Navigating the complexities of motor neurone disease (MND) is a daunting journey, but accessing the right support services can make all the difference. Unfortunately, for families in regional Victoria like ours, finding an Occupational Therapist has been one of the biggest hurdles we’ve faced (outside of funding issues)—especially when it came to getting Shane’s bathroom project underway.
In our situation, it took more than 20 calls to finally find someone willing to come to Alexandra. When we did, the service came at a steep cost, with travel expenses alone making up a significant portion of the nearly $2,000 fee. The visit was critical—not just to get professional advice on the bathroom layout and fixtures to meet Shane’s needs but also to access My Aged Care funding, which required an Occupational Therapist’s report for approval.
Despite being assured that we would have the report within a week, delays mounted. Three weeks after the visit in late October, we were told it wouldn’t be ready until late January—a devastating blow. We wrote a letter pleading for them to consider the urgency of Shane’s situation, and thankfully, they expedited the report. Even so, by the time we received it, we had missed the opportunity to get the bathroom work started before Christmas. To make matters worse, we lost some of the original tradespeople who had generously offered to donate or discount their services.
These delays and costs highlight the broader issue of accessing Occupational Therapist services in regional areas. According to a 2022 study, rural and remote Australia faces significant shortages in allied health professionals, with many families waiting weeks or months for critical services (https://researchoutput.csu.edu.au/en/publications/the-persistent-shortage-of-occupational-therapists-in-rural-and-r). The result is often families, like ours, being left with tough decisions and significant delays.
We’ll share more details in our next post about what this update is costing and the funding we’re hoping to achieve to make it all possible.
This project is just one of many challenges we’ve faced, but we’re determined to keep moving forward. If you’d like to support Shane and our family, here’s how you can help:
- Donate directly to Shane’s MND battle:
https://shanelewismndbattle.com/donations/givewp-donation-form-2/ - Donate trades, services, or products:
https://shanelewismndbattle.com/contact-us/ - Support Shane’s grandson Finn’s MND Vic fundraising efforts:
https://www.mndrelay.org.au/my-fundraising/2896/finn-cadman
Thank you to everyone who has supported us along this journey. Every bit of help, whether financial, practical, or simply kind words, makes a world of difference.
Below: Me(Nicole), Shane & Finn last year in September out to make a great memory for Shane & Finn’s birthday. Shane turned 66 and Finn turned 10.
