I was fortunate for some time.  Since I was determined to be disabled under a certain age I was able to stay on my mom’s health insurance plan for many years.  My mom bore the burden of this cost for over a decade.  The amount of which I only realized much, much later when it came into play in the lawsuit that my private student loans filed against me. More on that another day.

It turns out my mother was paying approximately $350 a month for over a decade for me to have health insurance.  This was a huge cost for her and she rarely said a thing about it.  If you knew what my parent’s income and lifestyle was like you could see that amount of money would have made a large difference in their lives, but instead, they chose to keep me on an insurance plan that we knew would cover a majority of my healthcare issues with a lower deductible.

Several years after the law suit ended my mom developed nerve issues of her own and had to go down to part time work.  This would increase the cost of medical care to nearly equal her pay to keep me on.  She was very, very upset about this, but had to take me off her medical.  At that point, I contacted Medicare to let them know they were now my primary insurance. (Of note: You qualify for Medicare two years after qualifying for SSDI.)

Prior to that they had been my secondary insurance.  My income had been low enough on only social security that the state covered my $134 monthly premium.  That is no longer the case.

Going from regular insurance to Medicare wasn’t a huge change for me.  I anticipated it being far worse.  I didn’t have to change doctors.  Thankfully, all my doctors allowed me to keep seeing them, but that is not everyone’s experience.  I have had trouble finding doctors for mental health care.  Sadly, the pay outs are pretty low compared to most private insurances so it’s not terribly uncommon for people to not accept Medicare.

Medicare generally (other than items specifically covered at 100% like annual physicals and what not) covers 80/20 leaving you responsible for the remaining 20%.  If your income is low enough (it was before I started pet sitting) you may be covered for that 20% through Medicaid.  However, that will vary wildly based on if your state participated in Medicaid expansion.  I’m super fortunate in that my state did.

Often times, people end up buying Medi-gap plans to cover that 20%.  However, the least expensive I can find is $400 a month. With a current Medicaid spend down of $4,400, it’s less expensive to continue as is, and I simply can’t afford another $400 a month on top of a deductible.

I can speak specifically to just a few things regarding Medicare.  One is that mental health can be difficult to come by.  Another is that diabetes and sleep apnea/narcolepsy coverage isn’t great and can be difficult.  They only cover a very specific meter/strips and will only allow you 2 strips a day if you are not a type 1 diabetic.  This is why I pay out of pocket $40 a month for my Freestyle Libre to better manage my illness.

I’ve also had struggles in regards to a cpap as well.  I’ll write about that in an upcoming post as it’s a doozy.  Medical equipment and sometimes specific medications can be an issue with Medicare as it currently sits.

But for the most part, I’m doing okay.  My out of pocket costs for 2018 were about $4,000.  My diabetic sensors are not covered, massages are not covered, glasses are not covered, there are costs for prescription drugs and co pays.  Dental is not covered.  I have an upcoming post on dental resources/minimizing costs.

Based on the income discussed in previous posts, you can see that getting ahead is by inches, when making any money costs you so much money, but Medicare has worked out better than I honestly expected.  I do wish they would include dental/glasses, but who knows? Maybe we’ll get universal healthcare sometime soon.  That would radically change my life and many other people on disability.  Many of us want to contribute as much as we are capable, but we are limited by so many rules and terror of losing our medical coverage.  Part 6 will cover what I call, “The disability trap.”

Elephant in the room: SSDI (Social Security Disability Insurance.) Part One.

Social Security (SSDI): The numbers. Part two.

Social Security: Part 3 – Working

Social Security Part 4: Guilt and Shame