What the NDIS amendments could mean for people with young onset Parkinson’s

The NDIS reforms will not happen all at once.

For now, you can continue using your current plan and supports. Some changes will begin in the coming months, while others will be introduced progressively through to 2028.

Importantly, the conversation about early intervention is not over. Parkinson’s Australia continues to advocate for an NDIS that recognises the progressive nature of Parkinson’s and the value of accessing support before significant disability develops.

There is still time to influence policy and implementation as the reforms continue to roll out. Your experiences, stories and evidence help strengthen that advocacy. Together, we can continue to make the case for fair access to early intervention and supports that help people maintain function, independence and participation for as long as possible.

What has changed?

Recent changes to the NDIS Act may affect how people with Parkinson’s access and use NDIS supports. The National Disability Insurance Agency (NDIA) is placing greater emphasis on how your condition affects your day-to-day functioning, rather than relying primarily on a Parkinson’s diagnosis. This means evidence about your mobility, communication, cognition, self-care, fatigue, and ability to manage everyday activities may become increasingly important when applying for the NDIS, seeking early intervention supports, or participating in a plan review. For people with Parkinson’s, particularly those in the earlier stages of the condition, providing clear clinical evidence of both current functional impacts and likely future progression may be more important than ever.

The NDIA is placing greater emphasis on a person’s impairments and functional capacity rather than focusing only on a diagnosis. Functional capacity refers to your ability to carry out everyday activities such as communication, mobility, self-care, self-management, learning, and social interaction.

The legislation also introduced impairment categories. New participants receive information explaining which impairments were used to determine their eligibility for the NDIS. Supports funded by the NDIS must relate to those impairments that meet either the disability or early intervention requirements.

What could this mean if you are applying to the NDIS?

If you have young onset Parkinson’s and are applying for the first time, the NDIA is likely to look closely at:

  • How Parkinson’s affects your day-to-day functioning.
  • Evidence of current difficulties with mobility, communication, cognition, self-care, or self-management.
  • Whether support now could prevent or slow future decline.
  • Whether early intervention is likely to reduce future support needs.

This means medical evidence that only confirms a diagnosis may not be enough. Reports from neurologists and allied health professionals may need to clearly describe how Parkinson’s affects your everyday function and how those impacts are expected to change over time.

What could this mean for early intervention access?

The early intervention pathway under section 25 of the NDIS Act remains available for people with permanent neurological impairments, including progressive conditions such as Parkinson’s. The legislation specifically recognises that people with degenerative conditions may meet the early intervention requirements.

To access the NDIS through early intervention, the NDIA must be satisfied that supports are likely to:

  • Reduce future support needs.
  • Prevent deterioration in functional capacity.
  • Improve functional capacity.
  • Reduce the impact of impairments on everyday functioning.

For people with young onset Parkinson’s, this may strengthen the case for evidence-based interventions that help maintain function, such as physiotherapy, exercise, speech pathology, occupational therapy, and other supports aimed at preserving independence.

However, there is also a potential concern. Some people in the early stages of Parkinson’s may still be working, driving, and managing many daily activities independently. If the NDIA focuses heavily on current functional limitations, some applicants may find it harder to demonstrate eligibility despite having a progressive neurological condition. This makes detailed functional evidence increasingly important.

What might be different during a plan review?

Existing participants may notice greater focus on demonstrating:

  • Ongoing functional impacts (e.g. fatigue, stiffness, sleep or continence issues).
  • Changes in function over time (e.g. dyskinesia, less dexterity).
  • How funded supports relate to the impairments that met access requirements (e.g. balance & mobility maintained through exercise physiology sessions).
  • Evidence that supports are helping maintain (or improve) function (e.g. swallowing and voice maintained through Speech Pathology sessions).

For reviews, it may become more important to provide reports that show measurable changes in areas such as mobility, communication, cognition, self-care, fatigue management, and participation.

Participants should consider keeping records of:

  • Allied health assessments.
  • Functional capacity assessments.
  • Therapy outcomes.
  • Changes in work, home, or community participation.
  • New symptoms affecting daily activities.

Key messages for people with young onset Parkinson’s

  • Your diagnosis alone may carry less weight than the evidence of how Parkinson’s affects your daily life.
  • Functional impact is becoming increasingly important in both access requests and review decisions.
  • Evidence should explain both your current challenges and the likely progression of Parkinson’s and how this relates to the supports your require.
  • Evidence should be objective and clinical, and not have an advocacy tone.
  • Early intervention remains an important pathway for people with progressive neurological conditions.
  • Strong clinical evidence linking supports to the maintenance of function will become increasingly valuable.

Parkinson’s Australia position

Parkinson’s Australia supports an NDIS that recognises the progressive nature of Parkinson’s and the value of early intervention. People should be able to access supports that help maintain independence, participation, and function before significant disability develops. Early intervention should not require people to wait until their condition has substantially worsened before they can access appropriate supports.

Reminder: The NDIS reforms are still being implemented, with changes continuing through to 2028. Parkinson’s Australia will continue advocating for an NDIS that recognises the progressive nature of Parkinson’s and the importance of early intervention. Your experiences, evidence and lived expertise play an important role in shaping that advocacy. There is still time to influence how these reforms are applied, and together we can continue to push for fair access to supports that help people maintain function, independence and participation.

References

National Disability Insurance Agency. (2025). Summary of legislation changes. https://www.ndis.gov.au/ndis-laws/getting-ndis-back-track/summary-legislation-changes.

National Disability Insurance Agency. (2025). What are the early intervention eligibility requirements? https://www.ndis.gov.au/applying/eligibility-requirements/what-are-early-intervention-eligibility-requirements.

National Disability Insurance Scheme Act 2013 (Cth), s 25. Early intervention requirements. https://www5.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s25.html.

Participant newsletter (NDIS)

https://www.ndis.gov.au/ndis-laws/securing-ndis-future-generations

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