Financial Stress After a Spinal Cord Injury: Personal Experiences with Paralysis

Managing to be able to keep up the amount of money I need to live life the way I—as close to how I used to as possible, and be able to afford the kind of help that I now require is tricky. As I said, since I don’t qualify for lot of programs like Medicaid, I have to be private pay, so finding help is expensive; I mean this is an expensive disability. I need caregiving help and one of my goals, because I realized the financial burden that it was going to present, was to become as independent as possible, so I wouldn’t need a caregiver eight-hours-a-day. Now I’m down to kind of two-hours-a-day in the morning, and once I’m up and dressed, I’m off on my own for the day.

Yes.  Well, obviously everything is going up, and my husband and I pay the bills for the household.  So, my other son moved back, and we have him temporally because he is going to be moving on.  He contributes, but he won’t always be able to contribute.  Gas for instance, my husband with all the driving, the gas becomes very expensive.  We pay for the supplies, the supplies are not covered.  Supplies go up, and up, and up.  Enemas, for instance, when they started, they were 46 dollars, now they’re 80 dollars, and we pay for them.  We don’t have any source to cover that, so it’s just little things that keep adding up.   

Major financial concerns for me today obviously is my home, that's got to be number-one. Not only do I need provide a place for me to live, I have to be the provider of my family, a place for my kids to live in and grow up in. So, that was rule number-one. Fortunate for me with working and so forth, I've had the ability to, just recently, I just built my own home, and I built fully wheelchair-accessible house I'm about—probably ninety-five percent wheelchair accessible, the only thing I don't have access to is my basement yet. But, you know, that will be coming; I ran out of funds. So how do you get down those stairs?—your butt works very well as you go down.

Before my injury, I was pretty financially astute, so I made sure I locked away things away for a rainy day.  So, this is one of those rainy day events.  And I also live now below my means, so that way I don’t spend above what I need to spend because of my injury.  A lot of the stuff I do now is because of my new life.  I’ve had ideas before of being conservative and such, and being very cautious and fastidious about what I do.  But because of this, it’s like you can’t play around any more.  

For the future, for Christopher to be able to live on his own and complete school.  And of course, get a job, and be able to make it financially on his own—like any parent.

Oh none, no. I work, he works. He's the principal in a firm; they're very well established. We live in a wonderful, wonderful neighborhood. Our daughter goes to school, she has no loans, since we can pay for it. We're very lucky, we're very, very lucky, and money fortunately is not one of the concerns we have at all, at all. We're very lucky.

I mean we had a, there was a settlement, and I invested it wisely and took my grandfather’s advice. And it’s still, 24 years later, helping.

I say I was 22, 23 at the time, and working fulltime but just unaware of so much. Had access to so much through my employer, meaning insurances—short term, long term, disability, different things like that—and had none of it in place, none of it. I’m now in financial services in the insurance field, which is a blessing at this point, but I think that’s what actually helped me get to where I am now. But I ran into a brick wall because I did not prepare.

With caregiving there is an expense, I mean that is a significant expense, and fortunately insurance is able to subsidize some of that. And, that though is the most significant financial strain. Other than that, there’s not too much out of the norm I would say.

I'm fortunate, I’m blessed.  I have a great job, I’ve been incredibly successful at it and I’m good at saving money.  I tell people that I want to make sure that I can experience enough in life, and travel and do things I want to do.  Because, I don’t want all this money that I work hard for, that I’ve saved up, to go to a nursing home, or care that I’m going to use later.  I want to use it up and figure out how to manage the rest of that.  

She's working with a really good company, and she is in their health program, and so most of her care is paid through that.

other financial concerns are what is he going to do if something should happen to us.  I am very worried about that.  He has applied for Social Security, he’s been denied, which is what happens in most cases.  And, you have to appeal and go through that system.  But, I worry about his future and what’s going to happen for his support.  

My continuing financial concerns revolve around the future. I have children who need to go to college. I have retirement one day, you know. While I have always said that you need to be pursuing your happiness vigorously or you are wasting your time, you still need to chisel away the opportunities for the future, because I don’t want to work forever, as much as I love what I get to do for a career. So, I think currently I have the money that I need for my hobbies. I have health insurance for myself and my family. We put dinner on the table. So, all of the standard things are I think under control in our lives. But still, we all, I think worry about putting the future together properly for ourselves and our families.

No more than the average person. I mean you know, in that and then you know, if you have some kind of catastrophic, I mean for someone with a spinal cord injury, there could be a catastrophic injury. You know, some kind of complication I should say that is always in the back of your mind like “man, if there’s some kind of complication and I can’t do something that I do every day.” For example, when I get sick, I mean you know a simple head cold might take me out where I can’t go to work. Whereas when I was able-bodied, it would be like, “head cold, what are you talking about? I’m fine.” So, now it is like you can’t mess around quite as much with something like that.

That was the main issue was financial issue because you have all the doctor bills. And I stayed in the hospital the whole entire summer, so that was at least three months, almost four months that I stayed in the hospital. So, that was a humongous bill. Then when I got out, and you can’t work, you can’t do anything. Then my mom, she had to pretty much take care of me because I couldn’t do anything at the time. And so, my step dad, he stepped in and helped a lot financially with my mom. Eventually once my case was settled, I was able to pay off the bills that way, and then once I got on Medicaid, Medicare and Medicaid, they helped as well.

Living on a fixed income if you’re on disability.  Fortunately for me, I get a disabled pension, which helps kick that up a little bit.  But raising a family with kids is not the same as being an old person that’s retired and on Social Security.  You got to be creative with the things you do, it’s definitely a change in lifestyle.  

I work for a small company; I’m always concerned that, you know the way the economy is, that if I lose my job, what would we do?  I’m concerned because I know that Kelly’s thinking now it’s time for him to start going back to work.  He wants to do something; he doesn’t know what he wants to do.  He’s kind of getting a grip on that though, he’s thinking about taking some classes.  I’m concerned that, what’s going to happen when he decides to go back into the job world, job market, what’s he going to find?  I’m not so concerned that he has to be the breadwinner again, or that he has to be the one bringing home the money.  I more concerned though, is he going to make enough to support what we need, you know what I mean?  We’re getting by okay with what we get with disability and things, but I’m more concerned is, what if he goes off of disability, and decides to enter the job market, and then has problems and can’t work?  You know, that type of thing, that concerns me.