A steering wheel cover. An ice maker for your refrigerator. Gourmet coffee. That special mouse pad with your favorite team on it. There are many different types of things that adults invest in to make life easier and more enjoyable. Whatever it may be, adults often have various types of expenses.  While what is considered a necessity varies from person-to-person, there are several things in life that are optional. Optional things may be considered “wants” by some people; while others consider them needs. As we grow up, we learn the basics of wants and needs. Generally, needs are things that you can’t live without, and wants are things that you can function without out but you desire to make life easier or better.

When it comes to medical equipment and supplies, most people have some sort of health insurance. Of course, coverage of what’s paid for varies widely depending on individual circumstances, but often a lot of the “necessary” medical equipment and supplies are at least partially covered by insurance. Like many people who have significant disabilities or health conditions, I am on Medicaid and Medicare. As I’ve explained in previous entries, I’ve received a lot of equipment, supplies, and services through Medicaid over the years. Everything from electronic wheelchairs, to shower chairs, to cares and medical services…the list is truly endless of what Medicaid has provided me. Simply put, I rely on these goods and services to live.

Recently, my IRIS Self-Directed Personal Care nurse came to do her quarterly visit and I asked her if Medicaid would pay for more than two boxes of gloves per month. With having a caregiver with me 16 hours a day now, I’m going through a lot more gloves. She explained that Medicaid would buy more gloves, but it would come out of my SDPC budget which would mean either less hours or a lower wage for my workers. Obviously, I’m not going to do that because I need all of my hours, and I’m not going cut my workers’ wages just to get more gloves—that’s ridiculous! My nurse told me that the two boxes Medicaid provides really technically aren’t for my workers; they’re for “personal use” meaning for friends and family to use. When I was with care agencies, they usually provided gloves for their employees, but, in the IRIS program, participants are expected to provide the gloves for their workers. While I’m sure you could put them in your regular IRIS budget, not many people would sacrifice another service just to get gloves for their employees. On the other hand, at least for me, not only do I want my workers to wear gloves while doing certain things, I want them to be able to wear gloves whenever they want while working with me. It’s just common courtesy of both parties.  My nurse also said that most people buy gloves in bulk on Amazon, so that’s what I’ll do. To me, that’s a flaw in the system, but it’s one not worth fighting for—there are far more important issues to be advocating for!

Another example of something that isn’t covered by most insurances is a power Hoyer lift. Several years ago, I wrote about getting several pieces of medical equipment to make things easier and safer for my caregivers. One of those pieces was a Hoyer lift.  It was my very first time using one, so it was a learning curve. Unless there are very specific circumstances, Medicaid will only pay for manual Hoyer lift. While manual Hoyer lifts do the job, it quickly became very apparent that a power lift would be so much easier not only for me, but especially for my workers. In today’s world, where caregivers are so hard to come by, making things as easy as possible is imperative. So, I used my personal funds to purchase a power lift. While I’m trying not to reveal too much about personal finances, I do have an ABLE account which allows me to save money that can be used for disability related expenses without losing my benefits. I bought a power lift and sling using that account. It makes things so much easier. The manual Hoyer lift is at my parents’ house and we use it when it when I’m there.

Manual wheelchairs are another example. For obvious reasons, if you have an electric wheelchair paid for by insurance, they usually don’t fund another manual wheelchair. Although, I don’t use them much anymore, I’ve bought a few manual wheelchairs out-of-pocket. When I was younger, I used them a lot more, but my body has changed and it’s really not comfortable to be a manual chair for an extended period of time anymore; however, I need one to be able to visit relatives’ homes.

There are several other disability-related things that my family and I have paid out-of-pocket for over the years. Everything from wheelchair accessible vans to clothing protectors, there have been a lot of things we’ve paid for to make life better for me. While, I can’t lie—I wish more than anything I could spend my money on things like gas for a vehicle or new sports equipment for my children—I’m grateful that I have a great family and I have at least some ability to purchase those extra but essential things that help me live the best life possible!

***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