Getting back into it-- Success Story #1

Getting back into it—Success Story #1

I’ve been on quite a long hiatus from this blog writing thing, but I am going to try to get back into it now! It’s been a long several months, full of eventful days and nights. I’m going to break up all our adventures into more manageable pieces. I’ll start on a high  note J

Exciting story #1 : We FINALLY got approved for the Medicaid waiver program! I worked hard with a number of people to muddle through the crazy system, and after providing many documents of support, the folks at the state level agreed to waive the income requirement and allow us access to full Medicaid. Having Medicaid helps us in a number of ways:

1.       We qualify for respite care hours! At this point, we will likely have to fight pretty hard to get more than the minimum of 10 hours per month, but fight we will! Our goal is to ask for 80 hours, which will help to cover the costs of having an in-home nanny. Because of Norah’s high level of needs, a daycare center is not an option. Not to mention the risk of germ-sharing. We are still very protective of Miss Norah’s health, since she has a harder time recovering from respiratory infections. Small colds can easily turn into pneumonia, because her lungs aren’t always strong enough to cough up all that junk. I’ll fill you in more later on what we did to avoid pneumonia last month…

2.       Equipment is more readily covered by Medicaid. Things like a stander, gait trainer, bath chair, special needs car seat or bed are all covered more readily by Medicaid than by primary insurance companies. We are currently applying to get a stander that will allow Norah to both sit and stand, and move from one position to the other. Here’s a photo:

We are also starting to evaluate special needs car seats, but Norah’s light weight only leaves one car seat to choose from (not really a choice, eh?!?). It can accommodate up to 90 pounds, so this would be the only car seat we would ever need, if we decide to do it right now. The next set of seats open up at 25, then 30, then 33 pounds. These all sound so far out of reach. Details on troubles with weight gain and related challenges will be coming soon too.

3.       When Norah turns 3, her diapers will be covered by Medicaid! I know many moms are so excited when their kids are finally potty trained because they can stop paying SO much for diapers every month. But Norah will always be in diapers, so it’ll be nice to have this financial ‘burden’ lifted!

4.       We qualify for WIC. Because we are doing a blended diet with Norah (I promise I will do a separate blog post about this…I’ve been taking photos in preparation over the past few months of the different derivations of blends), having WIC allows us to get some financial assistance with the ingredients. Having the more basic ingredients covered makes it easier to afford some of the more expensive/obscure items (i.e., oat milk, agave nectar, grape seed/safflower/sunflower seed/coconut oils, quinoa). Her blends are constantly changing…this has been our biggest challenge in the past several months—trying to work out which ingredients work, which don’t, etc. It’s hard work!

5.       All copays for both her pediatrician and specialists are covered. I just got out of an appointment with a social worker at the hospital (yet another blog post topic!), who told me that last year we had 146 appointments. That’s right…one hundred and forty six. And there are only 200 business days in a year! And, that 146 does not even count our visits to her pediatrician, since he’s not in the University of Michigan system. That’s probably another 25 or 30 appointments. Pretty amazing! You can see how those copays add up at $20-$30 a pop! Luckily we have had our specialist appointment copays covered for awhile now because Norah has had a secondary insurance program through the state called Children’s Special Health Care System. Those copays now shift to Medicaid along with her primary care copays. Thank goodness!

I’m sure there are other perks that I have yet to discover, but I am so grateful to have been given access to this program. It has its faults, for sure. I have quite a few thoughts about WIC on a policy level (we only are allowed $6 per month for fresh produce, but WIC provides two 64 ounce containers of juice! What?!?)  Complaints aside (for later posts), I am fortunate to have had all the help from case workers, social workers, and administrative staff at the state level to make this possible. It was well worth the time spent fighting for it! 

To close...A few photos of Norah from the past few months!