“You don’t know what you don’t know.” This common phrase is used for a plethora of situations when people don’t know a variety of information.  Whether it’s learning about a different culture or figuring out how to fix a car, there are millions of things that people learn.  Learning something new can bring on a whole range of emotions.  It can be fun and exciting, but it can also be difficult and frustrating.   Some information is readily available and easy to access; however, some isn’t easy to find. Oftentimes, information regarding services and benefits in the long-term care system can seem sparse and confusing. 

About two years ago, I wrote an entry about trying to figure out what benefits I was eligible for.  My financial situation had just changed because a parent had just started collecting Social Security and I became eligible for the Disabled Adult Child (DAC) benefit. As the title suggests, it’s an income benefit that adults with disabilities can receive when a parent starts receiving Social Security.  I’m not going to get into all the specifics of it because honestly, I don’t know them, but it was challenging to figure out because information wasn’t readily available.

Two years later, my parents and I found ourselves in a similar situation of trying to figure things out. This time it was because I became eligible for Medicare starting in January because I have been receiving the DAC benefit for two years (again, I don’t understand the reasoning behind this but that’s what we were told).

Admittedly, I know very little about insurance things, but, in October and November, commercials started running about advantage plans for Medicare.  We started hearing about dual eligible special needs plans that were being advertised.  We knew Medicaid would become secondary, but we had no idea if I needed an advantage plan.  In late November, my parents started making calls to their insurance guy.  They explained my situation and, very fortunately for us, the guy was super nice. He was honest with us and said he didn’t know.  He suggested that we contact the ADRC.  This was such a class act because he could have easily just had us sign up for an advantage plan and take the commission on it.  If he would’ve done that, it would’ve been a disaster.  My mom has been in touch with the benefit specialist at the ADRC and she has been super helpful. Due to needing to see all the specialists and getting infusions for my baclofen pump, I’m best to just have Medicare and Medicaid with no advantage plan.  Whatever Medicare doesn’t pick up, Medicaid will. I know others who have disabilities have to worry about MAPP premiums based on income, but I don’t have those circumstances—I’ll probably always be eligible for both benefits without premiums just due to my situation.

With Medicare now being primary, I needed to be enrolled in a drug plan for my prescriptions. Again, we had no idea how any of this worked.  The lady from the ADRC told us to create an account online and I’d automatically enrolled in a drug plan.  I created an account, but I wasn’t enrolled in a plan until a few days after the new year. That took a few phone calls to figure out that it takes a few weeks for that information to appear in my account. In fact, just this week, I finally received information about the drug plan in the mail this week. For someone who relies on multiple prescriptions, it was very nerve wracking not knowing how my medications would be paid for. 

Then, when my DAC deposit came in for January, it was less than what it had been.  I logged into my Social Security account and realized that money had been taken out to pay for my Medicare premium. That didn’t make sense to my parents and I because I had been on Medicaid for years and I’ve never had to pay for anything.  It didn’t make sense that I would have to start paying now.  I tried reaching out to some of my friends who have disabilities, but everyone’s situation seems to be a little different. My mom tried calling Medicare (and was on hold for an hour) only to be told that we needed to call Social Security (which was another hour wait).  They told us that we needed to call Medicaid. Instead of spending an hour waiting on the phone, my mom called the benefits specialist to see if she knew. Luckily, she did. She told us about another program that I qualify for and will be automatically enrolled in. It turns out that Medicaid will cover my Medicare premium in my circumstances. The system is just backlogged and, once it catches up, I’ll be getting reimbursed. Again, I qualify for this specific program based on my personal income. Everyone has a slightly different situation.

It’s frustrating for me because I’m not able to call these places myself. Although more and more financial and insurance places are creating online options to communicate with people, many government agencies still don’t have email or online portals for people to ask specific questions. Due to this, I’ve had to name my parents as authorized representatives so that they can talk to these places on my behalf. While I’m thankful that they’re willing to do this, it’d be really nice to be able to do some of these things myself—especially knowing that the technology is available to make it happen!

I don’t know how people can be expected to figure all of this insurance stuff out on their own when there’s no communication as to what is supposed to happen when.  As I’ve said in previous entries, I feel like my parents and I have lots of connections and are pretty “in the loop“ about a lot of disability related things, but this isn’t one of them.  We feel like we missed an important bulletin or something with this, but, in reality as far as we can tell, we haven’t. We’re trying our best to figure this out and make sure that I’m in the right programs to get what I need.  The information is available if people know where to go for it, but it isn’t easily accessible for the average person.   

Circling back around, the saying is true: You don’t know what you don’t know. With some things, people may be okay with not knowing everything; however, with other things, people have no choice but to go to extraordinary measures to obtain the information they need to figure things out. It’s said that continuing to learn new things is good for our minds; I guess that’s part of life!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.