Punished for working

After sustaining a spinal cord injury at age 16, I worked hard to become as independent as possible. I work full-time and stay active in my community and in sports. As a C6-7 quadriplegic, I still need assistance several mornings a week with personal care.

But my hard work only got me kicked off a state program that helped me pay for my personal care. Why? Because I make “too much” money.

So I applied for a state grant that is not income-based to help cover these expenses. I was denied. It seems I wasn’t disabled enough.

Disability is expensive

Life with a disability isn’t cheap. My private health insurance costs over $450 a month [as of 2021, it’s now $800/month] with another $450 budgeted for out-of-pocket expenses. I plan for the future and save for a $30,000 vehicle (the state requires a new vehicle in order to assist with modifications) and put away money for retirement. For an able-bodied individual, this is a balanced budget.

But add into the mix over $500 a month for the personal care that helps me get to work, stay healthy, and be a productive citizen. The budget now runs in the red. I am simply physically incapable of showering and doing my bowel program without assistance. Believe me, I would do anything to be independent in these two areas of life.

Think of it in these terms: Could you pay $30 every time you wanted – no, needed – to take a shower or poop?

More work

So now I’m working a second job. Yes, I could stop putting away money for retirement and a new vehicle to cover personal care. But without a vehicle in 10 years, I can’t work or live independently. If I can’t work, I’ll be on SSDI and Medicare. Instead of paying taxes, I will be consuming them.

What does this teach people? It reinforces the fact that working often penalizes persons with disabilities.

I am in favor of state and federal governments saving money and being fiscally conservative. But placing unrealistic income limits on those of us with out-of-the-norm healthcare expenses simply doesn’t save the government money. When people with disabilities do not work because they live in fear of losing the services they receive, it costs state and federal governments money.

Statistics show that only one-third of people with spinal cord injuries are working 20 years after their injury. This figure represents a significant percentage of our population with valuable skills and experience are not being tapped into.

I believe our country needs to rethink the value of people with disabilities in the workforce. Not only do we have a lot to offer, but it’s a win-win situation for all involved: individuals, employers, the government, as well as our communities.