On July 30, in response to Minister Bill Shorten’s April announcement on tackling illegal overcharging within the NDIS, I wrote an open letter highlighting the unintended yet severe impacts of these policies on participants like Jack, who had late-stage Duchenne muscular dystrophy.

With the support of the NDIS, Jack was able to live independently, interstate from his family, while studying full-time towards a double degree at university. He played powerchair football, served on the Queensland Powerchair Football Association (QPFA) board, and worked as a lived experience advisor and an access consultant. The NDIS empowered Jack to achieve so much, allowing him to live a full and meaningful life.

However, when Jack needed the most support, the NDIS let him down. Recently, without sufficient explanation, the NDIA revoked Jack’s control over his support workers. This decision had devastating consequences. Alone in his apartment, Jack suffered a major cardiac incident that required an emergency pacemaker implantation. He barely managed to call for help before losing consciousness, and his survival was nothing short of miraculous.

Despite urgent requests and extensive documentation, Jack’s need for 24/7 care was not met. This failure put his life at further risk and highlights a critical issue within the system—policies that focus more on preventing fraud than on ensuring participants can live safe and dignified lives.

Tragically, Jack passed away on Sunday. Just before his passing, he texted me, asking if there had been any response to our letter—a clear indication of his lingering hope for change and his concern for others in his situation. His final inquiry went unanswered.

We are petitioning Minister Bill Shorten and the NDIA to:

• Review and reform current policies to prevent the revocation of essential support without detailed justification, ensuring all participants receive the care they critically need.
• Take immediate action to address the bureaucratic delays and funding inadequacies that endanger the lives of NDIS participants.

By signing this open letter, you are not just supporting a cause; you are standing up to call that the NDIS lives up to its promise of providing a better, more dignified life for all Australians with disabilities. It’s time for those in power to listen and act.

Jack deserved better. We all do. His final message underscores the urgent need for change. Let’s make sure his legacy leads to the change he fought for.

The Human Cost of NDIS Fraud Policies by I.Harman

Sign and share this petition to call for immediate reforms in the NDIS. Honour Jack’s memory by ensuring no one else faces the challenges he did. Listen to Jack and share with the hashtag #ListenToJack.