Submission 2089

I am writing this submission as both a Support Coordinator working within the NDIS and as a mother of three children with disability.

While I understand the need to ensure the long-term sustainability of the NDIS, I am concerned that some of the proposed changes may have unintended consequences for families living in regional and rural Australia.

My lived experience has shown me that many assumptions made about family capacity and access to informal supports do not reflect the reality faced by families like mine.

As a parent, I have been required to significantly reduce my employment opportunities and work from home because there are limited disability-specific services available in my area. There is no appropriate vocational care available for my children and, when supports have been available, I have often experienced difficulties finding workers with the skills, experience and capacity required to safely support children with complex needs.

This has resulted in significant isolation for both myself and my family.

I frequently hear discussions suggesting that parents should provide additional support where funded services are unavailable. I ask the Committee to consider how this expectation impacts families financially, emotionally and socially.

Families still need to pay rent or mortgages, buy food, pay utilities and meet everyday living costs. Parents are often expected to remain in the workforce while simultaneously filling gaps left by service shortages, workforce shortages and inadequate systems.

In rural communities, these expectations can become impossible.

There appears to be an increasing assumption that parents should absorb the impact of disability support gaps. However, there is often little discussion about where the responsibility of the NDIS ends and where broader community, government and systemic responsibilities begin.

Submission 2089

When supports are unavailable because there are no providers, no trained staff, long waitlists or inadequate services, this should not become the sole responsibility of families.

I am also concerned about the ongoing reduction of respite and support options available to families caring for children with significant support needs.

Many parents provide care 24 hours a day, seven days a week.

For many years I have had little to no opportunity for genuine respite.

The reality for many families is chronic exhaustion, social isolation, financial stress and declining mental health.

Respite is not a luxury.

For many families it is essential in preventing carer burnout, family breakdown, mental health deterioration and crisis presentations.

I ask the Committee to consider how proposed changes to reasonable and necessary supports, access pathways and funding decisions may further impact families already struggling to access support.

As a Support Coordinator, I also regularly support participants and families experiencing similar challenges.

Across regional Victoria and New South Wales I have observed:

• Significant shortages of disability support workers.

Submission 2089

• Limited access to experienced and appropriately trained staff.

• Long waiting periods for allied health services.

• Families forced to leave employment or reduce working hours due to caring responsibilities.

• Parents experiencing burnout while attempting to bridge gaps in service systems.

• Participants being disadvantaged due to their rural location.

The NDIS was designed to support people with disability to participate in their communities and improve quality of life.

For many rural families, the challenge is not simply obtaining funding. The challenge is accessing actual services capable of delivering the support.

I respectfully ask the Committee to ensure that the implementation of this Bill does not increase the burden on families who are already carrying significant caring responsibilities.

I recommend that the Committee:

1. Recognise the unique challenges faced by rural and regional families.

2. Protect access to respite and carer-sustaining supports.

3. Ensure families are not disadvantaged where services are unavailable.

4. Consider workforce shortages when determining participant needs and funding.

5. Improve investment in regional service delivery and workforce development.

6. Ensure participants are not denied supports because another service system is theoretically responsible but unable to provide timely support.

7. Recognise the economic and social impact on parents who are forced to reduce employment due to caring responsibilities.

Submission 2089

Thank you for considering my submission and for the opportunity to share both my professional and lived experience.

Support Coordinator

Mother of Three Children with Disability

Regional Victoria / New South Wales