Ausnew Home Care | Pay Day with Elly Desmarchelier: 'Paying my disability tax is no mean feat'

Pay Day with Elly Desmarchelier: 'Paying my disability tax is no mean feat'

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It's Pay Day! The ABC's new column where we ask Australians the money questions we don't like to talk about. We aim to demystify personal finance and normalise conversations about what we earn and how we save it — or spend it.

Elly Desmarchelier is a disability rights advocate, writer and public speaker who through her advocacy is determined to create positive change for the 1 in 5 Australians with a disability.

For Pay Day, Elly shares her salary sacrifice regrets, a Mad Men-inspired furniture investment she stands by, and sheds light on the financial impact of living with a disability. 

How would you describe your financial situation right now?

I am extremely fortunate that I make enough money to live very comfortably while also being able to work for myself.

Of course when you make your money off project work or speaking engagements like I do, there's always the risk people will just stop hiring you, so there's a constant balance between building a strong, sustainable business while also doing day-to-day work.

How was money spoken about in your house growing up?

When I was very young we didn't have much money, so it was always a topic that caused stress and anxiety in our house. Were we going to pay the rent or the electricity bill? Often we couldn't make both work. But even with very little, my brother and I never missed out on the important things we wanted — playing basketball, swimming lessons and school excursions. My parents somehow prioritised these things above all else.

When I was in my teens, my mum went back to university, studied law and then got a well-paying and stable job in the public service. This completely changed the way our family felt about money. What I learnt from this class transition — going from poor to upper-middle class — was that money comes and goes.

What did you spend your first pay cheque on?

I can't remember my first pay cheque, but I clearly remember when I lost my first election as a staffer I received a payout because I lost my job on the spot. I was 18 years old and moving out of home, so I needed so many practical things like a couch and a fridge — but no, I bought the most beautiful 1960s mid-century Danish sideboard because I had an autistic obsession with Danish design (thanks Mad Men!), so it had to be mine.

It's designed to be a bar, but in a very ironic disabled person move it's now my medicine cabinet! The most fabulous medicine cabinet you'll ever see.

a brown danish sideboard with plants and photo albums on top, with art work on the wall above.
When Elly lost her job she splurged on a Danish sideboard (which now acts as her medicine cupboard).(Supplied: Elly Desmarchelier)

About how much of your income goes towards your rent or mortgage each week?

I live in supported disability accommodation that I access under the National Disability Insurance Scheme (NDIS).

What this means is that I live in a unit that has special modifications that make it accessible for me to live in.

For example: I can use my wheelchair and get through wider doors, benches are at the right height and my front door is automated. The rent I pay is around 25 per cent of my income. This has been a game changer for me — to access my house and particularly my bathroom independently. For years I lived in inaccessible housing that was unsafe, expensive and isolated me from the rest of the community.

But let's remember that as of 2022, around 10 per cent of people with disability have access to the NDIS, and most still have to compete in the rental market and find an accessible house — it's almost an impossible mission.

a black labrador looks up at elly in her wheelchair as they move outside her apartment
Living in supported disability accommodation with her dog Spencer has been a game-changer for Elly. (Supplied: Elly Desmarchelier)

What has been your biggest financial disaster?

I salary sacrificed a car through my work. In a series of unfortunate events, I became extremely unwell, so had to leave my job. As per the salary sacrifice contract (that I clearly didn't read in full) it became a personal loan with a bank I would never choose.

Because I was so unwell I was distracted, but months later discovered the interest was over 18 per cent. To make matters worse, my partner who drove the car (I can't drive) and I split up shortly later, so I was left with a huge loan with massive interest and a car I couldn't drive or sell. It was a nightmare.

For me, there were two lessons in this — firstly, read the damn contract and understand what happens if the worst strikes. Secondly, and most importantly as a disabled person, you constantly have to be planning for the possibility that you will become unwell. It's just my reality. I wouldn't salary sacrifice something as large as a car again for that exact reason.

What's your guilty splurge?

In a lot of ways my guilty pleasures and splurges are things that are practical — let me introduce you to the disability tax. 

Let's start with food. I order out a lot. It sounds like a luxury but it's a necessity. By the end of the day my body is done and my disability makes simple cooking tasks like cutting and even getting things out of the cupboard almost impossible. Making a meal is simply not an option for me. I rely a lot on food delivery services, which are expensive.

Next is medication and health. On average my pharmacy bill is $300 per fortnight. I spend over $1,500 a month to see my doctors (medical support is not funded by the NDIS) and tests average around $300 a month. It's expensive being a sick person.

a woman with red short hair is reading quietly in a hospital bed
Elly says it's expensive being a sick person, with medical costs that can be well over $2,000 per month. (Supplied: Elly Desmarchelier)

But we're not done yet — when you're in a wheelchair and can't drive, your only option is a maxi-taxi and they're expensive. It costs $20 just to get into the taxi, before you've moved an inch.

It's the things you don't think about too: my electricity bill is higher because of a need to maintain my temperature regulation; I can't wash my own hair and don't feel like having someone in the shower with me every day, so I pay to have my hair washed and dried; I can't reach or move my toes, so a pedicure becomes a necessity for safety reasons.

While I love streaming, my ADHD means that I never remember to put on hold or stop any ongoing fees that I may have begun.

These are just a few examples — depending on your health, your disability type and your support network, the disability tax can vary greatly.

Don't get me wrong, I am extremely privileged to be able to pay the tax, but 45 per cent of people with a disability live in poverty and simply go without.

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