The NDIS was built on a vision of inclusion, dignity and empowerment. But to realise this vision, families need to be shown compassion and have human connection with agencies, writes Legal Services SA chief executive Annmarie Lumsden.
When the National Disability Insurance Scheme (NDIS) was introduced, it carried the promise of dignity, support and autonomy for people living with disability. But from where we stand, as legal aid lawyers representing some of our the most vulnerable NDIS participants in appeals, its bureaucracy delivers something entirely different: silence, delay and systemic powerlessness.
Our team of lawyers at Legal Services act for NDIS participants in appeals at the Administrative Review Tribunal. We have just come through months of advocating for a nine-year-old girl with complex and high needs. This child “Emma” (not her real name) has a lengthy list of disabilities including Global Development Delay, Autism Spectrum Disorder and Epilepsy, among other conditions.
Emma’s family have sought increased supports for their daughter’s complex needs. In December 2024, the National Disability Insurance Agency (NDIA) agreed to replenish Emma’s funding, as the family were without funding to provide for Emma’s support needs. By March 2025, the money had not arrived. Emma’s parents were thousands of dollars in debt to support providers, some of whom stopped providing services altogether due to non-payment. The Agency failed to provide an updated position, failed to respond to emails and failed to meet promises made at the Tribunal.
By April 2025, the Tribunal Member called the NDIA’s behaviour ‘outrageous’ and ‘unacceptable’. For the first time in this long, exhausting legal process, it felt like the Tribunal was listening.
But that moment of recognition couldn’t undo the months of distress from the NDIA’s delays. And sadly, it wasn’t enough to stop the delays. The NDIA only agreed to replenish Emma’s funds five months after it was agreed, after we contacted a Director to request for help. By then, Emma’s parents were physically and emotionally exhausted. Emma’s mother had said she “can’t go on”.
The NDIA delays particularly harm clients with a severe disability, often with complex needs and rapid deterioration in their functional capacity. These clients are highly vulnerable and need swift decisions when their disability rapidly worsens. Their families are left to carry not only the emotional and physical toll of caregiving, but also the burden of poor NDIA practice. Families describe seeking help at NDIA offices that are virtually empty of staff, staff losing paperwork, staff never responding to emails to the NDIA Enquiry line, and staff closing complaints without ever investigating them.
At Legal Services we act for families of complex needs clients in crises, left to care for those with severe disability and urgent needs in dangerous living situations. We see funding replenishment requests to the NDIA that are ignored, and debts that accumulate. We see families pushed to the brink, struggling to care for loved ones with profound disabilities, while waiting endlessly for a response from the NDIA.
Appeals can drag on for more than twelve months in the Administrative Review Tribunal. To families, it feels like an adversarial process where they are David facing Goliath. And if families do not have legal assistance, they endure this traumatic and adversarial appeals process alone.
Beyond the human cost, the economic impact of this systemic inefficiency is staggering. Private lawyers at big firms carry high caseloads of NDIS cases, mostly against self-represented applicants. When matters do not resolve at the case conference and conciliation stage, the NDIA engages private barristers to defend its position at hearing. It’s an expensive game, with a huge imbalance of power between families and the NDIA.
What families need is a NDIA that is trauma-informed and disability-aware, with leadership that values responsiveness, community presence, and accountability. Families need to see NDIA staff working from local NDIS offices, picking up the phone and meeting participants and their families. Families need high-needs and crisis cases to be fast-tracked, with clear escalation pathways and urgent funding responses for people with severe disabilities or rapid deterioration in functional capacity. Families need internal review officers meeting families face-to-face, reviewing evidence thoroughly, and being accountable for the accuracy of their decisions.
The NDIS was built on a vision of inclusion, dignity and empowerment, and that vision is still within reach. But to realise this vision, families need the NDIA to have a culture built on compassion and human connection with those they serve. Every child like Emma deserves a system that sees her, hears her, and acts with urgency. The promise of the NDIA to treat people with dignity, support and autonomy is not broken, but it must be reclaimed.
-Legal Services SA chief executive officer Annmarie Lumsden with lawyer Lucy Ryan
National Legal Aid
National Legal Aid (NLA) supports the call for systemic reform of the NDIA outlined in this article by Legal Services Commission of South Australia lawyer Lucy Ryan and CEO and NLA Chair Annmarie Lumsden.
Our recent NDIS Appeals Program Evaluation reflects many of the insights contained in the article, particularly the need to address chronic under resourcing, and the necessity of legal assistance services for people with disability to safely, fairly, and efficiently navigate the complicated and costly appeals process.
Adequately funding these services saves money in the long run by aiding efficiency and effective decision-making. But the impact on the quality of life for people with disability is the most important outcome. The article illustrates this point all too well.
NLA is calling on the government to reflect their commitment to access to justice for people with disability by implementing the recommendations of the report and providing ongoing and adequate investment.
You can read the full report here: https://nationallegalaid.org.au/policy-and-advocacy/reports/ndis-evaluation