Having Tess means we've had to figure a lot of stuff out for ourselves. Like, what's an IEP and what can we expect during an IEP meeting? She sees a ton of doctors and specialists, so how do we get those paid for? And if we have problems with our insurance company (which we definitely did), then what? How do we not spend all day every day fighting with them?
So I want to tell you the things that we wish we knew. It woulda been so much easier if somebody told us this stuff. Pulled us aside and said: "Hey, I did this two years ago with my kid. Whatever you do, make sure you do X." In this post I'm gonna give you two simple pieces of info that we've learned, and hopefully they'll help you.
Ok, part one: services. You think you're on your own, right? You google a ton of shit about your kid, about ways to help them, things that could make your life easier. Like you type in: "special needs services maine." But Google isn't built that way. Sure, it'll lead you to a few sites, but you can't tell who's in charge of those sites. They're hard to navigate. They don't seem like they've been updated since Bill Clinton was president. There's no events, no blog. Essentially, even after you find those sites you're where you were when you started: on your own.
But we had somebody come into our lives, and that person was way better than Google. It was Tess's physical therapist Tracy. She's been working with kids a while, and she knows all about different services around the state. So she'd come to our house and work with Tess for an hour, and over the past few years, during those hours she'd suggest stuff. Like, hey, there's this adaptive skiing program, if you want to get Tess out on the slopes. And, if you're feeling overwhelmed in general, you can contact this organization called Woodfords Family Services, and they'll assign you a case manager, and that person can help you with all kinds of stuff, from getting you a BHP, or behavioral health professional, to finding ways to pay for all this crazy expensive equipment to help Tess walk. And you want to maybe look into medical marijuana for your kid? Here's who to contact, my friend, who's had great luck with using cannabis oil for her daughter with seizures. (Side note: we have not done the cannabis thing with Tess, but we have considered it. She doesn't have seizures, but we think it might still be able to help her.)
Anyway, that's what we learned from Tracy. That we're not on our own. That there are services out there for us here in Maine, and really in whatever state you live in. You just have to know how to find them, in case Google lets you down. And one thing Tracy did was connect us with other parents who really know the deal. None of those families have what Tess has, but that doesn't matter. They need help with a lot of the same stuff we do: vision services and neurology, and adaptive sports, and having someone come to your house and help you for an hour or two, so you don't go completely insane by having to be three places at once. (I can be in two places at once, but not three.)
Ok, part two: health insurance. I have spent more time on the phone with our insurance company than I've spent with my kids this past year. It's been like a part-time job. For real. I realize that part of this comes from having more insurance claims than the average family. Makes sense, right? If you only go to the doctor once a year, for your annual checkup, then you don't have to deal with your insurance company much. And for many years we were the opposite of that: multiple appointments in a given week, some out-of-state in Boston, not to mention equipment to help Tess walk, plus all the therapeutic services she was getting. So sure, we accessed insurance more.
But the real reason that I had to deal with them so often is that they were thieves. I can say this now, because we fired them recently, and they're now most definitely our ex-insurance company. They were thieves. They were thieves because they had policies in place that simply denied our claims about Tess as a matter of course. That was the default. To deny. To deny stuff that is clearly covered and not listed as an exclusion. Even stuff that we'd fight for, and they'd agree was covered, and we'd have all settled, they'd have this internal mechanism after a few months that would kick in and go back to denying those claims, and I'd have to start calling again.
In denying these claims, they'd then put the burden on us. Thinking that we would give up and just pay. I did not give up. I called them. Every time. I was a thorn in their side. Their side is ginormous and corporate, and they make more money than most of the huge companies we all know of, so that thorn, of me calling and being a pain in the ass, was something they barely felt. But I did it anyway. I worked my way up the chain, and eventually, through the HR department of my wife's job, I got an email and phone number for a pretty high-ranking customer service guy. So I could usually call him direct, and get stuff handled right. But even then, the denials continued. I still had to constantly call this guy.
And eventually, I got sick of it. After a few years, I had had enough. So I googled the president of the insurance company. It turns out that there was an entire county of people in a major city in Indiana who were having the same exact problem with the same exact company. Their county commissioner, the person who decides what insurance company is going to handle all those county employees, contacted the insurance company president and said, "Hey, you guys aren't paying claims for all these employees. Meet with me, cause we gotta fix this." And they had a sitdown, and the county said, "Fix this, or come the first of the year, when we need to renew our insurance, your ass is fired, and we'll shop for a new insurance company." Insurance company prez said: sorry, we'll fix it. The insurance company didn't. So the county fired them.
The beauty of this story was that once it got out, I was somehow able to get online and procure the corporate email address of that very person: the president of the insurance company.
So I started emailing the president. I said, "Hey, come meet with me. I note that you met with this county exec in Indiana about failure to pay claims. You say your company is committed to helping customer, so help me. You guys aren't paying my family's claims, so let's set up a meeting. I'm a stay-at-home dad, so we can meet at my house in Maine, here's my address. I'm free Monday through Friday, 9am to about 1pm. These are some dates when I know I'm not available. I look forward to hearing from you soon."
Send.
He didn't answer me, so I wrote again: "Hey, haven't heard from ya. The holidays are coming, so let's get something on the books soon."
And finally, something happened. The president never had the balls to respond to any of my emails, but not long after I sent that second email I got a call from the senior vice president of Operations (who reported to the Chief Operating Officer, who reported to the president of the company.) This guy was very very high ranking. He gave me his number. It wasn't his secretary's number. It was his. The phone that rings on his desk. When I'd call about anything, it would ring once, and he'd pick up. He was never happy to hear from me, and I gave him hell every single time, but to his credit, he made stuff happen. It turned out my suspicions were right--that they did indeed have a entire system designed to maximize profits and deny claims, even when the claims were legit. But armed with this guy's contact info, the amount of time I spent on the phone with the thieving insurance company went waaaaaay down.
So why am I telling you this? Because you can save yourself a ton of time, and probably a ton of money as well. If you're a parent of a kid with special needs, the last thing you have energy for is fighting with your insurance company. So do yourself a favor. Get online. Google the company. Click the "news" tab in Google, and see if anyone's done an article about them. Search those articles for high-ranking executives in that company. Then try to find their email address. Like, type, quote joseph smith end quote and then the name of the company followed by dot com. Do that work, and it'll pay off. Find the email of the highest-ranking person in the company, and start bothering the shit out of them. Especially if they're in operations. Whatever your issue is, whether it's denial of claims, or even their not reimbursing you out of your flexible spending account, that person might not have a thing to do with that. Not personally, anyway. But they'll know who does. And if you're enough of a pain in the ass, they'll fix it, or put you in touch with the person who can.
I'm here in Maine and I'm working with a group here called New Directions for Maine. We're aiming to be that website that comes up when you need help and are googling stuff, the site I needed so badly and could never find. The site's not quite ready yet, but we're working hard on it right now. Part of our work is creating toolkits for parents. I'm writing those toolkits. One about health insurance, one about Katie Beckett funding, and one about services in the state. What do you need? I'd love to know. Drop me a line in the Facebook comments below.