Nothing about us, without us

Jack Bailey was a remarkable young man who, with Duchenne Muscular Dystrophy (DMD), accomplished incredible things thanks to the support of the NDIS. He lived independently, far from his family, while studying full-time toward a double degree at university. He played powerchair football, served on the Queensland Powerchair Football Association board, and made a significant impact as a lived experience advisor and access consultant.

However, when Jack needed the system most, it let him down. After the NDIA revoked his control over his support workers, Jack was left without the critical 24/7 care he needed to live safely. This led to a serious cardiac incident while Jack was alone in his apartment. He managed to call for help before losing consciousness and was later fitted with an emergency pacemaker, allowing for a short period of recovery. Tragically, Jack passed away about a month later. 

Just before his passing, Jack texted close friend Iz, asking if there had been any response to their letter to Bill Shorten, which challenged the then Minister for disability and the NDIS over harmful alterations to the scheme, a sign of his enduring hope for change and concern for others in similar situations. His final inquiry went unanswered.

Our voices are making a difference. The NDIS Ministerial Complaints team acknowledged Jack’s story and letter. But there is still more to be done. Jack’s story must be shared to ensure that those in power truly listen.

We can honour Jack’s memory by pushing for the reforms needed to ensure that no one else faces the challenges he did.

You should ask how you can use your voice to make positive change in the world.