For Your Information

There has been a lot of discussion regarding health care in the papers and on the news recently.  I feel very fortunate that we have employer sponsored private insurance for our family.  Having said that, I don't think people realize the expenses that families with special needs children incur even with insurance.  Additional co-pays, expensive prescriptions and mobility equipment result in our reaching our family deductable typically within a couple of months of a plan year.  Did you know that not all disabled children get assistance?  Many people think that just because a child has a disability, that automatically qualifies them for Medicaid or SSI or another type of assistance program.  Nope.  Parent income is taken in to account and therefore limits the resources available to families like ours until the child turns 18.  Those of you with toddlers or young children, can you imagine paying for diapers and daycare FOREVER?  That's our realization for our oldest. 

There is a program that RJ qualifies for.  It's called the Sarah Lopez Waiver.  It is a Missouri program in which the requirements include that the family does not qualify for Medicaid and has private insurance.  It acts as a secondary insurance but also covers some items that insurance doesn't cover (like diapers!).  Ryan has been on the waiting list for this for six years, since he was a toddler.  There are a limited number of spots and people need to age out (or become ineligible) for spots to open up.  I have heard there are only 200 spots available in the state of Missouri.  

I received a phone call on July 13th stating that there are spots available and RJ is one of the children being "considered".  In order to be presented in front of the medical board for consideration, over the last week I had to compile a stack of documents that would make your head spin.  It also involved having our doctors fill out forms, two trips to the Medicaid office (to prove our lack of qualification for Medicaid), a trip to the safe deposit box and making hundreds of copies of medical and education reports from over the last eight years. 

Today everything was turned in and now we sit and wait.  I am hopeful but realistic that it may not happen for us right now.  As I told my mom, at least I now have everything compiled in one place if I need it again as I made an additional copy of everything for us as well.