We’ve learned a lot about insurance over the last several years and I just thought I’d share a bit of that side of things. I had NO idea about most of this before Evie was born and I’m guessing that’s true for most the population. And I also know we’re generally hesitant to share this side of things, too. See, Evie has Medicaid as a secondary insurance and well, we don’t want people to think we’re just living off the state. But I didn’t realize how truly necessary Medicaid is to special needs families.
It is pretty much standard for kids with various disabilities to have secondary Medicaid, but every state is VERY different in how that’s done and who qualifies. In Iowa, Evie got a ‘free’ year of Medicaid because she was in the hospital longer than 30 days. When she was still in the NICU, the social worker suggested we start filling out the paperwork to get Evie onto a Waiver program. There are various Waivers available (and each state calls them some different including the Katie Beckett Waiver and here’s the neat backstory on that), but basically they ‘waive’ the income requirement by basing it on Evie’s income rather than our family’s. At first, we weren’t sure we really wanted to apply. I mean, we had good insurance, some money in the bank, a secure job. We should be able to handle this, right? Ha.
Maybe it was foolish, but I thought, “Well, our out of pocket maximum is X and we can come up with that money.” I just didn’t understand how insurance really works. I didn’t understand that that is only for covered services. I didn’t know that didn’t cover home care nursing. I just didn’t know. But we filled out the application anyway and had our free year while Evie was placed on the 10 month waiting list (I believe it’s significantly longer of a wait now) for the Ill and Handicapped Waiver. Those first 5ish months home, her secondary Medicaid picked up well over $10,000 of non-covered services and supplies. And that was BEFORE we started home care nursing.
Our primary insurance REALLY is good in the grand scheme of things. It covers a HUGE majority of her costs, but we would have been nickle and dimed to death with copays and coinsurance and non-covered items without Medicaid. Each individual bill doesn’t look like so much, but they add up quickly. So just in the last few weeks, I got several insurance statements for various supplies and services. $112, $1.17, $40.49, $16.02, and 16 other smallish amounts for supplies, labs, scopes, consults, appointments and it totaled up to almost $650. That’s 2 weeks of insurance statements (I get maybe 3-4 each week) for various claims spanning a few months with no major surgeries, hospital stays, and maybe 2 appointments. That’s a slow few months for a kid like Evie. Medicaid picks those up and we can continue spending our money on those items that no insurance covers (like the ridiculously higher electric bill for all of Evie’s equipment. That stuff is NOT energy star rated. Or a reliable vehicle to get Evie to appointments) or the approval process would be so long that it harms Evie (her communication device and walker are just two examples of that). And we can also save our money for the day when (hopefully) Evie is declared ‘too healthy’ to receive any more assistance, but not quite healthy enough to just stop going to the doctor (because that day will never come. It just won’t). And again, private insurance does NOT cover home care nursing. Pretty much NO private insurance does. And when it does and when it’s tied to your employment, you can bet that families start worrying that the company will find a way to fire them just to cut back on that cost. But without home care nursing, families either have to put their child in a facility or give their child sub par care. Or run themselves into the ground until they can’t continue (that was how we decided to spend our first 5 months home with Evie because I didn’t want to admit I needed help).
I share this to explain how insurance all works when you have a child with disabilities, but also so you understand how important Medicaid is to special needs families. Our children aren’t on it because we didn’t have emergency funds or good insurance. They’re on it so their families don’t go bankrupt, so that we stay afloat financially and keep paying our taxes. So families don’t have to give up their children in order to get them the care they need. So children with disabilities can stay living at home instead of in hospitals or nursing homes. In the end, that helps SAVE the state money. There are fewer kids who are wards of the state and fewer families who go bankrupt and stop paying taxes and more kids who have better outcomes and can contribute to their communities in a variety of ways.
If we want to encourage families to keep children with disabilities (both before and after birth), we need to make sure that decision doesn’t financially destroy them. There’s no way to prepare for a medically fragile child. None. You can do everything right and it will simply not be enough. And you could put every spare dime toward medical costs and it won’t even put a dent in the piling debt. All to do the bare minimum of keeping your child alive.
We’re incredibly grateful for the help we’ve received from Evie’s secondary Medicaid. It’s allowed us to focus on Evie, to give her what she needs, to get her the best care available, and to give her and her sister (somewhat) normal childhoods. We’re still thrifty. We’re not ones who like spending money. But we’re glad that when we need to spend money to care for Evie, the money is there and not eaten up just trying to keep her alive.