The NDIS: A System Leaving Families in Limbo

By Ellen Mitchell

Navigating the National Disability Insurance Scheme (NDIS) can feel like stepping into a new job where no one truly understands what they’re doing—and yet, they’re expected to train you. For many carers and participants of the NDIS, this lack of clear guidance is not just frustrating—it’s debilitating.

As a parent to three young NDIS participants, the challenge began early. When my youngest son, born with a congenital heart condition, was referred to the NDIS for global developmental delay before his first birthday, our family felt hopeful. He was quickly approved for funding, but I was astounded by the lack of direction. While the funds are managed by a plan manager, I was given no guidance on how to spend them effectively to meet my son’s needs.

Then COVID-19 hit. Although we had funding for support, services were suddenly unavailable, and long waitlists became the norm. Unsurprisingly, my son’s funding was drastically reduced upon review—not due to a lack of need, but because of service shortages and a lack of understanding on how to utilise the funds effectively.

Our journey continued with my daughter, whose early school years revealed significant social and behavioural challenges. Initial indications pointed to ADHD, a diagnosis that the NDIS doesn’t cover. When ADHD medication didn’t address all her difficulties, autism spectrum disorder (ASD) became a likely explanation. In desperation, we paid nearly $2,000 for a private assessment, which confirmed her ASD diagnosis. Before this, she had been denied NDIS early intervention funding because she didn’t meet their criteria—even though her behaviours clearly indicated a need for support and she was within the age range. Between assessments and privately funded therapies, we paid nearly $10,000 within a year.

Our experience wasn’t unique. Moving to a public-school environment helped her thrive, as public schools receive better government support for children with ASD. But the school experience reinforced a major issue: funding gaps and restrictive criteria within the NDIS for children who don’t perfectly fit bureaucratic standards.

Then came our third child, who, like his twin, began showing signs of developmental delays. By this point, I was coordinating weekly therapies for all three children, juggling appointments around a full-time job. Each of them attended occupational therapy, speech therapy, and play therapy, while also meeting with a psychologist. But despite these efforts, my sons continued to struggle—and then their childcare facility terminated their enrolment, citing a lack of skilled or experienced staff.

With no option left, I have had to resign from my job to care for my children full-time, yet I’m unable to receive carer’s allowance due to a lack of formal ASD diagnoses. Even though each child’s NDIS plan includes funding for assessments, the NDIS does not cover the actual ASD diagnostic assessment, which is the key to accessing further educational support. With limited public diagnostic pathways in place, waitlists stretch up to three years. While private assessments are available, they cost between $1,500 and $2,000 per child.

Without these diagnoses, our children’s schools are unable to apply for the necessary funding and support to ensure a safe, inclusive environment. We’re left in limbo, trapped in a cycle of inadequate support and overwhelming bureaucracy. The assessments from occupational therapists, speech therapists, and educators familiar with the child go largely ignored by the NDIS unless confirmed by a formal ASD assessment – something performed by complete strangers to the child.

The numbers speak for themselves: 35% of NDIS participants list autism as their primary disability, and 78% of these individuals are under 18. But for families like ours, even with clear professional evidence of ASD, critical funding for formal diagnosis remains out of reach. There is no clear data on how many early intervention participants go on to receive a formal diagnosis, but its easy to imagine that many children are left behind due to a lack of consideration in how to support families transition from the early intervention stream to disability stream.

It’s time for the NDIS to recognise the needs of these families. Approval for ASD assessments should be included as part of early intervention support when ASD is clearly suspected by multiple allied health professionals. This small policy change could drastically reduce the emotional and financial burden on families, sparing parents from needing to choose between paying for private assessments and meeting daily needs.

The NDIS is undeniably a lifeline for many, but its current structure fails to support participants and carers effectively. Families should not have to become de facto experts, navigating convoluted systems and filling gaps left by unclear policy. The strain of fighting for basic support, for funding that aligns with the actual needs of our children, is unrelenting. The NDIS needs to look beyond individual participants and see the impact on entire families struggling to balance care with limited resources and guidance.

This isn’t just a health issue or a disability issue—it’s a fundamental human rights issue. It’s time for policymakers to address the gaping holes in the system and move past the bureaucratic stalemate. Families across Australia are depending on it.

Data obtain here: https://www.ndis.gov.au/news/9601-participant-dashboard-updates