Do I need a diagnosis to get access to the NDIS?

We get asked this question a lot.

From a legal perspective, the answer is “no”. 

The Federal Court of Australia – most recently in an important case called National Disability Insurance Agency v Davis [2022] FCA 102 (the Davis case) – has been very clear:

• The NDIS Act does not focus on the name of a person’s disability, nor the diagnosis given to a person. 
• The NDIS Act is not concerned with what caused a person’s disability. 

Instead, the NDIS Act requires the National Disability Insurance Agency (NDIA) to look at impairments experienced by a person that may require ‘supports’ so that the person can participate in personal and community life. Anyone who meets the access criteria in the NDIS Act can be a participant – regardless of diagnosis, and regardless of whether their disability came about by birth, disease, injury or accident.

So why is everyone so focused on labels and diagnoses? 

An important question. To answer it, we’ll look, first, at early intervention; and then NDIS access, generally.

1. NDIS access for children under 7 years of age

In a previous article, we looked in detail at some practical issues facing families when trying to access early intervention supports funded by the NDIS. As a matter of law, it’s clear that you don’t need a formal diagnosis for your young child to access supports from the NDIS, a fact acknowledged by the NDIA.

However:

• In clinical practice, we’ve observed that families who can afford to pay for formal assessments confirming certain types of diagnoses seem to have a much easier time accessing support from the NDIS than others. More specifically, the system seems to favour:
  • families who live in big cities with access to health professionals;
  • educated parents/carers who understand ‘the system’, can advocate for a diagnosis when interacting with health professionals;
  • wealthy parents/carers who can afford to pay one or more private medical professionals to write formal reports and/or who have the resources to challenge NDIA decisions (e.g. before the Administrative Appeals Tribunal or Federal Court of Australia); and 
  • people who speak English as their first language. 

This has contributed to what some commentators call a ‘two-tier access system’. It’s fundamentally unfair. The NDIA and the responsible Minister are both aware of the problem and are trying to fix it. But it’s the reality right now. 

• NDIS guidelines expressly privilege some types of diagnoses for determining access. For example, the NDIA has published:
  • a list of conditions that they deem are likely to result in a permanent impairment (an access requirement), including intellectual disability and Level 2 autism (Requiring substantial support) and Level 3 autism (Requiring very substantial report); and
  • a list of conditions that do not require further assessment for accessing the NDIS for early intervention for children under 7 years, including Global Developmental Delay. 

Good intentions, weird incentives, and unfair outcomes 

The NDIS guidelines and lists were no doubt intended to save families of children with significant, lifetime disabilities from having to jump through administrative hoops to qualify for clearly-warranted help. But, in practice, the lists have had unintended consequences. Inconsistently with the purpose of the NDIS Act:

• many families, planners, providers, and stakeholders focus their time, money, and energy on medical assessments and diagnoses instead of on the functional needs and participation of children with developmental delays and disabilities;
• the system creates a strong incentive for families to seek specific diagnoses of conditions that result in easier or automatic access to the NDIS, even if this involves some ‘diagnosis shopping’; and
• some children who meet the legal requirements to become NDIS participants miss out on support because of bad advice and mistaken beliefs that they don’t have the ‘right’ diagnosis or label and are therefore ineligible.

Anecdotally, we’ve heard reports of some parents consulting up to five paediatricians to obtain a diagnosis of Level 2 or Level 3 autism for their child. This type of behaviour:

• is not an option available to most families for financial reasons;
• is a terrible waste of limited healthcare system resources in a system beset with long waitlists for paediatricians and other health professionals; and 
• only makes sense in the context of the preferential access to NDIS funding that comes with the diagnosis.

2. NDIS access for children aged 7 years or older, teenagers, young adults, and adults

A. ‘Does my diagnosis qualify for NDIS access?’ is the wrong question

The idea that diagnosis should determine access to the NDIS is misguided. It’s legally incorrect. But it continues to dominate mainstream and social media commentary on the NDIS.

NDIS Guidelines have contributed to the confusion. The NDIA’s list of conditions that it deems likely to meet the disability requirements for access to the NDIS includes moderate, severe and profound intellectual disability, and Level 2 and Level 3 autism. Of course, most people with these conditions and/or the other conditions on the list should be entitled to NDIS support. But it’s understandable that people with other diagnoses and conditions would like to be added to ‘the list’.

Recently, we’ve seen a public debate about whether adults with ADHD should be able to access the NDIS. We’ve also seen well-intentioned disability and other advocates fighting for people with ‘their diagnosis’ to be ‘granted access’ to the NDIS, including advocates for adults with language disorders. Again, this is understandable in the current system – especially given that intellectual disability, autism, ADHD and language disorders are all subtypes of neurodevelopmental disorders (NDDs) that are known to have negative effects on people’s participation and functioning. It seems arbitrary to include some NDDs and not others – particularly in cases where they lead to similar functional impairments. 

The diagnosis debate is understandable, but harmful to the NDIS and people with disabilities. All the ‘noise’ about diagnosis-based access feeds into the unhelpful narrative about NDIS cost ‘blowouts’ and ‘unsustainability’. It obscures the great news about how transformative the NDIS is for many participants. It confuses potential participants, providers and taxpayers about who is entitled to access the NDIS, and why.

To counter some of this noise and confusion, let’s take look at the legal tests for access: 

B. NDIS access basics – the three requirements

To become an NDIS participant as a person aged 7 years or older, you need to meet the “access criteria” set out in the National Disability Insurance Scheme Act 2013 (Cth) (the NDIS Act).

Section 21 of the NDIS Act sets out the main rules. There are three kinds of requirements for access to the NDIS:

• Age requirements. You need to be under 65 years of age when you make an access request to become a participant (see section 22); and
• Residence requirements. You need to:
  • reside in Australia; AND 
  • be an Australian citizen, a holder of a permanent visa, OR a protected special category visa holder (section 23); and 
• Disability requirements. These are set out in section 24, which is sometimes referred to as the “threshold provision”.

C. Disability requirements: commonly disputed issues

Often, the main issue for potential participants is whether they meet the disability requirements. 

The disability requirements are complicated, cumulative, and include a number of separate requirements that must be met before a person can become an NDIS participant (participant). You can read them in full here.

Common issues in disputes between the NDIA and applicants include whether the person:

• has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory, or physical impairments;
• has impairments that are likely to be “permanent”;
• has impairments that result in “substantially reduced functional capacity” to undertake one or more of the six activities set out in section 24(1)(c) of the Act, namely:
  • communication;
  • social interaction;
  • learning;
  • mobility;
  • self-care; and/or
  • self-management; 
• has impairments that affect the person’s capacity for social or economic participation; and
• is likely to require support from the NDIS for the person’s lifetime.

D. What do the Courts say about access to the NDIS? 

In the Davis case, Justice Debra Mortimer considered the disability requirements in detail^*. She made several important observations and comments about the disability requirements and NDIS access, generally. These comments are helpful for understanding who should get access to the NDIS, and why. 

Our key takeaways, paraphrased from Davis, are as follows:

• The NDIS is focused on assisting people with disability to live with dignity, with as much autonomy as possible, and with the ability to enjoy access to community and social engagement commensurate with people who do not live with disabilities. 

• The NDIS is not means tested. Access doesn’t depend on how much money you or your family have (or don’t have).

• Not everyone with a disability gets access to the NDIS. 
  • The scheme is directed at providing lifelong support to people with enduring needs.
  • Access to the NDIS is reserved for a subcategory of people with disabilities and is determined by the access criteria. 
  • There are many people with disabilities who will not qualify as participants of the NDIS. This was a conscious policy decision, not an accident.

• The intention of the NDIS is that, once a person meets the access requirements, the person will (generally) remain supported through their lifetime.

• The link between “disability” and “impairment” is not explained in the NDIS Act. The disability requirements revolve around the severity and permanency of the effects of impairments experienced by a person to justify the funding of “reasonable and necessary supports” (as later assessed under the NDIS Act).

• The concept of “impairment” enables the assessment of:
  • the severity and permanency of the person’s condition, and
  • the effects of that condition through:
    • evidence of the person; and
    • medical and clinical evidence.

• The assessment of the severity and permanency of the person’s condition and its effects should focus on the effects of impairments on a person’s functioning. The assessment must be functional, practical and detailed. The assessment must be focused on what a person can and cannot do.

• In clinical practice and litigation, people sometimes use the terms “impairment”, “disability”, “condition” and “diagnosis” interchangeably. But, for the purposes of the disability requirements, these terms are not synonyms. For example:
  • the focus of the disability requirements is whether a person has one or more impairments, and whether those impairments are permanent (i.e. enduring); and
  • whether a person’s disability is attributable to those impairments.

• The NDIS Act does not focus on the name of a person’s disability, nor the diagnosis given to a person. Instead, the Act focuses on identifying the impairments experienced by a person that may require supports so that the person can participate in all aspects of personal and community life. 

• The term “permanent” is not defined in the NDIS Act. However, there are “access rules” that have been made for the purposes of the NDIS Act called the National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (Cth) (the Rules). Rules 5.4-5.7 provide as follows:

5.4 An impairment is, or is likely to be, permanent (see paragraph 5.l(b)) only if there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment. 

5.5 An impairment may be permanent notwithstanding that the severity of its impact on the functional capacity of the person may fluctuate or there are prospects that the severity of the impact of the impairment on the person’s functional capacity, including their psychosocial functioning, may improve. 

5.6 An impairment may require medical treatment and review before a determination can be made about whether the impairment is permanent or likely to be permanent. The impairment is, or is likely to be, permanent only if the impairment does not require further medical treatment or review in order for its permanency or likely permanency to be demonstrated (even though the impairment may continue to be treated and reviewed after this has been demonstrated). 

5.7 If an impairment is of a degenerative nature, the impairment is, or is likely to be, permanent if medical or other treatment would not, or would be unlikely to, improve the condition. 

• The term “permanent”, for the purposes of the disability requirements, means the impairment or impairments are “enduring” or of an “enduring nature”. It does not mean “irreversible”. It does not mean “cannot be improved”, e.g. with therapy or medicine. The effects of a permanent impairment may fluctuate. 

• In other words, the question for the NDIA is whether the impairment(s) experienced by the person has or have an enduring quality so as to require supports funded under the NDIS on an ongoing basis.

• The rules about whether an impairment results in substantially reduced functional capacity of the person to undertake one or more of the relevant activities (communication, social interaction, learning, mobility, self-care and/or self-management) are set out in Rule 5.8: 

5.8 An impairment results in substantially reduced functional capacity of a person to undertake one or more of the relevant activities-communication, social interaction, learning, mobility, self-care, self-management… if its result is that:

(a) the person is unable to participate effectively or completely in the activity, or to perform tasks or actions required to undertake or participate effectively or completely in the activity, without assistive technology, equipment ( other than commonly used items such as glasses) or home modifications; or

(b) the person usually requires assistance (including physical assistance, guidance, supervision or prompting) from other people to participate in the activity or to perform tasks or actions required to undertake or participate in the activity; or

(c) the person is unable to participate in the activity or to perform tasks or actions required to undertake or participate in the activity, even with assistive technology, equipment, home modifications or assistance from another person.

Bottom line

Not everyone is entitled to access the NDIS. This is a feature of the scheme, not a bug. 

Access rules are essential for the NDIS to work fairly and as intended. But the rules and processes must be transparent, fair, and applied consistently.  

The current system includes incentives that are not aligned with the NDIS Act and its policy objectives, and lead to unfair outcomes. Access to the NDIS should not depend on where you live, your family’s cultural and language background or socioeconomic status, your ability to advocate for your rights, or your capacity to understand the rules and to navigate ‘the system’. 

Similarly, access should not depend on your diagnosis or label. Instead, access should be assessed by reference to whether you have a disability attributable to enduring impairments that substantially reduce your functional capacity, and capacity for social and economic participation. 

Fair access to the NDIS for people with disabilities is far too important an issue for us to get side-tracked on debates about medical diagnoses and labels. As Justice Mortimer noted in Davis, questions about access – and about the operation of the NDIS Act generally – should be approached with a reasonable degree of common sense, given the purpose of the NDIS, and the fact that its operations affect people, families and carers already facing great challenges in their daily lives. 

*Justice Mortimer was also the presiding judge in a very important earlier case called Mulligan v NDIA [2015] FCA 544 (Mulligan). Both Davis and Mulligan were appeals from the Administrative Appeals Tribunal (which hears disputes about NDIS access in the first instance).

Disclaimer: we have done our best to ensure that this article is correct as at the date of publication (28 November 2022). It may not reflect any changes to the NDIS Act, NDIS rules or guidelines after the date of publication. The article is intended to provide general information and is not legal advice. Formal legal or other advice should be sought for particular circumstances or for matters arising from this article.

This article also appears in a recent issue of Banter Booster, our weekly round up of the best speech pathology ideas and practice tips for busy speech pathologists, providers, speech pathology students, teachers and other interested readers.

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