So my Money Circle article this week is about Health Insurance and why we don’t have it. I wanted to expand a bit on this for you here. Which may end up less “expanded” and more “whingey” but what’s the use of a blog if you can’t complain about disability now and then?
Go read it and come back, okay?
Stop reading here.
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All up to date? Awesome.
Last week, Amy had an appointment with an Occupational Therapist at St Giles – the public health system’s answer to quirky and disabled children needing therapy. They’re awesome in there and we’re big fans.
Eve’s physiotherapist had referred Amy through after listening to us talk about some of the problems Amy was having at school. I wasn’t sure what to expect to be honest, certainly not answers immediately. After all, who gets answers straight away? That sounds like a normal person thing to happen.
Amy is struggling with writing at school because her hand isn’t strong enough to hold a pencil for more than a few minutes at a time. Her hand fatigues quickly, collapses a bit, and then fatigue travels through the rest of her body until she is barely managing to complete any handwritten work at all.
She’s smart, but memory only works so far when you’re too tired to complete your worksheets and journal writing.
Recommendations have been made for the school to follow through on. Things like a slope desk, weighted pencils and a Department of Education supplied notebook computer. Amy will learn better if she’s typing out her answers and her news writing, rather than spending that time hurting herself trying to write with a pencil.
These things are yet to be implemented, but I’m not sure it would be happening if we had private health insurance. Leaving aside the nightmare that is pre-existing conditions, most health insurers only offer a small amount of OT support a year. On the fund which seemed most likely to be affordable if I find and keep some regular freelance gigs, I was able to access $300 OT a year for two people, capped at $600. Now I might be misreading how therapy is covered, but it seemed to me like a lot of therapies we access aren’t considered very necessary to health insurers.
Sure, if we break a leg, it would be awesome. But for long term degenerative disabilities, which need supportive care, plus extra medical care? It’s not feasible.
Amy is going to start OT at the end of the month, going once a week for a month when we’ll reassess how much help she needs.
Evelyn sees a physiotherapist, a dietician, a paediatrician, a GP, a neurologist, an ophthalmologist and an audiologist. Some of these things are covered and some are not.
Disability is a hard thing. Not only does it impact every part of your life, but often it impacts your ability to earn money. Once your earning ability diminishes, your quality of life does too, because where is the money coming from? Basics are covered, but other things, things that make life easier like stair lifts and hand rails and dietary needs, those are the things you have to decide whether you really need them.
Evelyn is developing a range of allergies and intolerances and we’re basically on a Paleo diet right now, except without nightshades or strawberries, and with rice.
Gluten makes her sick (we’re going to be checking if it’s just wheat, or gluten as a whole, as soon as we can), dairy makes her vomit. Nightshades give her hives, so do strawberries. We’re down to only fresh produce, and expensive ingredients.
I’m not sure about you, but fresh food is awesome. It’s also expensive, doesn’t last as long as pantry staples and takes more preparation than a bowl of two minute noodles. When I have to plan every single meal to make sure Eve is getting enough nutrients from her food, rather than just handing her crackers and cheese at snack time, I start to get exhausted and broke.
There’s only so much apple sauce a toddler will eat before she’s bored and screaming.
Because apples are cheap and artisan coconut flour and almond meal to make toddler friendly paleo blueberry muffins are not.
Disability is a multi-faceted thing. I think people like to imagine disability in terms of wheelchairs. Without a wheelchair, you’re just putting it on. No matter that wheelchairs are probably in our future. When you think of disability and working, no one takes into account things like pain, exhaustion, joint fatigue, muscle spasms, dislocations, blood pressure issues, heart palpitations, fainting, vomiting, nausea, etc etc. You get the idea.
My form of disability means I cannot work in a regular job, even if I was in a wheelchair, because I need to spend so much time in a prone position between bouts of doing things like preparing a paleo lunch no one will eat.
Without a regular job, there isn’t regular income and no way to pay for the health insurance that people assume I should have, because as a disabled woman who gave birth to disabled children, I ought to be ashamed of using the public system, can’t I see what a drain, a strain we are on the system?
Like I said, complex.
We’re lucky, we have options open to us. We’re in the process of opening a soap making business. Our future, financially, looks brighter than it had been.
But other people are not in the same boat, and that’s rough.
Health insurance is complicated. Disability is complicated.
And that’s the real story.