Concerns regarding access to supports for people with Parkinson's Disease (Participant experience)

Submission 357

Submission to the Senate Inquiry into the

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitted by: Annette Kollowski

Email:

Date: 22 May 2026

I support efforts to improve the long-term sustainability, integrity, and fairness of the National Disability Insurance Scheme (NDIS). However, we are deeply concerned that aspects of the proposed legislation may unintentionally reduce access to essential supports for people living with progressive neurological conditions, such as Parkinson’s Disease of which I have had for the past 30 years.

People living with Parkinson’s Disease, often experience fluctuating symptoms, increasing disability over time, cognitive impacts, mental health challenges, fatigue, and reduced workforce participation. Many rely on flexible, preventative, and community-based supports to remain independent and connected to society.

I believe the proposed reforms risk creating additional barriers, uncertainty, and administrative burden for participants with complex neurological conditions.

Key Concerns

1. Narrower Definitions of NDIS Supports I am greatly concerned that proposed restrictions around what constitutes an NDIS support may disproportionately affect people living with neurological conditions whose needs are variable and progressive.

Supports such as:

 physiotherapy,  exercise physiology,  speech therapy,  community participation,  psychological support,  cognitive supports,  and assistive technology

are essential in maintaining independence and preventing deterioration.

Submission 357

Restricting access to preventative and maintenance supports may lead to:

 increased hospitalisation,  reduced workforce participation,  greater carer stress,  earlier residential care,  and poorer long-term outcomes.

Preventative supports are often significantly more cost-effective than crisis intervention.

2. Increased Reassessments and Functional

Assessments

Parkinson’s Disease is progressive and degenerative. While symptoms may fluctuate day to day, the condition itself does not improve over time.

I am greatly concerned that increased reassessment requirements and standardised functional assessments may fail to adequately capture:

 fluctuating capacity,  fatigue,  medication cycling,  cognitive changes,  and invisible disability.

Participants with neurological conditions may experience significant distress and administrative burden through repeated reassessment processes that do not recognise the permanent nature of their disability.

3. Concerns Regarding “Exhaustion of

Treatment Options”

Reports suggesting stricter access requirements based on whether “all appropriate treatment options” have been exhausted are particularly concerning for people with Parkinson’s Disease.

Parkinson’s Disease currently has no cure.

Many treatments aim only to manage symptoms rather than reverse disability. Participants should not be forced into repeated treatment trials or unrealistic medical expectations in order to access supports necessary for daily living and participation.

Submission 357

4. Impact on Mental Health and Social

Isolation

Social isolation is a major issue for people living with Parkinson’s.

Community participation supports often:

 reduce isolation,  support mental health,  maintain confidence,  preserve relationships,  and reduce long-term health decline.

I am greatly concerned that tighter funding interpretations may unintentionally undermine these important preventative supports.

5. Lack of Meaningful Consultation Many people with disability and community organisations feel reforms are proceeding too quickly without adequate consultation.

People with lived experience must remain central to NDIS reform.

I encourage Parliament to ensure ongoing consultation with:

 neurological advocacy groups,  disability representative organisations,  carers,  allied health professionals,  and participants themselves.

Recommendations

I respectfully recommend that the Senate Committee:

1. Ensure preventative and maintenance supports remain clearly accessible under the NDIS.

2. Recognise the progressive nature of neurological conditions when designing reassessment and planning processes.

3. Avoid eligibility criteria that require participants to exhaust all treatment options before accessing support.

4. Protect participant choice and control within planning and funding arrangements.

5. Ensure all future reforms are co-designed with people with disability and representative organisations.

Submission 357

6. Conduct further consultation before implementing major assessment and planning changes.

Conclusion

I support a NDIS that is sustainable, fair, and effective. However, sustainability must not come at the expense of vulnerable Australians living with progressive neurological conditions.

People living with Parkinson’s Disease require flexible, person-centred supports that recognise both the complexity and progression of their condition.

I respectfully urge the Committee to carefully consider the potential unintended consequences of these reforms and to strengthen safeguards for participants with neurological disabilities.

Submitted respectfully,