When Shane was diagnosed, we expected challenges. We expected difficult conversations, medical appointments, and adjusting to new realities. What we didn’t expect was the sheer mountain of paperwork that came with it.
We have two lever arch files full of forms, applications, and endless duplicate requests for the same information. Navigating disability support was a nightmare, made worse by processing delays and bureaucratic hoops we had to jump through. The only reason we managed was because I took on the role of sorting it all out for my parents. But what happens to those who don’t have a family member or friend to advocate for them?
One of the most frustrating aspects was the waiting periods. We were constantly told that payments would be backdated, but no one mentioned that the maximum backpay was only three months. When you consider that wait times for disability payments can be 12 months or more, this policy fails to account for the brutal reality of MND. Many people simply don’t have 12 months to wait.
On top of that, it’s incredibly difficult to even figure out what payments to apply for and what you’re eligible for. The process is confusing, overwhelming, and time-consuming. We were fortunate to have the support of MND VIC, who helped guide us through it, but without them, we would have been completely lost.
We had to escalate our case through local MPs just to get things moving. It shouldn’t have to be this way. The system needs to change, people with terminal illnesses shouldn’t have to fight just to get the support they need.