Tuesday, August 21, 2012

The ACA and you.

How has the Affordable Care Act impacted you? Details, please, the more the better. I had that conversation last week with a research team doing a study on this very thing. How does the implementation of the ACA impact families, does it? For the better? Why? 
That’s a trickier question then it seems. Of COURSE it impacts my family, but it's more of a big picture thing. The pre-existing condition clause is huge for us. The knowledge that Henry won't get denied coverage based on his health history, that even if we something happened to affect our employer sponsored health insurance, he would be ok. But is that enough? Is that a compelling story? That's the same story as every other kid with a pre-existing condition. What else is there about us...about how the ACA helps us?  

Well.... let me think. And that's where I landed. Thinking. See that's the thing, I accept my private health insurance, I pay the premiums and assume when they deny me coverage for something it's because it's not really that important, or a necessary part of my health care. But, and you see where I'm going with this, what gives them the right, my INSURER the right to determine what is a necessary part of our health care?  In particular, Henry has been repeatedly denied coverage for Physical Therapy and Occupational Therapy because they are "developmental" and not related to a particular injury. "Good news" I said when I met with their appeals board, he did have an injury, he had a stroke. Because his stroke was in utero, it's considered congenital, so any therapy related to that injury would be "developmental".  Ah.  Clear as mud.  "But our Primary Care doctor prescribes us to see a PT and OT, and the CP clinic and Gait clinics we attend are all covered by insurance, just not the actual therapist visits?" Yep. Denial of appeal letter appeared in my mailbox the next day, though they still did accept the premium payment in my next paycheck. 

And this is where the ACA could really change things. Right now, states are deciding what their minimum level of coverage will be when the ACA kicks in. They’ll determine coverage for many areas of treatment, from preventative to palliative, but what matters to us, each state will set their own definitions for the minimum coverage requirements for rehabilitative services like OT and PT and whether they’ll be required to cover developmental services. It’s the state legislators that will actually decide, on a state by state basis, what the ACA will mean for their state. And this is where you can make a difference. As this process goes forward, there will be countless meetings held, presumably behind closed doors, where this coverage is hammered out, and that's when it will be critical that your legislators understand what your needs are and why.  The implementation of the ACA could force my private insurer to start covering what my doctor tells them is a necessary part of Henry's healthcare. Finally. 

And that's the thing with the ACA. It's so big, and so much of it is getting rolled out a section at a time, and then some of it is getting implemented by the states and some by the federal government and there's a whole lot of misinformation getting thrown around. So people take the nugget that pertains to them, cling to it, and either love or hate the ACA because of that nugget. And I'm no different, I preach the benefits of the pre-existing condition clause to anyone who stops long enough to listen. But because I'm so focused on that nugget, I don't see the rest of the treasure. Elimination of annual and lifetime coverage limits of benefits (critical to a person with a lifetime of medical needs before them). Young adults having the option to stay on their parents health insurance until they are 25 (more than 25% of working age persons with disabilities are living in poverty). Health insurance companies that are required to spend your premium dollars on healthcare and not on their profit margin (um... yeah, I'm pretty sure our family isn't good for anyone's profit margin). I recognize that some politicians claim Obamacare is the first step to socialized medicine, that a for-profit insurance business is the only way to keep costs competitive and that just doesn't make sense to me. That clearly didn't work. So why keep doing the same thing? 

I'm excited to learn more about what the ACA can do for our family, and more importantly, how I can help impact that on a state level through advocacy and education. I look forward to that journey, and to sharing it with you every step of the way.  

Hug your kids/partner/pet and have a great night, 


Thursday, August 9, 2012

The asterisk

I have this thing. The unspoken asterisk that I often add to people's commentary. The things I think they are saying in their head but would never utter outloud because they don't want to hurt my feelings.

"Wow, you ran a half-marathon? Congratulations that's quite an accomplishment." (*: for a chunky monkey like yourself)

"Knitting? Yoga? Running? Dance class? Where do you find the time?" (*:clearly at the expense of quality time with your family)

"How in the world did you end up at APT?" (*:clearly they could have hired someone vastly more educated and well suited than you)

And that's the thing. That asterisk just lives in my head. I don't actually believe it. And I've gotten MUCH better at ignoring it or even eliminating it in some cases (in my career, for example, I'm confident and good at my job), but at some level it's always there. But it's always just been about me. It's my short-comings, I absolutely don't add the asterisk to others, it's just been about me.

Monday we had a doctor's appointment where that damn asterisk was applied to my son. MY SON. He aged out of birth to three in February where he was getting PT and OT weekly. At that time, he enrolled in the Early Childhood program at Spring Green Elementary and was evaluated as not qualifying for PT but he received OT twice a week. But school, and therapy, ended in May. About 10 weeks ago. Now, let's be clear. Aaron and I do regular therapy with Henry. We use his constraint cast and he gets ipad time, we stretch regularly, work on his core strength and balance and he's constantly active. Pedalling his bicycle with two feet, pushing his favorite shopping cart with two hands, working on building those neural connections through countless everyday activities. What we don't do is have a regular weekly session with a PT or OT. And why don't we do that you may be asking yourself? Clearly that's something we should be doing. Our insurance provider disagrees with that though, and deems PT and OT as "Developmental" therapy which isn't covered by our policy. They do cover PT or OT related to an injury, but since Henry's stroke was in-utero, it's considered congenital and not an actual "injury" that they can treat. So we haven't had therapy for the summer, like countless other families who rely on the school district for their services, we do what we can, and hope we don't regress too much over the summer.

Monday's evaluation had our (very competent) doctor (whom we love) tell me that "All things considered, he's not doing too bad. I mean, you haven't been in therapy, and the purpose of the evaluation is to see how he's progressed from therapy, so we can't expect to have a great evaluation. You're doing the best you can though, considering." 

I beg to differ, madam. Henry is not only doing "not too bad", he's freaking amazing. He's running and jumping and skipping and dancing and giving high fives and swimming on his own. He's bossing us all around with his mad verbal skills, and sleeping in his own bed and thinking about pooping on the potty and is laying the groundwork to someday rule the world. That's how Henry is doing. There's no asterisk anywhere near him, so take it out of your medical write up. We're not just doing "the best we can with what we have", we're doing a damn good job of raising two amazing little people. So get that asterisk away from my son.

In her defense, she was talking out loud to try and figure out how to write an order for OT and PT that insurance would cover. Ultimately she went with a "Pre-Botox evaluation and treatment" and "Post-Botox evaluation and treatment" order that should at least get us through the end of the year. But I left deflated, feeling like I had missed an opportunity and my son was paying the price. And I don't know how to change that. I don't know how to convey to insurance providers the value of Developmental therapy in a toddler's life. I appealed their denial of coverage and met with their board, shared my story, gave it all I had really, and they still said no. I wonder if the ACA will change those requirements, if they'll be forced to cover these essential therapies. Medicaid covers them, but most private insurers don't. And if Henry were on Medicaid, his therapy through the Birth to Three program would have been covered. (Note: In spite of not being covered by our insurance provider we still received services, the county paid for them though because our household income was too low for a cost-share--that's only available as an option until the child turns 3). I'm eager to see the ACA implemented fully, and have private insurers meet the same standards of coverage that Medicaid has provided for decades.

Until then, I'll continue to battle that damn asterisk. To work constantly to get Henry to be competitive with his typically developing peers, to make progress, to communicate effectively his heart's desires, to poop on the potty. And when the day comes when insurance providers actually cover the therapies we need, well, we'll just have more people on our team to help with this journey. 

Hug your kids/partner/pets, and kiss the asterisk goodbye.


Thursday, August 2, 2012

That's just how I roll.

The Chick-Fil-A controversy is really interesting to me, and gives me great hope. Hope, yes, I think that's how I'll describe it anyway, but for most of my life, when the same idea has been snidely tossed my way, it may be more aptly described as "self-righteous". At least that's what I've been told. I've had the one-person boycott going for years you see.  Pepsi launched an offensive ad campaign, I wrote letters and stopped drinking Pepsi for FIFTEEN YEARS. I only really started drinking Pepsi because my brother was their HR Mgr for a while and now it's all I can get at work, but a good decade and a half Pepsi free because of an ad campaign where a computer generated mosquito landed on a can of Pepsi and launched into the Rolling Stones' hit Brown Sugar. Yep. It's a really offensive song to today's sensibilities, but apparently was originally written as a satirical statement about the civil rights movement of the 60's. I felt that reintroducing the song in a different political climate was naive and dangerous for Pepsi to do, I told them, they sent me a coupon for free Pepsi, which I still have. Now, let me be clear. I'm not African American. I wasn't around in the 60's, and have very little opinion about that era's British rockers. By anyone's definition, I didn't have a dog in that fight. I'm human though. And as a human I was deeply shocked and offended by a company's marketing decisions, and I reacted the only way I knew how--I stopped supporting their business. And, yes, that included Taco Bell, KFC and Pizza Hut since they were owned by Pepsi's affiliate Yum! brand, and when a restaurant only offered Pepsi, I ordered water. I was outspoken and a bit insufferable. It's what I do. 

When I fell in love with Aaron, one of the reasons was that he too had a list of companies that he just wouldn't support. (Many of you may be familiar with our Disney-free household...or at least it was Disney free until Henry showed up!). So, when I told him we needed to switch our life insurance because Knights of Columbus were sexist and homophobic, he was totally on board. We don't shop at Walmart because of their inequitable treatment of women. We do support Culver's because they are a strong family centric company that respect and include families of all types. We put our money where our mouths are and always have.

Now, full disclosure, the "money" in question is not substantial, our monthly grocery budget is not being missed by Walmart, and I'm sure Pepsi didn't notice a dip in sales by my 15 year hiatus. But, life is all about choices, and when a corporation makes a decision that personally makes me sick to my stomach, what other choice do we have? So I'm applauding the movement to boycott Chick-Fil-A. I applaud the movement to speak with our pocketbooks, always, and support those whom you deem worthy of support. There's no reason to wait to vote until November every other year, you can cast your vote as a consumer thousands of times in that time frame. Some call it my soapbox, or call me combative and self-righteous. I think those are probably not too far off the mark. I am not the girl who doesn't say something when the guy at the next table makes an offensive remark. I'm not the girl who lets a good waffle fry trump the relationships I have with family and friends who are being written off because of whom they love. I'm not the girl who looks the other way because it's not my battle to fight. I'm just not. I never will be. Love me or leave me, that's just how I roll.

Hug your kids/partner/pet, and today try to support a business that supports something you care about. And tomorrow too, and how about the day after that...