In late January, I was chatting with my high-school modern history teacher, Helen*, about the upcoming National Disability Insurance Scheme plan review for her husband, Paul*.

The disability community had been on edge as major changes to both scheme law and its operations washed through from the year before. Testimony from grassroots groups about what was happening to them and their loved ones was alarming.

“We’ve got a year left in our plan,” Helen told me. “But I’m reading of so many people who have had 24/7 support having their plans halved. It’s rather disturbing. Everything is running so smoothly and all I ask is to be left alone to manage his plan like I always have.”

Six days later, Paul was dead and the baseline worry Helen had about his plan was replaced with a new, more urgent distress.