We're one step closer to getting Gwendolyn accepted into the Medi-Cal system, California's Medicaid program funded by the State and federal governments. The program will open up many services for Gwendolyn — the most immediate we hope would be more nursing hours during the day to provide us respite. We've been denied several times by Medi-Cal based on their standard criteria, mostly based on income/assets, but over time we've learned that there are special waivers for certain diseases, such as SMA1, and for certain circumstances. The trick is figuring out for which services waivers and exceptions such as this exist and then figuring out what the process is to get to the right person or organization who can help get you through the system. The process reminds me of the old-school version of the game show Let's Make A Deal — with many different curtains to choose from…most of which contain zonks 
Looking back on our experience thus far with SMA, navigating the muddy resource waters and health insurance behemoth — don't get me started on insurance — has proven the most frustrating for me. Processing a terminal diagnosis such as SMA is difficult enough, but coping with the reality of the situation from a practical, day-to-day point of view has proven to be a full time job. In the months since Gwendolyns diagnosis we have found that the resources — government, national, and local — exist, and they exist in abundance, but finding and navigating them can feel next to impossible at times.