Navigating the complexities of healthcare and support services can be a daunting task, especially when faced with a rare and debilitating condition. This is the reality for Karen Lockett, a Perth grandmother who has been denied funding by the National Disability Insurance Scheme (NDIS) for her one-in-a-million condition, stiff person syndrome.
Stiff person syndrome is a rare, progressive neurological disorder characterised by severe muscle stiffness and painful spasms, which can be triggered by stimuli such as noise, physical contact, or stress. The condition gained wider recognition when singer Celine Dion shared her own diagnosis in the documentary I Am: Celine Dion. Despite the visibility of such high-profile cases, many individuals like Karen struggle to receive the support they need.
Karen’s journey has been a long and arduous one, beginning over a decade ago with a misdiagnosis of anxiety, followed by functional neurological disorder (FND), before finally receiving the correct diagnosis of stiff person syndrome in November. The condition has left her reliant on a walker and the assistance of her husband, Alan, for everyday tasks.
The Locketts’ situation is further complicated by the fact that Alan, at 70 years old, has his own health issues to contend with. ‘It’s getting harder for me for sure and I’m not sure how much longer I can keep doing it, responsibly anyway,’ he expressed, highlighting the strain that caregiving can place on loved ones.
Despite the clear need for support, Karen has been denied NDIS funding. The NDIS has stated that access to services is based on a person’s functional impairment rather than their condition or diagnosis. Karen has been assessed three times this year, with the same outcome each time: she does not meet the eligibility criteria for NDIS support.
The National Disability Insurance Agency (NDIA) is currently reviewing her most recent application. The NDIA has emphasised that decisions are made based on all available evidence and in accordance with the Act, and that individuals can request a review if they disagree with a decision.
Have you or a loved one faced challenges in securing support? What advice would you give to others navigating this system? Share your stories and insights in the comments below, and let’s help each other through these complex processes.
Also read: Are whitegoods disability supports? Here’s what NDIS reforms say
