Managing a Family Budget as a Parent of a Child with a Disability

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The family budget:
Today I invited Heather Cox, to share some of her tips and tricks.

Heather & Arianna Cox

Heather is Mum to two beautiful girls, including Ari who has Sotos Syndrome a rare genetic condition. She started Arianna’s Army and is one of the founding members of the Sotos Syndrome Australasia Association.

Managing a family budget with a child with special needs has a unique challenges – and costs – to overcome.

Heather has been kind enough to share some of these tips with her Facebook community and I thought it would helpful to share them here too.

From Heather:

When many of us become a parent, we don’t expect to become a parent of a child with a disability.

It can be overwhelming initially when we receive a diagnosis, or in many cases, no diagnosis but a knowledge that your child has delays or a disability.

We are suddenly thrown into a world of speech therapy, occupational therapy, physical therapy.

Therapies we may never have heard of, in addition to the many Drs appointments many of us also have.

Plus, with all these appointments in the diary, often one partner has to change their working arrangements.

This might mean managing a part-time role, or not working at all for a number of years whilst taking the child to therapies. It’s not easy.

The family budget is always affected.

This means a reduced income with extra expenses, petrol and parking, specialist Dr fees (In some cases there is no public option).

Add to this the admin and management of the NDIS budget – It’s a lot.

We need to put a lot of hats on, therapist, nurse and be well versed in family budgeting.

When I started out on this journey, I found myself drowning in expenses. I spent a fortune on hospital parking whilst my daughter was in NICU (thankfully they have improved this a bit). 

I had to give up my 60+ hours a week, well paid Marketing Manager role in Telco, I couldn’t make it work with the knowledge my daughter might need to be sent to the emergency room at any time.

And she was.

It wasn’t going to work.

You find ways to adjust

Initially with the increased costs and reduced income I thought we were going to lose the house.

It was tough.

But as they say, I became tougher.

I started to adjust to the new normal and I wanted to share a few things that helped me and still help me make things meet, so we can meet our child’s needs.

Find a part-time or flexible role

Maybe easier said than done, but for me it was possible as I reached out to my contacts.

Yes, I had to sacrifice the high-end salary and change the course of my career.

But I am still in marketing, gaining skills for my future and I have hopes of joining the work-force full-time again when my  daughter is at school.

I keep my skills relevant and up to date, which is vital in marketing.

Do a monthly Family Budget

This has helped us make ends meet.

I have a line item for every expense category, including one for incoming NDIS fees and outgoing. I plan manage, so the money comes out of my bank account, but I make sure at the end of the month, the same amount is coming in!

There are some great free tools available including https://moneysmart.gov.au/budgeting/budget-planner where you just plug in your expenses.

It lists the common ones to get you started.

Budget for your NDIS

I have a giant excel doc which lists each therapy down one side, the dates in the next column for the full plan, the fees and the totals.

This way I don’t get caught out at the end of the plan having run out of money! (Admission: I got caught out once, so learnt the hard way and now this excel is my lifesaver).

There is a column where I put the NDIS reference number, when it is submitted, that way I always keep track of what I have submitted for a refund and what I haven’t yet.

I aim to submit them weekly on a Friday, but I admit to having gone 2 weeks sometimes without submitting them.

But with my excel tracking, l easily pick-up where I left off. It also means if I get the chance to try a new therapy, say music therapy, I know what I need to allocate, or drop, to make sure we still meet the budget.

When it comes to NDIS review time, I know better how much I need and what it will be used for.

Equipment

It might be cheaper for the NDIS to pay for everything, and most of the time I recommend asking them, but the time it takes to get things approved, you can be waiting a long time.

Instead sometimes it is easier in the short-term, to follow some of the buy/swap/sell Facebook Disability Equipment pages.

I got a free supportive stroller from one! I will be going back for a modified bike soon for my daughter….

Parking

If you are eligible for a Disability Parking Permit, get one and use it!

Did you know in some states like NSW, you get to park longer in some of the timed spots (30 minute spots for example.) You can also park for free in council metered parking (Not private parking, so don’t get caught out!).

I paid for council parking for years before I knew I didn’t have to!

We have lots of extra expenses, so enjoy this one.

Check out the rules in your state.

Spend money on what you enjoy

This is a general rule for all parents.

No amount or % of your family budget is wrong if you can afford it.

If you want to spend 50% of your income on coffee, go for it – just do it knowingly and consciously.

Doing your family budget monthly helps you know where your money goes. When you take out what you have to pay, like water, rates etc. you know what you have left over and can choose.

We for example are foodie. So we spend a lot on quality food – but we don’t spend much on shopping otherwise.

This is just our thing, so we enjoy it.

Others may not value good cheese like we do and want to spend it instead on a holiday.

It’s not right or wrong, if it is budgeted for and you get enjoyment from it.

Watch out for the many things which give you short term enjoyment, but you may get remorse for later!

I am no financial expert by any means.

Just a mum managing a family budget with a few extras.

These few tips have helped us in a small way get back on track. To keep our house and kept us from money being a constant worry. 

Now we have our budgeting routine in place. Which we review at the beginning of the month, for the last month.

So we don’t get so many nasty financial surprises and can put our mental energy into other more satisfying things! Like spending it 😊

Thank you Heather

It is always great to hear another way that is working from a different perspective.

I also shared my tips for saving money cooking while in and out of hospital, cooking in hospital, money management, relocating for our family & preparing financially for a funeral.

So check those out, take notes from Heather and the links she shared as well as our resources.

I find that my family budget has been slowly created by getting nuggets from many different places.

Oh and share your tips here with us too!

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