Insurance

Take a Deep Breath

by Mary on March 29, 2011

A goodly amount of crap has happened in the Flashlight household since the end of last year. A lot of time, I’ve just been paralyzed by the drama. Now that it seems to be (mostly) resolved, I may be able to write coherently about it.

Back when I was in the hospital in November/December, one of the things they told me was that they “caught sight of something in my lung” when they did the scan of my abdomen. “Probably nothing,” they said. “We’ll check it again in four months.” Cue me, worrying. Because we’ve certainly been told “probably nothing” about other issues that have turned out to be Something.

Also, when the IV pole fell on me, it caused a deep muscle bruise on my left shoulder. I’m left-handed, and I carry the kids in my left arm. No strain there. I also managed to catch my foot trying to step over a baby gate, and fell… onto that arm. “Probably a torn rotator cuff. Probably needs physical therapy.”

During the winter break, we finally got notification that we could get some other “out of school” help/therapy for the J-man, because for a while now, home time has been difficult. Number of therapy visits are dependent on my health insurance.

Then, in the beginning of January, my team at TCTSNBN was informed that layoffs were coming. We got 2 weeks to stress about whether we were chosen, and then those who were chosen were told. I was one of the chosen. No stress there, right? I mean, I’m just the primary breadwinner AND the holder of health insurance. Not like I could need either of those things!

TCTSNBN, in their infinite wisdom of this round of layoffs (and this round for my team involved THIRTY PERCENT of our US based employees), gave us 60 days on payroll to find another job within the company – or without the company, but 60 days either way before severance kicked in. The severance package was also pretty good, but GAH – health insurance!

I immediately sent individual emails to everyone I’d ever worked for within the company – or even people I peripherally worked for. I readied my resume over that first weekend, and eventually applied for 48 different jobs within the company. I had some immediate rejections (always good when a script tells you “Not Qualified”) but also a good number of “Resume Forwarded to Hiring Manager” replies. One of those jobs was one I probably wouldn’t have applied for because I didn’t really meet the written qualifications, but one of my contacts had sent my resume to the hiring manager, who asked me to apply.

There followed a round of interviews – many of which stopped after the first question of “Why do you want to relocate to random-very-cold-Midwest-city?” – and an interview with the hiring manager who had asked me to apply. THAT one went very well, and at times I felt like I was interviewing the manager instead of the other way around. I felt pretty confident, but it was OVER A MONTH after that interview before I got an official offer letter… and only 6 days before I would have gone off-payroll. Whew!

I started physical therapy 2 weeks ago, because my shoulder had gotten so bad that I couldn’t take a deep breath without wincing. The J-man’s getting 12 hours a week of developmental therapy, at our home, and the lady is awesome with a side of awesomesauce. I had my 4-month follow-up CT scan, and the place in my lung is actually getting smaller.

Included in the results was the comment that the bilateral atelectasis (essentially, it means I couldn’t take a deep breath, probably from the pain) noted before was now resolved.

Resolved indeed. Deep breath in. Deep breath out.

{ 5 comments }

Sensory Processing Disorder and the DSM-V – Call to Action (Urgent Update!)

by Tim on April 9, 2010

[Urgent Update! The deadline to submit comments about Sensory Processing Disorder (SPD) for the DSM-V is Tuesday, April 20, 2010. If you haven't yet done so, please send your comments very soon! This is not only critically important for autistic children and adults but for all people who struggle with sensory challenges. Make this part of how you observe Autism Awareness Month. See below for the background information I posted last month on this issue and how you can submit your comments to the right place.]

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

{ 2 comments }

Sensory Processing Disorder and the DSM-V – Call to Action

by Tim on March 15, 2010

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

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Flexible Spending Accounts – How to Make Autism Expenses Hurt Less

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…]

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The Cost to Raise a Child and Yet More Autism Disparity

by Tim on August 5, 2009

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.

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Autism, Medical Expenses, and Tax Time in Our Family

by Tim on March 2, 2009

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.

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Mental Health Gets Bailed Out Too! And Disability Rights Activists Get a Two-Fer!

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 [...]

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Survived the dentist!

June 11, 2008

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, [...]

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