Bob and Julie's Story


Bob was almost 69 when he was diagnosed with motor neurone disease (MND). From then on everything changed. Bob had to leave his job, and plans to travel with his wife Julie during their retirement were cancelled.

Being diagnosed at age 69 meant that Bob and Julie have to rely on Aged Care services to meet their care and support needs, rather than go to the NDIS which is limited to those under the age of 65. And although they have recently been moved on to the highest level package available, this is still not enough to cover the increasing costs of living with motor neurone disease.

Bob said: “Your retirement is completely changed. Where instead of being able to do some travelling etc, that’s been cut out for both of us.

A lot of the money we had earmarked for that we have spent on house modifications and equipment around the place. We did receive some under MASS (medical aids subsidy scheme) but the rest has been up to us really.”

Bob and Julie applied for Aged Care support not long after Bob was diagnosed and were initially awarded a level 1/2 package in 2013 but despite Bob’s needs increasing, it was just over a year ago that they were finally given the higher level package.

Julie said: “The service providers couldn’t give us the help we wanted and they said ‘oh no, it’s a good idea to bank your money, you’ll need it later on.’ And then we kept on saying ‘we need more help, we need more help’ and they kept saying ‘we don’t have the staff, we don’t have the staff’ so we actually changed ships to another group and some of that banked money we are now using because we need more care than what we can afford through the Level Four package. But I don’t know how long that will last, that’s the problem now.

Moving from the lower to the higher level care package wasn’t without its problems either.

Bob and Julie said: “We’ve only been assessed once and that was not long after diagnosis and I think it was fairly confronting because the whole thing was new and raw. And then about two years ago they wanted to reassess Bob and I said ‘no, there’s no need to, don’t you know what his diagnosis is?’ and the two people that rang me from ACAT had no idea what MND was! And then finally a woman rang me and I said ‘Look, this is ridiculous! Reassessing when the needs are just escalating. It’s Motor Neurone Disease, surely you don’t have to spell out the obvious!’ She said ‘I know exactly what it is, and I’ll push everything through.’ And I think that’s when we went onto the Level Four. But they wanted to send someone to the house to reassess you. Silly things like that.

There was a person who came out and we assumed that she knew about MND but by the time you got talking to her a little bit, you found out that she did not know anything about MND. She only tried to push across that she did. Once we found out you felt like saying ‘look, you’d better go because this is just useless!’ We even had to pay for that person to come out.”

Despite being on the high package now, Bob and Julie are still not receiving the level of care and support Bob needs, and have been forced to spend their savings and superannuation on housing adaptations and equipment, which can be extremely costly. 

Julie and Bob said: “We bought our own hospital bed and manual chair and shower chair and ramps, a lot of those Tyrex ramps we put in ourselves around the house. And an internal ramp and an external ramp to the carport. We’ve done all of that.

We do use taxi vouchers a bit. But also we do use the mechanical wheelchair, you know, go out in that, and that means that Julie has got to lift it in and out of the vehicle, which works pretty well but does get a bit tiring for Julie.

Once I can’t transfer Bob in and out of the car, we’ll be using taxis all the time with the powered chair. But we can’t afford to change cars. We’re more restricted going out and spend more time at home.”

Julie added: “So the Level Four Package… It would be nice to have some psychological support with it, but everything they say ‘you’ve got to pay out of your package’, but we need the package for care time rather than anything else.

And from six o’clock in the evening until six o’clock in the morning, or seven o’clock, you don’t get anything. That’s totally Julie. It would be nice to have some additional care during those hours.”

MND is not an age-related condition, but a medical condition that requires complex and flexible care and support. Simply because Bob was diagnosed aged 69 he was denied access to appropriate care and support through the NDIS, and is forced to rely on Aged Care that is not designed to cater for people with disability needs. 

Thank you to everyone who emailed their federal MPs or election candidates about this issue. We have now closed our automatic 'email your MP' function. However, you can still call or write to your federal representatives about this issue by finding their contact details on the Australian Government website. We also have a suite of resources to help you communicate with elected representatives and decision makers about how they can change the system to improve Aged Care services for people with MND. 


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