and access to services

Currently, 55% of all NDIS participants aged 18 years or younger have a primary diagnosis of autism. Because of the unique aspects of NDIS eligibility, it is difficult to compare this figure with other jurisdictions. However, based on population prevalence figures alone, we would not anticipate that more than half of children eligible for disability supports would have a diagnosis of autism.

This doesn’t mean these children do not have important and urgent support needs. There should also be no blame whatsoever on parents for pursuing all avenues to provide their child the best and fastest support they can receive.

What this does illustrate is how policy decisions within systems such as the NDIS can lead to inequities in access to support that changes family and practitioner behaviours.

What’s the problem with a diagnosis determining eligibility?

In some instances, a diagnosis is a highly precise indicator of functional impairment, such as in the case of permanent blindness. An inability to see will result in clear challenges in almost all aspects of life, and this disability will result in significantly reduced functional capacity.

However, neurodevelopmental conditions, such as autism and ADHD, present quite a different case. Because there is no biological marker for these conditions, diagnosis is based on observation of certain behaviours.

In the case of ADHD, the behaviours include difficulties paying attention (such as finding it hard to concentrate on tasks), being hyperactive (difficulty sitting still), and problems with controlling impulses (saying or doing things before thinking them through).

Read more: I think I have ADHD, how do I get a diagnosis? What might it mean for me?

Importantly, ADHD does not result in the same level of functional impairment for everyone. ADHD behaviours may lead to significant functional impairment for some people but not others.

Similarly, there will be people who do not meet the diagnostic threshold for ADHD (or autism), but who experience significant functional difficulties in day-to-day life.

The inclusion of ADHD on List A would again embed an imprecise indicator of functional impairment within the NDIS architecture, which will further entrench inequity in access. It may also drive changes to family health-seeking behaviour and practitioner diagnostic practices.

What is the solution for determining NDIS eligibility?

For neurodevelopmental conditions such as ADHD, there needs to be a return to the core principles of the NDIS Act.

For eligibility, the question the NDIS must ask is who an individual is – that is, their strengths, challenges and functional capacity – rather than what diagnosis they may have.

Critically, in the context of ADHD, a return to this core principle will not restrict access to the NDIS. Rather, this approach will provide those people with ADHD diagnosis who experience functional impairments better access to the NDIS.

The Labor government has foreshadowed an enquiry into the NDIS. This key issue of eligibility should be among the host of areas this review should examine to ensure equity in access, and help the NDIS fulfil its promise as a truly visionary reform for Australia.

Read more: With a return to Labor government, it's time for an NDIS 'reset'