So when we first found out about Lauren's "designer genes" we assumed that her medical care would be super expensive and that we'd barely be able to struggle to make it financially. We envisioned (among other things that have already proved to be false) a life of being totally destitute and having no money for the basics, much less extras. I actually think this is a pretty common misconception for families just finding out about a child's diagnosis of Down syndrome.
I am happy to report that it's not true! Lauren and Ryan are currently covered under my health insurance and she has something called Childrens' Special Healthcare Services as a secondary. She also has Medicaid as a secondary insurance for now, but I'm fairly sure that will be dropped now that I'm working. Our caseworker wasn't sure. We've had a lot of family and friends ask us how it works out with the health insurance stuff for Lauren's care. Lauren and Ryan were both on straight Medicaid through the state of Michigan because of our income vs family size. Lauren's secondary insurances now are strictly because she has special needs. We pay into it but the fees are waived for families who qualify financially.
This will help to cover any co-pays, deductibles and out of pocket costs for Lauren's medical care. YAY! We are lucky to have great health insurance, even though the premium is kind of high. It covers a lot of stuff, but not really all that often. Our private insurance covers hearing exams and hearing aides every 3 years. So far Lauren is passing all of her hearing tests but that might not always be the case. I'm not sure how often hearing aides need to be replaced, but considering the rapid pace at which kids grow I would assume more often than every 3 years. Lauren's secondary insurances will cover those. If she should need any assistive devices ie: braces to help her learn to walk or hearing aides, we should be covered. It looks like our private insurance will cover leg/ankle braces, but we aren't sure how often.
Some states offer a Medicaid Waiver, sometimes called a Katie Beckett Waiver. This allows people with certain health concerns to have Medicaid regardless of income. Some states allow Down syndrome alone to qualify a person for the waiver. Michigan isn't one of them. Katie Beckett's story is pretty awesome and her mom was a wonderful advocate! Look up her story if you have time!
Lauren having Medicaid is something I've struggled with. I'm not sure I can articulate why. I think part of it is because the reason the termination rate is so high for babies with Down syndrome is that they are percieved to be a "drain on society". Greg and I DO NOT agree with that statement. I want to be able to provide for her medical care. Maybe it's plain old pride. I'm not sure. I know I felt like we were looked down on by some people when I took either kid to the doctor. "Oh, you have Medicaid?", said in a snooty tone really hurts, you know? And that had absolutely nothing to do with Down syndrome! I'm sure a lot of people recieving assistance have experienced this kind of discrimination, and it sucks. Stereotypes of people abusing the system have ruined it a little for the people for whom it was intended. (Did you hear about that lottery winner awhile back that was still receiving food stamps?!)
Lauren having special needs made it a whole new ballgame in a way. I don't at all feel that we're owed extra help from the government or anybody based on Lauren's diagnosis. I am so grateful for the extra help! But it certainly makes sense why it exists when you find out that the average cost for hearing aides for a child are between $1000 and $4000 per ear. I don't know about you, but I don't really know anyone that has that kind of money laying around.
I guess the bottom line is that while it feels really good to know that we are able to provide for both of our kids, the fact that we get some extra help for the super expensive stuff is amazing! When I found out that Lauren qualified for Childrens' Special Healthcare Services it honestly felt a little bit like the community as a whole was coming forward to help our kids with special needs meet their full potential. And I think Lauren has a lot of potential to reach :)