From: , Mother and Primary Carer of a 16-year-old son with Down Syndrome

Location: Sydney, NSW

Introduction

My name is , and I am the mother and full-time carer of a 16-year-old boy with Down syndrome. I am writing to express my deep concern about the proposed changes and budget reductions to the National Disability Insurance Scheme (NDIS). These changes will have profound and long-lasting consequences for my son’s development, independence, and future participation in society.

I urge the Senate to consider the lived reality of families like mine before implementing reforms that risk undermining the very purpose of the NDIS.

1. How Budget Cuts Will Impact My Son’s Life

My son is at a critical stage of adolescence. The supports he receives now will determine whether he enters adulthood with the skills, confidence, and independence he deserves. Reducing his NDIS funding would have the following impacts:

Loss of essential therapies

• Therapy supports such as speech therapy, occupational therapy, and physiotherapy are not optional extras. They are the foundation of his communication, mobility, and daily living skills.

• Cuts would mean fewer sessions, longer gaps between interventions, and slower progress — or even regression.

Reduced capacity-building opportunities

• Teenagers with Down syndrome require consistent support to build independence, social skills, and emotional regulation.

• Reduced funding would limit his access to programs that help him learn life skills, prepare for employment, and participate in the community.

Increased pressure on families

• When supports are cut, the burden shifts directly onto families.

• As a parent, I already juggle caring responsibilities, advocacy, and managing complex administrative requirements. Cuts would force me to reduce work hours or leave employment entirely.

Higher long-term costs to government

• Early and consistent intervention reduces long-term reliance on government services.

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• Cutting funding now will inevitably lead to higher costs in health, welfare, and crisis services later.

2. The Real Cause of Cost Blowouts: Provider Practices and Administrative Failures

I strongly believe — and many families agree — that the NDIS cost blowout is not caused by participants or their families. Instead, it stems from systemic issues that the government has the power to fix.

A. Lack of provider accountability

Many families have experienced:

• Overcharging
• Inflated hourly rates
• Unnecessary services
• Providers exploiting plan budgets because there is little oversight

This behaviour drives up scheme costs while delivering no additional benefit to participants.

B. Administrative inefficiencies

The current administrative structure is:

• Slow
• Inconsistent
• Prone to errors
• Vulnerable to manipulation

These inefficiencies create unnecessary plan reviews, appeals, and delays — all of which cost money and reduce trust in the system.

C. Vulnerability to corruption

The NDIS has become a target for unethical providers because:

• Oversight is weak
• Audits are infrequent
• Enforcement is inconsistent

Families like mine are left to navigate a system where we must constantly question whether providers are acting in our child’s best interests.

3. Recommendations for Reform

I urge the Senate to consider reforms that protect participants while addressing the real drivers of cost escalation.

1. Conduct regular, mandatory audits of providers

   • Implement provider audits to identify overcharging, fraud, and unethical practices.

   • Enforce penalties for misconduct and remove non-compliant providers from the scheme.

2. Overhaul NDIS administration

   • Simplify processes to reduce administrative waste.

   • Improve staff training to ensure consistent decision-making.

   • Introduce transparent guidelines to reduce unnecessary plan reviews and appeals.

3. Protect participant funding

   • Guarantee that any cost-saving measures do not come from reducing supports for people with disabilities.

   • Ensure that participants — especially children and teenagers — receive stable, long-term funding that reflects their developmental needs.

4. Invest in early and ongoing intervention

   • Prioritise funding for therapies and capacity-building supports that reduce long- term costs.

   • Recognise that adolescence is a critical period for people with Down syndrome and other disabilities.

Conclusion

The NDIS was created to give people with disabilities the opportunity to live full, meaningful lives. Cutting participant budgets will not fix the scheme — it will harm the very people it was designed to support.

My son deserves the chance to grow into an independent, confident adult. The supports he receives now are essential, not optional. I urge the Senate to focus on provider accountability and administrative reform rather than reducing funding for families who rely on the NDIS every day.

Mental health, burnout and breakdown in entire families will be the main impact of this proposed bill.

Thank you for considering my submission.