Privately-funded equipment is the backbone of MND support as we wait years for equal funding

Coinciding with Motor Neuron Awareness Week, MND Victoria CEO Kate Johnson is urgently calling for more equipment support while the sector waits for royal commission changes.

A motor neurone disease (MND) diagnosis instantly flips a person’s life on its head, with disability equipment often quickly needed to deal with rapid progression of symptoms. 

About 60 per cent of approximately 450 Victorians who live with the devastating disease are diagnosed over the age of 65. That’s why recent recommendations from the Royal Commission into Aged Care Quality and Safety for better funding for older people with disabilities are an important step in the right direction.

But these utterly crucial proposed changes, which will immediately improve the physical support services available to people living with MND above 65, are simply not coming fast enough.

As the only not-for-profit organisation providing practical MND care services in the state, MND Victoria is acutely aware of the barriers experienced by those relying on My Aged Care rather than those on the National Disability Insurance Scheme. 

Our donor-funded Equipment Service has consistently filled the void by providing assistive technology and equipment that is desperately needed by older people living with MND, at no cost. Having a library of loan equipment on hand for anyone in need has been at the core of our mission since our inception 40 years ago.

From electric wheelchairs and beds, to shower stools, specialised pillows and iPads, we offer a wealth of free equipment that keeps people living with MND safe, comfortable and mobile for as long as possible. 

Our system ensures people get a choice in their assistive technology, which is delivered in a timely and personal way, while also supporting carers. 

With an average life expectancy of just 27 months after diagnosis, essential disability support needs to be on hand as soon as possible to cater for potentially rapid deterioration. 

Victorians with a disability under 65 years old have NDIS plans that include a budget to purchase the assistive technology they require, but this seamless funding is sadly not available to everyone. 

An MND Victoria client using robotic arm assistive technology.

Take Geelong resident Lance Collins, for example, who was diagnosed with MND in the midst of the coronavirus pandemic. 

Lance, aged 75, has an increasing need for assistive technology as his disease progresses. After losing the ability to use his hands and arms, he was provided with an Obi Robotic Arm through the MND Victoria library so that food could easily reach his mouth.

Facing costs as high as $9,500, Lance’s My Aged Care funding only met 30 per cent of the equipment fees. MND Victoria works hard to privately fundraise for the remaining 70 per cent, which would otherwise leave people like Lance and his blind wife Cecile with a crippling financial burden.  

Lance’s story is just one of many that proves the My Aged Care system is letting down one of our most vulnerable communities. Without private citizens donating to our Equipment Service, older people with MND would be faced with barriers to support at home and unreasonably high costs for essential equipment.

It’s common stories like these that make us strong advocates of NDIS coverage for all people diagnosed with rapidly progressing neurological conditions, regardless of age.

That’s why we welcome royal commission recommendations that people above 65 with disabilities should have access to the same daily living support as those on the NDIS, and that funding should equip people with assistive technology and home modifications.

 These are vital steps, but an advised timeframe to make changes by July 2024 – three long years from now – is simply not acceptable.

With a short life expectancy, most MND sufferers today won’t see the day where they have equal access to support at home, choice and independence. In the meantime, older people with the disease must rely on a system that is severely capped, means tested and designed to address ageing rather than disability.

MND Victoria refuses to discriminate by age and we are committed to providing crucial assistive technology and equipment to all Victorians with MND through our equipment library. But we continue to urge for the immediate reform of My Aged Care to support those with neurological diseases like MND, along with other disabilities.