Medicaid mania!

Everyone wants to be an expert at something, right? We all have that one special interest that no one else really cares about, but you could go on for hours about the Rocky movies, or the history of fonts, or the benefits of chiropractics, or the proper uses of there/their/they're. My latest growing area of expertise ... (dramatic pause) the Medicaid Waivers.

What is a Medicaid Waiver, you ask? Well, I can surely tell you! It's a type of Medicaid for people who have special needs. When you're talking about children, it is not dependent on the parents' income, so lots of people who would not qualify for regular medicaid can get a waiver. Not only does it give you extra health insurance benefits (ours is secondary to our private health insurance for Nate), it also provides things like diapers and wipes for kids over 3, or catheters; respite care, which is basically a glorified term for babysitting that gives the caregiver "respite" (and what parent, especially special needs parent, doesn't need respite?); personal or attendant care (which I don't want to go into right now because its a sore subject for me this week); and other types of help, depending on the person's needs.

When Nate was a baby, I tried to get him the Synagis shot to prevent RSV, which can be very dangerous to preemies (he was a 32-weeker). The shot was very, very expensive, to the tune of about $1,400 per month for 6 months. Our insurance *cough*UnitedHealthcare*cough* denied him, I appealed it, they denied the appeal, and I appealed it again, only to receive the call that they had denied it again as we were leaving the pediatrician's office with the news that Nate had been diagnosed with RSV. Two days later, he was in the hospital and was there for a week. During that week, I called up the nice insurance people and said, "I told you so" and "Wouldn't it have been cheaper to just give him the shot?" and "So, now I guess you want to pay for the shot for the rest of RSV season, right?" Hmm, nope. In addition to this, UnitedHealthcare would not pay for durable medical equipment, which includes orthopedic braces!

Anyway, it's obvious how I feel about insurance in general and UnitedHealthcare in particular, but during that whole ordeal, I heard that there was a type of Medicaid that would pay for Synagis, and it wasn't dependent on income. So I went to my local Community Based Services office to apply for Medicaid. They said, "Sorry, you don't qualify based on your income." I'm all, "But wait, I heard this kind of Medicaid didn't depend on income." They didn't know what I was talking about. They pulled several other people into the room to see if anyone knew what I was talking about. One said she had heard about someone doing this once. I KNEW this was a possibility, but I could not for the life of me figure out how to get it. A therapist told me the name of someone who worked at a home health agency, and I called her, just desperate to talk to anyone who knew anything about this. She set it up. She sent someone to assess Nate for home health services (I had no idea why), and because he qualified for respite care, he got a medical card. We didn't even want respite care, but we did want that medical card.

Medicaid has SAVED us. It pays for everything our insurance doesn't pay for--the hundreds of appointment copays, prescriptions, braces, diapers and wipes ... and now that respite care/attendant care/personal care is much appreciated! If Nate didn't have the issues he has, you bet his and Georgia's little bottoms would be in a nice daycare somewhere, but that just won't work for Nate so we have to make special arrangements. The Medicaid Waiver helps us survive financially almost like we didn't have the special needs to consider. The only thing it hasn't paid for is Nate's therapy, and that's because GreenHill is not a Medicaid provider (though they are trying to figure out how to be!).

But the troubling thing is that this resource is not accessible to most people. I was persistent to the point of being stubborn, and it still took me an entire year -- and just knowing someone who knew someone -- to figure out how to get the waiver that we qualified for. It makes me furious at the system when I talk to a parent and they are so worried about medical bills or being so burnt out from taking care of a special needs child 24/7, and I ask them if they have a Medicaid Waiver, and they inevitably say, "No, we don't qualify based on income." YES, YOU DO!!!! And it's my mission to let all Spina Bifida affected families in Kentucky know about this resource.

Last week I went to an information session about Michelle P. (one of the several types of waivers, and the one we happen to have for Nate) at the Council on Developmental Disabilities. I was sitting there, literally with my mouth hanging open, just blown away at all the resources that WE NEED that are available to us, but I didn't know about them. Then Tuesday, I had the opportunity to go to Frankfort (Kentucky capital) to advocate on behalf of Spina Bifida affected families with a national consultant asking what needs to be changed with the waivers. Then on Wednesday, I went to Lexington for the "Celebration of Disability Expo and Medicaid Waivers Fair" where there were representatives from each of the waivers to speak on a panel and individually with families.

First, let me say: I love my job. :) This just feeds my geeky obsession with Medicaid. I learned a lot about the waivers in general and even some specific information about our family's situation. I also learned that you pretty much have to have a master's degree in Medicaid Waivers to really understand the system, and I'm still at about a 6th grade level. BUT, I do know enough to walk someone through the process of applying in Kentucky, and we're hoping to do informational sessions for our SB families across the state.

So there's everything you probably didn't want to know about Medicaid Waivers, but I'll let you talk about Rocky II on your blog, and I'll talk about my area of expertise on my blog, kay? :)