This is more or less a vent post:
William was denied social security disability. Yes, it is true he is nearly 100% disabled, but in the state of Utah, along with most states, it is based on family income and has nothing to do with how disabled the individual is. That's all sweet and stuff, but we are very tight monthly (just like everyone else); I was planning on going back to work this year. But obviously, staying home and being William's caretaker, nurse, physical therapist, occupational therapist, speech therapist, and of course mother, comes first and pays for itself. I applied for assistance (not financial, but for respite care through the state of Utah to help me throughout the day), and we got accepted, but was told "his medical condition does not carry a high need." Are you kidding me?! How much "higher" can Krabbe Disease be? So, even though we are accepted, he is "not in the top 1,000". I don't know about you, but as far as I can tell, if folks are disabled, they don't grow out of it, and if they do, SOME refuse to go back to work as getting a monthly check is much much easier. So, basically, we have to wait for 1,000+ to kick the bucket or the few that milk the system to gain work ethic, before we can get any kind of assistance. Yeah.
So, we have a disability lawyer in Salt Lake City that is helping us work on an appeal for social security disability. I have heard many families have to appeal. You know how tempting it is to have Robert quit his job (he's not and he won't, ever), then we'd probably bring in more than enough monthly for our 3 member family and William will get all the support he needs and health insurance for free (medicare). AND, not to forget to mention, Robert could spend more time with his son and not have to be at work 40+ hours a week. There is something seriously wrong with the system, big time.
Ugh, that's all for now.