August 27th 2024.
The recent passing of a young man with muscular dystrophy has brought attention to the flaws within the National Disability Insurance Scheme (NDIS). This has sparked a call for action from his family and supporters, who believe that his suffering could have been prevented if these issues were addressed.
Jack Bailey, a university student from Brisbane, was able to live his life to the fullest thanks to the support he received from the NDIS. However, his loved ones claim that the system also failed him when he needed it the most. In a statement, Jack's parents, Deborah and Darryl Bailey, expressed their gratitude for the opportunities the NDIS provided for their son, such as moving out on his own, pursuing higher education, and becoming an active member of the community. However, they also acknowledged that the system is not perfect and has its flaws. They believe that bureaucracy, red tape, and incompetence caused Jack significant stress and anxiety, ultimately putting him at unnecessary risk.
At the young age of 19, Jack was living with late-stage Duchenne muscular dystrophy, a degenerative muscle condition, when he passed away on August 11th. According to his occupational therapist, Izzi Harman, Jack had been urgently requesting 24/7 support from the NDIS since November of last year. She believed that his life was at risk without it. Jack relied heavily on a power wheelchair and had very limited muscle movement, making it challenging to do simple tasks such as scratching his nose or getting out of bed. Harman submitted a functional capacity assessment with a risk matrix, stating that there was a high chance of mortality if Jack did not receive 24/7 care. Unfortunately, her request went unanswered, and in June of this year, Jack suffered a major cardiac incident while alone in his apartment.
Fortunately, Jack was able to call for help before losing consciousness, and his survival was nothing short of miraculous. His parents submitted an official complaint to the National Disability Insurance Agency (NDIA) regarding the incident. However, at a meeting with an NDIA planner weeks later, it was evident that the planner was not aware of Jack's close call and had not read any of the submitted documentation. This lack of awareness and preparation from the NDIA left Jack's loved ones feeling frustrated and disappointed.
In response to the incident, an NDIA spokesperson expressed their deepest condolences to Jack's family and acknowledged the difficult time they have faced. They stated that Jack had ongoing support from the NDIS, including daily assistance and access to additional on-call support when needed. His NDIS plan, which began in May 2024, was valued at over $531,000.
At the time of his passing, Jack had a support worker present in his apartment. However, Harman revealed that Jack's mind was still preoccupied with his NDIS struggles until the very end. Just minutes before his death, Jack texted Harman, asking about a letter she had written to NDIS minister Bill Shorten, highlighting his case. This heartbreaking detail serves as a reminder of the constant stress and pressure Jack faced due to the lack of necessary support from the NDIS.
Following Jack's passing, Harman started a Change.org petition calling for NDIS reform. She believes that while it is impossible to say whether the lack of 24/7 support contributed to Jack's death, the added stress and pressure likely took a toll on his already weakened body. She stated that constantly worrying about who would wake him up in the morning or if he would have someone there in case of a cardiac episode was incredibly taxing on Jack's health. Even after his near-death experience, the NDIS still did not provide Jack with the support he needed, which Harman believes was incredibly challenging for him both physically and emotionally.
Jack was not just a victim of the flaws within the NDIS; he was also a trailblazer who left a lasting impact on the disability community. He was a double degree student at the University of Queensland and the head of the social committee at the Queensland Power Chair Football Association. Harman fondly remembers helping Jack get on a surfboard a few months before his passing, something that had never been done before by someone with Duchenne muscular dystrophy. She describes Jack as a "yes" man, always determined to make things happen despite his condition. She believes that the NDIS enabled him to achieve so much, and she wants to ensure that the focus remains on the participants.
Jack's parents expressed their hope that lessons can be learned from their son's case. They want to ensure that his legacy of a life well-lived, supported by the NDIS, continues to inspire others. Jack's story comes at a time when a major and contentious NDIS reform bill was passed by the Senate, with support from the Coalition. The legislation aims to reduce the cost of the NDIS by $14 billion in four years, which has caused concern among disability advocates who fear that this will result in cuts to services and supports. The savings will be achieved by having the states and territories take on some responsibilities, addressing fraud within the system, and using defined lists for the supports available to NDIS participants.
In conclusion, Jack's story serves as a reminder of the importance of constantly reevaluating and improving the NDIS to ensure that it continues to provide adequate and timely support for individuals with disabilities. His legacy will live on through the lessons learned from his experiences, and his determination to live his life to the fullest will continue to inspire others.
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