NDIA Changes Threaten Life, Dignity of Man with Muscular Dystrophy, He Claims

Joshua Ruff, a 33-year-old man living with Duchenne Muscular Dystrophy, fears the National Disability Insurance Agency (NDIA) is jeopardizing his life and dignity through abrupt changes to his support plan. Ruff, who uses a wheelchair and designed a lavender farm featured on ABC TV's Gardening Australia, has self-managed his NDIS package since 2017, including paying family members for essential care.

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The current supports have been there for five or six years and they (support workers) understand my conditions … I'm able to trust them and they understand me very deeply in how to care for me.

Following a severe health scare in March that resulted in a cardiac arrest, tracheostomy, and full respiratory support, Ruff requested a review of his NDIS plan to accommodate his increased needs. However, he states the NDIA converted his plan to agency-managed without his consent and prohibited him from continuing to employ family members as paid support workers. An NDIA email indicated that family members would only be paid for support in 'exceptional circumstances' and that the agency would help find suitable providers.

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I rely completely on the supports I have carefully built around me to stay alive and to live with dignity.

Ruff contends that this decision was made without genuine consultation and strips him of his autonomy. He emphasizes that his current support workers, who are family members, have been with him for years, understand his condition intimately, and provide care he can trust. He wrote to the NDIA on June 24, stating, "I rely completely on the supports I have carefully built around me to stay alive and to live with dignity."

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In my regional community, specialist disability workers are scarce … this is not a team that can be replaced overnight, or at all.

He further highlighted the critical shortage of specialist disability workers in his rural community, describing his support team as irreplaceable. Ruff expressed that the NDIA has offered no assistance in transitioning to a new system, leaving him to navigate an "actively failing" process he did not choose or prepare for. Despite his medical challenges, Ruff asserts his cognitive abilities remain unchanged, and he continues to manage all aspects of his care and support, with his treating specialists endorsing his chosen workers.

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I have been left to navigate a system I did not choose, was not prepared for and is actively failing me.