This Is What It’s Costing Us: 12 Raw Quotes About the NDIS Crisis

NDIS Community Submission Summary (2025)

Based on 100+ community forms submitted via the Speak Up for Change portal
Compiled by Jane McFadden, ADHD Mums

Executive Summary

The recent NDIS changes — including the 2024–25 funding shifts, fixed support categories, and slashed travel rates — are already harming vulnerable participants and providers.

Across more than 100 submissions, a consistent picture emerges:

The system is being restructured faster than families and providers can keep up — and without alternative supports in place, people are falling through.

This summary outlines recurring themes from those affected and provides evidence-backed insights into what must urgently change.

Key Themes from Participants and Families

1. Cuts Are Hitting Before Replacements Exist

‘I don’t have a solution. But it can’t be to remove supports before the new ones exist.’ – Bree, Mum

• Participants are having plans reassessed, downgraded, or denied with minimal explanation.
• Families report that services are being removed or rejected under vague assessments of ‘reasonable and necessary,’ especially for therapies like psychology and speech.
• Many highlight that foundational supports (which were meant to catch people falling off the scheme) have not been built, yet cuts are already rolling out.

2. Travel Cuts Are Collapsing Outreach Services

‘I support children who cannot access clinic-based services. If I can’t travel, they get nothing.’ – Christina, Allied Health Provider. 

• Multiple allied health professionals, particularly sole traders, social workers, and mobile therapy teams, report that the 50% cut to travel funding means they can no longer viably reach remote or high-needs clients.
• Services embedded in rural/outer metro areas are pulling out due to unsustainable margins.
• Children who rely on in-home or school-based sessions (due to anxiety, trauma, or disability-related distress) are losing access altogether.

3. Waitlists, Delays, and Burnout

• Families waited 6–12 months just to be accepted into NDIS, only to receive insufficient plans that don’t match documented needs.
• The mental health burden is increasing: self-harm, school refusal, and family breakdowns were mentioned repeatedly.
• Several parents mentioned having to quit work to advocate full time or fill in service gaps.

4. NDIS is Undermining Best Practice

‘Therapy in the child’s safe space is the gold standard — but now it’s unaffordable.’

• Families and providers alike are reporting that decisions being made contradict participant needs and professional recommendations.
• Children with PDA, trauma backgrounds, or complex profiles are being told to use telehealth or clinic-only models that actively worsen outcomes.
• NDIS planners are ignoring documented clinical recommendations, including in official reports.

5. The New Funding Categories Don’t Allow for Fluctuating Capacity

• Parents of neurodivergent kids with episodic challenges (e.g. shutdowns, trauma triggers, transitions) are finding new budgets inflexible and prescriptive.
• ‘Bucketed’ funding means families can’t shift money to meet needs when things escalate.
• Unused funds don’t roll over across plan years, punishing those navigating fluctuating capacity or long waitlists.

6. Female-Led Industries & Providers Are Being Decimated

‘We are the only workforce being offered a pay cut.’ – Lyndsay, Allied Health Provider

• OT, speech pathology, and social work — all heavily female-dominated — are being hit hard by rate freezes and reduced reimbursements.
• Providers cite burnout, caseload drops, and plans to exit the NDIS system altogether.
• Some raised gender equity concerns, noting allied health underpayment compared to schemes like Comcare, WorkCover, and RTWSA.

7. No Real Consultation — and Deep Distrust

‘They used our work to justify their changes, then ignored our voices.’

• Many providers felt the consultation process was tokenistic or retrospective.
• Multiple parents reported submitting feedback that was never acknowledged.
• The recent NDIA decisions feel rushed, top-down, and politically driven rather than participant-focused.

Additional Noteworthy Patterns

• Providers flagged that 90%+ of their caseloads are NDIS-funded — many will be forced to shut down if funding structures continue in this direction.
• At least a dozen participants with Level 2–3 autism, trauma, ADHD, or co-occurring conditions were either removed from NDIS or given plans that did not match Functional Capacity Assessment findings.
• School supports, social therapy, and access to psychology are being denied for ‘not being disability-specific,’ despite clear diagnostic history.

Recommendations from ADHD Mums

1. Pause implementation of current PAPL(Pricing Arrangements and Price Limits) and funding structure changes until a full impact assessment is completed.
2. Restore travel allowances to sustainable rates — particularly for rural, in-home, and early intervention services.
3. Rebuild trust with lived-experience families and providers through independent oversight and transparent consultation.
4. Ensure funding structures allow for episodic needs and fluctuating capacity, especially for neurodivergent and trauma-impacted clients.
5. Fund allied health rates in line with other government schemes (Comcare, WorkCover) — acknowledging gender and sector pay inequity.
6. Develop interim support pathways for participants removed from NDIS while ‘foundational supports’ remain unavailable or theoretical.

Conclusion

These 100+ forms show a scheme under stress, a provider network nearing collapse, and a wave of family burnout that will have long-term impacts on children, carers, and professionals alike.

This isn’t a niche problem. It’s a national pattern.

If these changes are not paused or corrected, the NDIS risks becoming a gatekeeping system instead of a lifeline — and the cost of inaction will be far greater than the cost of care.