So today I am cleaning, getting ready for a case manager to make her monthly visit. I hate having to do this just to keep Medicaid. It seems so unfair that they have to come check up on Brady and "lay eyes on him" just so that he can have Medicaid. Why is it that because he has special needs and gets Medicaid, we need to be "checked up" on; however, those who just have regular Medicaid don't require monthly visits by three different people? It seems logical that if we have kept him alive all this time, we must be doing something right. I'm sure are typical children out there who are being abided but no one is checking up on them. Are we more likely to abuse him because we are above the financial guidelines for getting regular Medicaid? Do they come because they think his Angelman Syndrome is going to magically disappear and we won't need it anymore? Rest assured, Medicad and the rest of the world, when it is cured, everybody on God's green planet will know about it. We will be celebrating in so many ways and will also be celebrating the fact that we no longer need Medicaid to help cover copays on $20,000 worth of yearly seizure Meds, copays on his $25,000 VNS, copays on $5,000 strollers, copays on the 30+ Hospital stays by the time he 7yrs old, etc. Anyway, I can't complain. We know why it's like to incur all of these Medicaid bills without Medicaid, as we did so for many years. I am eternally grateful for the young woman who went out of her way to help us qualify...life was scary, unsure, and difficult for is back then. I just wish that the government didn't make it so hard for working class people to get help for their children who have special needs. Not only are we forced to earn a medical degree overnight, we are forced into the role of investigator, advocate, chauffeur, and champion boxer, as we constantly have to apply our boxing gloves to fight the many battles we face and navigate this crazy system. In the end, it is what it is. We would care for our child with or without all that tax money that we pay in everyday, but a little help does make our chaotic lives a little easier ;) I don't worry for us, I worry for all of those hard working people who still have zero help with their special needs children. Lord knows any working class person pays in a fortune in taxes everytime their payroll check is printed. It's just sad, very sad. |
