I heard someone say yesterday that the greatest untapped resource in the world is angry mothers & that, combined with some of the things I’ve seen lately has mobilized this angry mama bear. Why? Because my family and many others have encountered an organization that is supposed to help us but ends up hurting more people.
When Gabriel was born, I was advised to get him on SSI because he would always have insurance. Little did I know that the process to get him qualified & KEEP him qualified was a nightmare. First off, he was denied initially despite the fact that HLHS is considered on the “red list” of diagnoses which should have qualified him immediately. At the time, I filed an appeal which was denied & I didn’t have the energy to fight it ’cause, you know, I was caring for a medically fragile infant. When I finally got the energy up to re-apply, Gabriel was 3 and it took nine months to get approval and I’m convinced that the only reason he got approved is because I broke down in the appeals hearing and the judge felt bad for me.
Since that time, Gabriel’s SSI has been revoked because I went over the income limit–they cancelled his insurance and gave me two weeks notice. Needless to say, I flipped my shit because a heart transplant kiddo simply can’t be without insurance. Fortunately for me, I had an ally that helped me get him covered quickly. I’m not even going to touch the “overpayment” issue but suffice it to say that if they don’t approve my appeal, GABRIEL will be saddled with debt (of course, I’ll pay it but the issue is how fu*king stupid is THAT?).
Long & short–having a kid with a heart transplant is hard enough. There are so many things that we have to deal with on a daily basis AND we have to deal with the fact that our babies may have limited lives. There is a TON of grief that comes with that as it is and then when you add in things like having your kids medical insurance or the additional income that many families rely on pulled with no real reason and hardly any notice is just WRONG. With that said, I have posted a petition to ask SSI to change Heart Transplant to a lifetime condition….because no parent should have to keep proving that their kid is “sick enough”.
Will you sign and share? I’m taking this to the White House if I have to.