26/05/13 - Financial Challenges

Raising a cleft-affected child doesn't come cheap. When you first get the diagnosis everyone tells you "don't worry, we have a great healthcare system, you won't have to pay anything" but it's not really true. Sure, we're blessed to live in a country that offers free hospital care to everyone, so we don't have to make the gut wrenching decision of whether or not to terminate like they do in places like the United States, but there are still a load of unexpected out of pocket costs that Medicare don't cover.

The most obvious cost of course is feeding equipment. So far, almost five months in to this journey, we've spent over $100 on bottles. Yes, you could easily spend that on regular bottles if you wanted to, but I bet you'd have more than the three bottles that we have. All up our equipment costs - bottles, splints, and syringes - have come to $166. We have private health insurance that claims to pay for essential medical equipment, but they don't classify any of this as essential. Apparently we could have opted to use a nasal gastric tube for feeding which would have been supplied by the hospital free of charge. But what parent would chose that when its not necessary?

Don't be fooled in to thinking that medical treatment is covered 100% either. The truth is, if the doctor isn't in the hospital at the time you see them, then you're going to pay for the privilege. The only exception to this is Doctor Kimble, who is nice enough to bulk bill for his private visits. Not even holding a healthcare card gives you much advantage. We got a miserly $20 discount at the opthomologist. Once her teeth come through we will have dental bills to think of too, and dentists are renowned for through-the-roof prices.

Don't get me wrong, the healthcare card is a bonus, it reduces the cost of prescription medications after all. But a lot of the medications Ellie needs aren't available on a prescription, and we have to pay the full retail price. They don't come cheap either, some of the medications we've had to by have been $15 or $20 each, just for a weeks worth.

Then of course there's the cost of all the travel. Sure, the patient transport scheme rebate some of the travel costs, but only for fuel. Just the petrol alone has come to over $700, and we've only been reimbursed $300. Then there's parking, at $25 a day, and meals. Thank god for Ronald McDonald House for free accommodation. I can't imagine how we would ever afford the trips if we were paying for somewhere to stay.

But the biggest financial cost has to be lost income. And there's no reimbursement for that. Every time we need to go to an appointment, or to Hobart for surgery, Drew needs to take time of work. He doesn't get sick leave or annual leave because he's casual, so we simply have to go without if he's not working. The total cost of this? $5800. That's a small fortune to us.

If you ask centrelink, a cleft affected baby is not high-needs enough to qualify for a disability payment. I challenge them to live our life though and then say that. I challenge them to raise my babies on the tiny income we have, when so much goes towards Ellie's care. They say go and get a job, but I doubt any employer would be too happy with me having 33 sick days in four months. 

The funny thing is, they pay 100% child are benefit for Sophie, because her sister has high needs. But when it comes to financial support, she doesn't have high needs. Work that out.

Of course, we wouldn't change Ellie for the world. We love her, and we'll do what ever it takes, spread as much as it takes, to get her the treatment she needs. But it shouldn't have to be this hard.