Not Knowing What You Don't Know

I gleefully blogged a little while ago about ditching Joy's ratty old cloth diapers (of course we saved them for primo rags!) in favor of disposables funded by Medical Assistance (MA), which are delivered to our doorstep.

The other side of that story is more forehead-slapping than gleeful. Joy actually qualified for Medical Assistance in April 2007, when we went on the waiting list for the intensive autism therapy that she's finally now receiving. We were excited to qualify because we thought we'd need that support to fund some therapy in between the time she aged out of Birth-to-Three (May 2007) and the time she got picked up by the school district (September 2007). But then we actually got our regular insurance to cover speech and occupational therapy for the summer. The only things we ended up doing with that MA card were that Birth-to-Three pounced upon the chance to bill MA instead of absorbing April & May's therapies themselves, and that we got a discounted annual membership to the local children's museum.

Then July 2008, when we came to the top of the waiting list, we got a new county caseworker. In our first meeting, she told me that MA would cover the co-pays for Joy's epilepsy meds, plus now that Joy was four, diapers would be covered too. Well, we hadn't missed too many potentially-covered months on the diaper front since she just turned 4 at the end of May. But the co-pays, that we'd been ponying up all this time! It turned out that we even could have back-billed those co-pays for an entire year, but for the fact that we'd been good consumers and had used pre-tax dollars through a Flexible Spending Account. So we couldn't go back and double-dip.

How do you know what it is that you don't know?

I went to a wonderful informational meeting the other day. It was held at the agency that runs our town's Birth-to-Three program, and featured a speaker from our Regional Children and Youth with Special Health Care Needs (CYSHCN) center. I'd never heard of the center before, or at least hadn't remembered it due to its awful crunchy unmemorable name. However, it turns out that it's a government-funded information service (read: no cost for the call) where parents can call to learn about local resources for their kids with special needs. The resource person gives you suggestions about available services, and then follows up with you later to see what success you've had accessing those services.

There were 5 moms around the table, having kids with different challenges and different ages, all avidly drinking in the information and taking notes and collecting handouts. Then we started exchanging information too, and things really got rolling. I learned the names of local epilepsy-support contact people, and that MA may pay for travel & lodging if you have to travel for a necessary medical service, and about a medical ID bracelet with downloadable information. I had a few nuggets to share too - the other moms hadn't heard about the children's museum discount, for example (nor had the speaker!)

Then despite that lovely information-rich session, and having talked there about my whole MA/diapers/co-pay experience, I learned something new in the comments when I posted about diapers... Trish gave this excellent advice:

Just make sure the doctor checks "no generics" on the prescription or you will get the cheapest diapers known to man!!

Gah! Trish, the delivery service that our caseworker recommended only has "generics" available, so we're working with that at this point. But see, there we go again -- I didn't know what I didn't know and nobody told me up front!

I'm a librarian, so information is my stock in trade. I'm very good at ferreting things out when I've got a known question (and even at getting library users to clarify what question they're really digging for when they don't ask it very straightforwardly). But when I don't know what I don't know, and am not aware that there's even a question I should be asking, I'm as stuck as the next person.

Blogging is one answer, I suppose. Regular in-person support groups with other parents in a similar boat, where things can come up in discussion, is another. (That's one thing I don't have going right now, despite my otherwise-awesome local support network.)

How do my fellow special-needs parents out in bloggy-land cope with this?