One of the most challenging things living with a spinal cord injury is the finances. It certainly isn’t the first thing I initially thought of. I don’t think it ever crossed my mind. I’m sure the financial wheels in my family’s head were turning immediately after my injury because they wanted the best care for me. But all I could think about was the scratchy respirator down my throat, the fact I couldn’t move anything, and then the news that spinal cord injuries are not curable.
Over two decades later, my thoughts have changed. This may be hard to believe, but they have literally flip flopped in priority. Every day plagues me with financial worries, and rarely do I think about a cure for spinal cord injury.
Don’t get me wrong. I pray every day for advancements in research that will help many disabilities caused by illness and injury, and I pay close attention to advancements in spinal cord treatments. But it is in no way the thought that motivates me and fuels my ambition.
Money does. The government sends me $890.00 each month for Social Security Disability. I receive $150.00 per month in food assistance, a yearly stipend of $400.00 toward utility expenses and a State run program for home health aide care that pays $10.00 an hour on the books. This is the same rate of aide pay it was twelve years ago.
My eighth grade math teacher started a foundation for me when I was first injured. Every fall we have a golf outing to raise funds for people living with spinal cord injuries and other disabilities. We have been lucky enough to assist people with home modifications, vehicle modifications, physical therapy, medical equipment, medical bills, home health care, computer equipment and so much more. I am also included in the folks we help.
If a disabled individual was allowed to earn a good living, their life would be so, so different…and I believe I can safely speak for all folks who are disabled. And when I say allowed, I mean the following.
My big bad monthly $890.00 check from the government is supposed to pay my mortgage, supplement my food, pay car insurance, medications and all the other basic ”life” expenses we have.
Why not get a job, you may say? I’d love to, but it has to be a job with a significant income attached to it because as soon as I get a job, bye-bye benefits. I will no longer be eligible for home health care, which keeps me out of a nursing home. I would no longer receive food benefits, utility stipend, less medications would be covered… Basically everything except my $890.00 Social Security disability check would vanish.
And when I say ”significant income,” I’m very serious. For kicks, let’s take one benefit I receive… Home health care aides. I’d pay them $12.00 an hour minimum, with my goal being $15.00 an hour. This is a demanding job, one that requires very responsible individuals. People don’t want to work for $10.00 an hour, and frankly, I don’t blame them. After taxes, it barely cover’s most people’s daycare and gas expense.
Doing the math, $12,00 per hour x’s 16 hours a day, (my husband is with me at night so there is no need for 24/7 care,) equals $69,888.00 per year. And that’s at $12.00 dollars per hour, which is still very hard to find good care in that pay range. Being able to offer $15.00 per hour to home health aides would change my life.
Looking for a job is a full time job in itself. The same goes for hiring people. The phone screening, the face to face interview process, background checks, (I’ve had some doozies!:-),) paperwork to get people on the books, etc. It’s a full-time job. And it’s not the job I want.
I don’t want my life to consist of constantly looking for good staff in my home… No disabled individual does. I want to fill my days with working on my business, spending time with my family and friends, taking care of my home, plan day trips on the weekend with Mike and a niece and nephew or so… All the things we do in life that makes life, Life.
Here is the kicker. For a person who is as disabled as I am, good aide care is Ground Zero. Without it, it’s extremely difficult to stay healthy and do any of the things I mentioned above. And regardless of what is going on around me, I have to stay healthy. No ifs, ands or buts. I’ve learned this the hard way and it’s a lesson I do not need any more learning in!:-)
Earlier I said money is what motivates me and fuels my ambition. Now you know why. If you are wondering how I am creating What’s Your Wheelchair, Inc. without losing my benefits, there are legal ways to do so. You have to see a lawyer, and it cost a bit of money. Nothing outrageous an individual couldn’t borrow or even make payments on. For me it was about $1500.00 altogether.
I find it so odd no one tells you about this possibility. Of all the bureaucratic people that have to be involved when someone becomes disabled like me, not one has ever brought up this possibility… Of getting a good paying job with out losing your benefits. I had to dig and dig. You’re going to get the benefits anyway… If you are working, you are paying taxes and contributing to these government expenses. Doesn’t that make more sense, and wouldn’t you be encouraged to do so?
My dream, (one of many), is to help the folks in society that find it hard to get or keep a ”9 to 5” job, due to their life’s circumstances, start their own businesses. People who are disabled, people looking to beef up their retirement fund, folks unable to do the job they used to for one reason or another, single parents, Veterans, couples that have always dreamed of having a business together or someone who is simply unhappy with the career they have and is looking for a change.
Since my injury, I’ve job hunted, I’ve been without work, I’ve worked a 9 to 5er and I’ve worked from home. Working from home takes the cake. I still had to work hard, but it offered me so much more flexibility throughout the day and relieved an incredible amount of stress. If an aide was late in the morning, called in sick or simply pulled a ”no call no show”, I didn’t panic. I knew I had the entire day to get my work done. And with the Internet now at our fingertips, you can create an online business that can be run anywhere with a Wi-Fi connection and a laptop.
I believe the majority of the unemployed in society want to work. They don’t want to sit on their couch and collect a menial check. They want to contribute to our economy, to give their family a better life, to work at a job they like, to feel the pride that comes with collecting a paycheck or seeing profit from your own business. That’s not just my dream, that’s the American dream.