On the Facebook page, Awesome Outcast, we try to keep things as upbeat as possible. Nobody likes negativity (especially me). But, “behind the scenes”, as they say, I’m constantly dealing with it. It isn’t from RJ’s disabilities. It isn’t from pushing him to finish an art project or doing craft shows. My biggest battle to date is dealing with governing agencies in order to keep RJ’s benefits intact. And many times, to keep food on the table. To some, that’s a pretty negative statement. To others, it may sound like I’m in a pity pot. Mmm…sorry, folks. Yes, it’s negative–but I’m not in a pity pot. It’s my reality. And I’m pretty sure it’s a reality for many with disabled loved ones.
The agencies I deal with are from three areas. Local (county), State, and Federal. And each has their own set of rules and requirements regarding benefit eligibility. This can be broken down even further into medical facilities and what coverages they accept. Because both RJ and I receive Survivor Benefits, it makes things even more interesting.
One example of this is when RJ turned 18. At that time, his health insurance was pulled. When I called to question WHY I found out RJ had three open files for benefits. One was under my deceased husband’s name, one was under my name, and they had just started one under RJ’s name. So instead of contacting me to verify information, they just stopped his medical benefits. Just like that. How did I find out it had been canceled? I found out it had been canceled when I got the bill for RJ’s overnight stay in the hospital. No insurance coverage listed anywhere. We got the number of files squared away after several phone calls.
Another example: Because RJ is chronically disabled he needs to have Medicare coverage in addition to our State Medicaid coverage. Medicaid recently refused to fill scripts for his meds. Medicaid will kick in after Medicare. But Medicare wasn’t in effect yet. It took three days of phone calls for one agency to tell me a seven-digit number needed to fill RJ’s medication scripts. Three days.
The list goes on and on. Budget cuts, changes in programs and eligibility caps, etc. Last year, we were audited five times to verify RJ was in fact disabled. Five times. Two of those were by random draws of Social Security, once by them because he was turning 22, and the remainder by new agencies for their disability requirements. We’re still learning about this new agency and how his benefits will be affected. So far, it isn’t a pleasant experience.
Anyway – I suppose this doesn’t sound so bad. I tried writing some of the things we go through on a regular basis, but I would’ve needed to write a book. But this is what I do. The above items don’t even scratch the surface. Nearly every day I make phone calls and fill out recertifications on his disabilities. Sometimes it only takes an hour or two. Other times I have to put things aside to make dinner. It’s been something I do since RJ was born. It’s one of the main reasons I’m a stay-at-home Mom. And it is truthfully the hardest (and most irritating) thing I deal with revolving around RJ’s disabilities.