Once again, I find myself having a VERY difficult time while I fight every step of the way EACH AND EVERY DAY for services and assistance for Mike. As empowered as I was last Wednesday when I was up in Albany with Courtney and Brandon, I became even more dishearted the next day when I went to the Fair Hearing at Social Services for Mike.
Bottom line is this: unless you are a millionaire when you or a spouse are diagnosed with a catastrophic disease, there is no one, not even our government that can help. You either have to have everything or nothing - there is no in between. The judge told me that while he may not agree with the rules, he still must follow them.
So here I am, thousands of dollars in debt to our home health agency, no health insurance for Courtney or myself and no where to turn. Apparently my government doesn't care if I lose my job because I decided to keep Mike at home. If I cannot afford the $1,200.00/month they feel I can pay for Mike's aide, then I will need to stay at home and care for Mike myself...which means I will lose my job...which means I will lose my home...which means my entire family will be homeless and on the street. That's EXACTLY what they are telling me.
Something is VERY wrong and it needs to be fixed. I am telling the world my problems, not for sympathy, but for the sole reason to raise awareness. We need to think more carefully when we vote for elected officials. We cannot assume that our government (no matter what state you reside) will be there for us when we need help. What hurts me the most is that I am saving New York State thousands and thousands of dollars a year by keeping Mike at home and out of a nursing home, yet they DO NOT CARE. Times my thousands and thousands by all the other families caring for sick loved ones at home and that's a s*%t load of money. Now times that by families in other states....shouldn't we be elligible for some kind of assistance, if by the off chance we are not millionaires????
I'm not even getting into the fact that my children have worked their butts off in high school and college to keep up their grades, despite all their hardships, sacrifices and losses...yet they are only eligible for minimal government grants. What kind of message does this send to them? To any child out there who is struggling despite difficult situations at home, who doesn't happen to be a minority.
I am bitter, I am angry and I am scared. I do have some people who are trying to change decisions, but I am not hopeful. And even if those people DO move mountains, what happens to the others out there who don't have connections??? My heart is breaking..for so many reasons.