by Tim on October 15, 2009
[Note - If you don't live in the U.S., your only reason to care about this post is probably to satisfy your morbid curiosity about health insurance in our country. It's best that I stop here before I go into an uncontrollable rant about that...]
For a lot of us Americans, it’s that fun time of year when Fall arrives, the temperatures cool, in many areas the leaves turn, and we sit down to try to decipher what our health insurance ‘options’ are for the coming year. Around October is when many companies hold their annual period where employees can pick, among other things, their health insurance plan for the next calendar year. Whether it’s called “Open Enrollment”, the “Election Period” or some other dorky term, the idea is the same – except for birth, death, or marriage, you can only change your insurance plan once a year with your employer, and during this period is the time to do it.
[Note - One other exception is that when you start a new job that actually offers benefits, you can do all this then too, regardless of what time of year it falls.]
Assuming you have any choice at all, you’ll spend quite a bit of time trying to unravel what the various plans claim they’ll cover you for, all while knowing full well that you’re paying your premiums in the shaky hopes that they’ll pay any claims at all should you commit the sin of actually getting sick. [insert additional sarcasm here] Eventually you may end up just throwing a dart at the wall and picking whichever plan it lands on.
But usually buried down in all that benefits stuff is one gold nugget that every parent of an autistic child should very strongly consider getting – a flexible spending account.
[click to continue…]
I saw the results of a study this morning that gave the total cost of raising a child (in our lingo, a neurotypical child) into adulthood. Let’s compare that to the cost given by a Harvard study a couple of years ago on the cost to raise an autistic child into adulthood.
Average cost of raising a neurotypical child – $290,000
Average cost of raising an autistic child – $3,200,000
But wait! The mathematically astute among you will notice that the second amount doesn’t quite add up logically. Not many people even make that much in income over 18 years. A chunk of that is because health care and educational expenses are factored into that number regardless of who pays for it (parents, insurers, Medicaid, local schools, states, etc.), but there’s another big chunk that most no one – other than parents with autistic kids -thinks about.
In many families with autistic children, one of the parents reduces their work hours or stops working altogether in order to care for their child, learn all the therapies, be their advocate, etc. I freelance when I have time, but my net revenue per year is maybe 20-25% of what I would get paid to work full-time in the corporate world.
The reality for me is that I took a 75-80% pay cut to take the greatest job in the world – being the stay-at-home dad for two awesome kids. But there’s another reality. Until there is greater access to care and serious health care and education reform in the U.S., the financial costs of all this will continue to grow more and more rapidly. So far, we’ve been lucky. I know of plenty of families on the verge of drowning.
But the J-Man is neither a statistic nor a dollar amount. If we had to sell our last pair of shoes, we’d do it. The moral of the story is, no one should have to.
OK, so we’re still slogging through taxes. We figured out today – thanks to our family accountant – what we have to clear on total medical expenses for the year in order to be able to start deducting them from our taxes. I never thought we’d ever be eligible for that deduction given how high that threshold often is; I figured it was a long-shot at best. We put $5,000 in our flexible spending account last year (EVERY family with an autistic child should have one of those), drained it in four months, and then paid out of pocket for the rest. But I still didn’t realize just how much we’d spent.
FYI – If your total medical expenses for 2008 exceed 7.5% of your adjusted gross income (any money you paid into a flexible spending account doesn’t count since you already don’t pay tax on it), you can start deducting your expenses above that amount. What qualifies as a deductible medical expense? The things you’d expect (doctor visit co-pays, etc.), but there’s also lots of stuff you’d never imagine, like over-the-counter drugs and contact lens solution. Read Publication 502 from the IRS. Learn it, love it. You may also want to download this expense guide from one of the larger flexible spending account administrators in the U.S. It’s helpful too as it goes into more detail than the IRS document.
Anyway, we’re still not done tallying all this up, but all of our eligible medical expenses plus our insurance premiums (which by the way aren’t deductible if they come out of your paycheck pre-tax), so far come to a frightening number.
Over $14,000.
And you know, as far as parents with autistic children go, I’ve heard of people spending way more than that a year. We have decent enough insurance compared to some other people we know, too. It could be much worse. This does include medical expenses for Mary and I, but we can only forgo so much medical care to accommodate what we have to pay for him. We still do have to go ourselves sometimes.
I think we got that 7.5% threshold covered. Sigh.
And if you don’t think health insurance and health care reform is critical to the future of the United States, come over here and let me smack you in the head.
But you know, we’d do it all over again and again for him because that’s what we have to do. He’s worth every bit of it and infinitely more. But the thing is, we shouldn’t have to run up our credit cards or take money out of our homes to pay for all this. None of us should. Our children deserve better, and it’s time we find better ways to give it to them.
by Tim on October 3, 2008
OK, I wasn’t planning on posting again until the blog redesign is done (which should be in the next day or two) and we can issue forth a whole exciting deluge of revelations and great excitement. But this was too good to not post.
While I think the whole bailout bonanza in Congress is too depressing for words (someone likened it to choosing between a steaming pile of dung and a pack of ravenous, rabid, pissed off tigers), there’s something worth celebrating in it regardless.
In among the pork about tax breaks for manufacturers of Legolas arrow shafts and people who get drunk off rum from Puerto Rico (actual details may vary slightly from my recollection), somebody put in something worth grabbing some of that rum over.
The Paul Wellstone and Pete Domenici Mental Health Parity & Addiction Equity Act of 2008 was amended to the bailout package and is now law. I nearly wet myself when I read that.
From the Chicago Tribune article:
The law doesn’t require health insurers to cover mental health care. But if they do, they’ll have to treat psychological and addictive disorders just as they do other medical conditions.
What does that mean for us? Since health insurers have been dodging autism coverage by categorizing it as behavioral/mental health/etc., then deciding how best to not cover it from there, and leaving us to drown in debt, that scam appears to be over.
We’ll be sorting through the actual, real-life implications of this bill for a while, but what a major victory it is for millions of Americans that this is now law.
As if that wasn’t good enough news, the ADA Amendments Act (ADAAA) (best link I could find on short notice) was signed into law a few days ago. Spelled out, all those letters mean Americans with Disabilities Act Amendment Act (God help us if they have to amend it again). This restores much of the power of the original ADA laws that were gutted over time by the Supreme Court, which amounted to permitting large amounts of “up yourses” toward people who only wanted to be able to work and contribute to society and live with some dignity. The implications of this are far-reaching and will also take a lot of time to fully understand.
So now when I think of J-Man growing up and becoming an adult – assuming the ADAAA isn’t gutted again at some point – if he still faces a lot of challenges then, he will still have opportunities for work and making the world a better place that he might not have had without these protections. Our kids may be young and we may live solely in the moment, but it’s never too early to fight for their long-term future.
At least some sliver of government works. They may be suck-tastic much of the time, but they also brought us things like IDEA along with ADA and Mental Health Parity that literally make an unfathomable difference in our children’s lives.
OK. Back to working on the revolution.
We got through it. Anything that can be described like that is a victory.
The dentist was really good. Turns out his wife used to work for the doctor who did the autism evaluation, hence the referral I assume. Regardless, he was calm, skilled, listened to us, understood the situation perfectly, and best of all, was quick. Can’t beat that!
I rarely drop the word “autism” into a conversation with a stranger about our son unless the conversation is actually about that. People’s automatic prejudices about that really get to me and only serve to piss me off, and if he’s acting a bit destructively – which is rare – I don’t want to be one of those parents who makes excuses for their kids. If I’ve heard “Oh, he’s just that way; he has ADD” while their child is rampaging around the playground knocking kids down and taking stuff from them, I’ve heard it a thousand times. I don’t care if J-Man is autistic or purple; I want to have the same boundaries and rules and expectations that I hope other parents have for their own.
He jogged laps around the waiting room and entertained everyone. He did many of his usual array of things others may find quirky, but since I find them endearing, I had a great time watching him. There was a ramp into the kids’ play area that he would take a step up, change his mind, and come back down. He did this at least two dozen times. He has this thing about inclines. He’ll do steps now with some help, but put a ramp in front of him and his wires seem to get crossed sometimes. He was his usual cute self and everyone responded accordingly, with adoration of our son like they’re supposed to. 
That preamble has a point. I figured they had a “special room” at the dentist’s office somewhere. The office is enormous and there’s a fairly open area with dentists’ chairs all over the place. I knew we’d have to do some wrestling with him to get this done and I’d rather not do it in public, freak him out even more, and then freak out the other kids – many of whom were very young and a couple who looked like it was their first time at the dentist and wouldn’t understand why this boy was screaming while some large adult (namely, me) was piled on top of him. So I sprinkled “autism” in a couple of places during our initial conversation with the hygienist. We got the “special room”. I usually don’t work a conversation like this, but it turned out to make life much more manageable for everyone.
The hygienist made little headway into checking his teeth so we all waited on the dentist for a few minutes. Singing and letting him explore the common area helped him calm down and pass the time. He never sits still in a new place so we let him work off some of that until the dentist was ready. He talked to us for a few minutes about concerns we had, was very understanding, knew completely what to do, and generally made us all feel better. His usual bag of tricks (e.g. show the kid the little dental mirror and let them play with it before using it) was pretty much pointless, but I appreciate the sentiment. J-Man was in the process of going over the edge at that point.
Like everything else, the winning plan is to be quick. I sat him in my lap facing me, then we tilted him back with his head into the dentist’s lap, Mary took one arm and the hygienist the other, and the dentist worked his magic. He managed to get a good visual exam in during all the commotion. Good for him. Verdict – no problems with his teeth!
He did have some staining on his upper, front teeth, mostly because all he’ll drink is iced tea. The dentist said a little pumice on the rotating brushy thing dentists use (no clue what it’s called) would clean that right up. It would take about 30 seconds. We figured we could survive anything for that long and it would look a lot better. So, we decided to do it.
Reinforcements were waiting by the exam room door (an extra hygienist if needed). I literally laid across him (useful side effect is that deep pressure helps) to hold his body and feet, everybody grabbed an arm, and 30 seconds later, voila! He got some serious crud off. Ewww. Verdict – Stain gone, everyone survived, good enough.
J-Man recovered well (which is normal for him). I held him and walked him around for a few minutes and we sang a few rounds of Old MacDonald. By the time we got to the car, he was pretty good with life again. He was pretty subdued, but an OK kind of subdued.
Some things we learned:
- Preparation is 9/10 of everything. We tried to get mentally and logistically prepared before we even got there. We planned the whole day around it, timing meals, giving him some extra chill out time, letting him watch a little extra TV, lots of loving attention, etc. Best call of the day – put the soft shoes back on in place of the big boy shoes in case he kicked because they hurt less!
- Learn from prior meltdowns and keep trying to figure out the best way to get through something like this. Fifteen progressively worse haircuts were great lessons. Still, probably a lot more we can learn.
- Skilled, understanding professionals are worth their weight in gold. They really made it as easy as they could. Again, speed is everything.
- Ask around, get referrals, ask around some more. This is going to be stressful, shopping around for the best person is worth the time. We relied on the referral of someone we trusted and it worked out well. We will definitely be going back there.
Final financial damage – $68, and see you in six months. We’ll take it!
I claim my own sensory issues. I really don’t like dentists. I’m being very diplomatic in saying that. If J-Man takes after me, the end of the world may be nigh.
So, now we have to take him to the dentist tomorrow for the first time ever. It originally took months of therapy just to get him to let us near his mouth and to eat table food of any kind, then it took us months to get him to let us into his mouth with spoons, washcloths, etc., and then it took a while to get him to put a toothbrush in his mouth. He still fights us brushing his teeth with a brush (we usually use a textured washcloth), but he will sorta brush his own teeth with one (emphasis on ’sorta’).
So, we know his teeth need cleaning. He seems to have an overbite too. Nothing good can come of this when a dentist gets involved.
Autistic kids often have problems with their teeth, primarily because it’s hard to negotiate with a kid about dental hygiene when having someone pillaging around in their mouths when they’re sensory-sensitive anyway isn’t really on their favorite activities list. It’s not like “go get your toothbrush and brush your teeth” is a practical course of action either at this point.
Here are some other things compounding the problem.
- Our dental insurance has no pediatric dentists in network. How dumb is that? So, this is out of pocket. Great.
- I fully expect him to fight to the death in the chair. Remember, this is the kid who required five people (and me of 225 lbs practically sitting on him) plus an entertainment committee and his favorite video to sort of get his hair cut. This time some stranger is going into his mouth with shiny, sharp, scary-looking instruments. You must be joking.
- Distractions are pretty much useless with him after a certain point. Once he slides past that point of no return, ain’t nothing you can do to get him back except wrestle or take him home. In really stressful situations, honestly the distractions don’t much work regardless. It’s more how long you can delay the inevitable.
- I also fully expect them to give up and say “you’ll have to come back and we’ll need to sedate him. By the way, go ahead and leave your wallet with the receptionist.”
- I personally hate dentists. This does not give off good vibes to J-Man I’m sure.
- It never gets easy watching him go through something this hard on him. It kills me every time.
- If he has cavities, I may start drinking heavily when we get home. There’s a ‘package store’ two exits before ours.
The one good thing – the doctor comes recommended by the person who did his autism evaluation. So, let’s hope for the best.
Urf. We’ll let you know…
