If you’re diagnosed with MND in Australia there are two systems for government-funded support and care – the National Disability Insurance Scheme (NDIS) if you’re diagnosed under age 65 and the Aged Care system if you’re diagnosed aged 65 and over. They’re both meant to support the same disability, yet the funding levels, range of supports covered and timeliness couldn’t be more different.
It was late in 2019 my neurologist suspected that my symptoms pointed towards motor neurone disease, but I wasn’t formally diagnosed with MND until February 2020. Soon after diagnosis I was referred to MND Victoria, where I met my wonderful MND Advisor Fran.
As I was under age 65, I was eligible for a National Disability Insurance Scheme (NDIS) plan for my care and support and Fran, together, with the team at Calvary Healthcare Bethlehem (a MND multidisciplinary clinic), really helped me navigate the whole process of applying for NDIS support.
I was really pleased when my plan was accepted and it was only a matter of weeks before I started receiving the supports that I needed. The types of services and supports that you can receive through the NDIS include things like in-home care and social and community support, assistive technology (which I can either purchase or hire through my plan), and home modifications (such as ramps).
There isn’t an arbitrary cap on funding, so you don’t need to make a choice between getting a ramp installed or receiving in-home care, you just get the supports you’re assessed as needing that are reasonable and necessary and to live safe and well with a disability. There’s also no ‘waiting list’ – every one whose is approved for a NDIS plan receives one. If needs or circumstances change the plan can be reviewed.
As MND is a progressive disease, my disability needs have changed over time. I’ve had my plan reviewed several times since my diagnosis, and each time I’ve been fortunate to always receive the services and supports that work towards my plan goals and meet my changing needs.
I was 71 when diagnosed in 2020 with motor neurone disease had not long retired from full time work. I was independent, driving and managing life, sharing my home with my older sibling who had significant chronic health issues. I was primary carer for my sibling and together we muddled along nicely, despite my early MND symptoms including fatigue and changing leg and hand strength.
After registering with MND Victoria, I met my Advisor who discussed the benefits of being referred early to My Aged Care (MAC) in order to be approved for Commonwealth Home Support (CHSP) and waitlisted for a Home Care Package.
Because I was over the age of 65, I was ineligible for NDIS which felt very unfair to me. My Advisor agreed NDIS and MAC are unfair systems because NDIS is not accessible if you're diagnosed aged 65+, yet MND does not discriminate on the basis of age.
After a 3 month wait, I was offered a Level 2 Home Care Package (HCP). My MNDV Advisor said 3 months wait was quite quick relatively speaking as historically, as often HCP wait times have been over 12 months.
After discussion with my Advisor and two HCP providers, I declined this HCP for three reasons:
In late 2021, I was offered a Level 3 HCP and this time I accepted as I was feeling much more tired and overwhelmed with daily life and I needed the input of a Case Manager to help coordinate my supports. I knew as my MND symptoms increased, I would need more funding and funding flexibility which a HCP offers. CHSP funding is rigid, prescriptive and finite.
I am determined to remain home until end of life, so accepting this HCP makes more sense now, but it still frustrates me that I must pay high fees, when NDIS users pay nothing. I worry that even a Level 4 HCP may not be enough to support me at home over the long term and that I may be forced to pay privately for top up care at home. Permanent residential aged care will only ever be a very last resort.