Submission 1448

Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill

Submitted by: Mother and full-time carer of an NDIS participant

Introduction

My name is and I am the mother and full-time carer of a young daughter with Down syndrome (Trisomy 21). My husband works full time, and together we are also raising our two other children.

Our daughter has been involved with the NDIS since her birth in May 2021. Through the NDIS, she currently receives support including speech therapy, occupational therapy, physiotherapy, hydrotherapy, support workers and assistive technology.

I want to begin by saying that I am incredibly grateful for the support the NDIS has provided our family. These supports have made a genuine and measurable difference in our daughter’s development, independence, communication, social skills and overall quality of life. They have also helped support the mental health and stability of our family as a whole.

At the same time, navigating the NDIS can already be extremely stressful and overwhelming for families. The proposed changes within this Bill create significant concern and uncertainty for families like ours who already rely heavily on these supports every single day.

I ask the Committee to consider the real-life impact these changes may have on participants and families.

The Importance of Early and Ongoing Support

The therapies and supports funded through the NDIS are not “extras” for our daughter. They are essential supports that help her build communication skills, independence, physical strength, confidence and social connection.

Without the NDIS, we would not be able to afford these therapies ourselves. Like many families, we are already balancing the financial pressures of raising children while also managing the additional responsibilities that come with caring for a child with disability.

The support our daughter receives has improved:

• her communication and speech development

Submission 1448

• her independence and daily functioning
• her ability to engage socially and participate in the community
• her physical development
• our family’s stability and mental wellbeing

These supports are helping give her the opportunity to live a fulfilling life and become a valued member of her community.

Concerns About Reductions to Supports and “Reasonable and Necessary” Changes

One of my biggest concerns is the possibility of reduced funding or stricter interpretations of what is considered “reasonable and necessary”.

Families like ours already use funding carefully and responsibly. We rely on every part of the support package our daughter receives. Reducing access to therapies, support workers or community participation would have serious consequences for her development and wellbeing.

I am particularly concerned about reductions to social and community participation supports. These supports are incredibly important for helping children with disability build confidence, social skills and inclusion within the community.

Without these opportunities, children risk becoming isolated and excluded from experiences many other children take for granted.

Concerns About Stricter Eligibility and Permanency Requirements

Down syndrome is a lifelong condition. The idea that families may need to continually prove permanence or repeatedly demonstrate the need for support creates unnecessary stress and emotional exhaustion.

I am also concerned about requirements to prove that “all appropriate treatments” have been tried before support is approved. Families are already doing everything they can to support their children. We spend enormous amounts of time attending appointments, implementing therapy strategies at home, coordinating supports and advocating for our children.

Additional barriers and proof requirements only increase the pressure on families who are already stretched emotionally, financially and physically.

Functional Capacity Assessments and Reassessments

One of the most stressful parts of the NDIS process is reassessment periods.

Submission 1448

Every reassessment brings anxiety around whether funding will continue, whether supports will be reduced and whether we will need to once again prove how important these supports are through reports and functional assessments.

Functional capacity assessments can also create significant financial costs and emotional strain for families.

As a parent, it is incredibly difficult having to repeatedly document and explain your cild’s challenges in detail in order to justify support. It can feel like families are constantly being asked to defend their child’s needs instead of being supported.

Longer-term plans for lifelong disabilities would reduce stress, create more stability and allow families to focus on supporting their children rather than constantly preparing paperwork and evidence.

Greater Reliance on Families and Carers

I am deeply concerned about increasing expectations being placed on families and unpaid carers.

As a mother and full-time carer, caring responsibilities already impact every part of daily life. Families often sacrifice employment opportunities, financial security, social connection and their own mental health in order to provide care.

There needs to be recognition that families cannot simply absorb more responsibilities if supports are reduced.

If access to support changes or funding is reduced, the risks for families like ours include:

• burnout
• financial stress
• mental health decline
• loss of routine and stability
• inability to work
• social isolation
• regression in developmental and social skills
• increased pressure on relationships and family wellbeing

The NDIS should not rely on families reaching breaking point before adequate support is provided.

Concerns About Shorter Plans and Funding Uncertainty

Funding uncertainty creates constant stress for families trying to plan therapy, supports and daily life.

Submission 1448

Children with lifelong disabilities need consistency and routine. Frequent reassessments and short-term plans create instability not only for participants, but also for therapists, support workers and families trying to maintain continuity of care.

Longer-term plans for participants with permanent disabilities would create greater stability and improve outcomes for families and children.

What I Want the Committee to Understand

Unless you are raising a child with disability, it can be difficult to fully understand the everyday impact and emotional toll it takes on families.

Families like ours are simply trying to give our children the best possible opportunity to live fulfilling lives and participate equally in society.

We are real people navigating real challenges every day.

The NDIS is not about luxury or unnecessary spending. For many families, it provides access to therapies and supports that would otherwise be completely unaffordable.

These supports help children with disability build skills, participate in their communities and reach their potential. They also help protect the wellbeing of entire families.

Recommendations

I respectfully ask the Committee to consider the following recommendations:

• Protect funding for therapies, support workers and social/community participation supports for participants with lifelong disabilities.
• Ensure changes to “reasonable and necessary” supports do not unfairly reduce access to essential therapies and supports.
• Introduce longer-term plans for participants with permanent disabilities such as Down syndrome to reduce unnecessary reassessments and stress on families.
• Limit excessive reassessment and functional capacity assessment requirements where permanence is already well established.
• Recognise the limits of unpaid carers and avoid policies that increase reliance on families without adequate support.
• Ensure participants and families are meaningfully consulted in future NDIS reforms and policy changes.
• Limit the use of automated decision-making and ensure participants have access to fair, transparent and human review processes.
• Continue strengthening provider accountability while protecting participant choice, dignity and inclusion.

Conclusion

I appreciate the opportunity to provide this submission.

Submission 1448

The NDIS has made an enormous positive difference in our daughter’s life and in our family’s ability to support her. I understand the importance of ensuring the NDIS remains sustainable for future generations, but this should not come at the expense of the wellbeing, dignity and inclusion of people with disability and their families.

I ask the Committee to carefully consider the real-life impact these proposed changes may have on participants and carers across Australia.

Families like ours are not asking for special treatment. We are asking for fairness, stability and the opportunity for our children to thrive.