Submission 2241

To the Committee Secretariat,

1. Introduction and Context

Thank you for the opportunity to provide a submission to this inquiry. My name is , and I am writing to you as a parent and full-time carer living in South Australia.

My eight-month-old daughter has Down syndrome. Our family has been navigating the NDIS for the entirety of her short life, entering the scheme immediately after her diagnosis. I am writing to implore the Committee to consider the real-world, human impact of the proposed legislative amendments on the youngest and most vulnerable participants in the scheme, and the families who care for them.

2. The Power of Early Intervention: What the NDIS Makes Possible

Because of our access to the NDIS, my daughter has been able to receive consistent physiotherapy and occupational therapy (OT) from her earliest months.

The practical impact of this funding cannot be overstated. With this early intervention support, my daughter is actively reaching developmental milestones, improving her muscle tone, and learning to support her head. Soon, she will also require speech pathology to assist with her communication and feeding. Because of her condition, she also relies on specialized funding for adaptive equipment that ensures she can safely engage with her environment.

The NDIS, at its best, gives my daughter an equitable start in life. It provides the foundational scaffolding she needs to grow, learn, and eventually thrive as an independent member of our community.

3. Key Concerns Regarding the Proposed Bill

The Risk of Tightening “Reasonable and Necessary” Supports and Eligibility

My daughter’s disability is permanent, and her need for therapeutic support is absolute. I am deeply concerned that tightening the definitions of “reasonable and necessary” supports or

Submission 2241

placing stricter functional capacity hurdles on early intervention, will jeopardise the therapy she relies on.

For an infant with Down syndrome, therapy is not a luxury; it is a critical medical and developmental necessity. Any legislative change that creates bureaucratic delays, mandates excessive reassessments, or narrows what the NDIS will fund risks interrupting her therapy during the most critical window of her brain and physical development.

Shifting the Burden to Unpaid Carers and Families

Raising a child with significant developmental delays requires an immense amount of emotional, physical, and financial energy. I am concerned that aspects of this Bill place greater expectations on families and unpaid carers to absorb support roles.

Families are already doing everything they can. The financial reality is that without NDIS funding, our family simply could not afford the private cost of ongoing physiotherapy, occupational therapy, speech pathology, and specialized equipment. If the scheme reduces funding under the assumption that families can “pick up the slack,” it will price children like my daughter out of the essential care they deserve.

What the Committee Must Understand: The Impact on the “Village”

What policymakers and those without lived experience of disability often miss on paper is that disability never just affects a single person. It affects that person’s entire village.

When a family is supported by the NDIS, the parents can be parents, siblings are supported, and the home remains stable. If you cut funding, reduce access to equipment, or make an already exhausting system harder to navigate, you do not save money in the long run. Instead, you set a child up to fail from infancy, and you cause the family village to crumble under the weight of financial stress and exhaustion.

The legislative framework should be designed to make our lives easier, not harder.

5. Recommendations to the Committee

I ask the Senate Committee to recommend the following safeguards and amendments to the Bill:

• Protect Early Intervention: Guarantee that children under the age of 9 with diagnosed, permanent genetic conditions (such as Down syndrome) are completely exempted from restrictive definitions of “reasonable and necessary” that might limit access to core pediatric therapies (Physio, OT, Speech).

Submission 2241

• Acknowledge Family Capacity: Ensure that any assessment of “informal supports” explicitly recognises the physical, emotional, and financial limits of parents, ensuring the Bill does not force unpaid carers to absorb specialised therapeutic roles.
• Simplify, Don’t Complicate: Ensure that the operationalisation of this Bill focuses on cutting red tape for families managing lifelong diagnoses, rather than creating complex reassessment cycles that cause unnecessary anxiety.

Thank you for taking the time to read my submission and for listening to the families who rely on the NDIS every single day.

Sincerely,

Angle Vale, South Australia

Sent from my Galaxy