Being Disabled is Expensive

I first discovered this when I was 18 and still in high school.  I got a job as a live-in home health aide for a man that was quadriplegic, paralyzed from the neck down.

He'd fallen off a railing around a deck when he was 18 and just out of high school, just getting ready to enter the army.  The deck wasn't high, it wasn't a far fall, but he landed in such a way as to break his neck.  Instead of entering the service, he entered intensive care and then a rehab center, where he learned to live with paralysis.

When I met him, he was in his early 40's, divorced with two children, a teenage son that lived with him and a  younger daughter that lived with his ex-wife.  He had a nice home and good job as a computer programmer for the city.

I earned something like $4.80 per hour and worked about 30 hours a week, bathing him, feeding him, doing light housekeeping and meal preparation, taking him grocery shopping on the weekends and picking him up after work (someone else drove him to work on days I was in school).  I got up at 4:30 AM to bathe and dress him and feed him breakfast before showing and getting ready for school, then driving almost an hour to the vocational school I attended.  In addition to my hourly wage, I got room and board.

The state paid most of my wages, out of some program designed to keep severely disabled people out of nursing homes and off Medicaid and welfare.  He paid the rest, as well as paying for my room and board.  I was surprised to find out that although he had a good job and good health insurance (provided through his job), he had to pay out of pocket for a lot of his medical supplies, like catheters and dressings.  He also had to buy a wheelchair accessible van and a home that was wheelchair accessible.  I remember thinking then how expensive it was for him to afford his disability (not that he had a choice about it) and that he was lucky he had such a good job.  I remember wondering what happened to people that couldn't afford their disabilities.

Well, I am not in my 40's and I have learned that most people with serious disabilities don't have good jobs and can't afford nice homes.  I knew the man I worked for was lucky even back then, even when I was just 18 and still in high school, but I know it even more now.  And I know what happens to people that can't afford their disabilities. 

According to one source I found, Americans spend an average of 17.6% of their income on health care.  That's a lot, I think.  Some sources say it's less, more like 11%.  I had trouble figuring out which number might be most accurate.

But this year I think I spent a little over 25% of my income on health care, much of that related to my disability.   And my income is low.  I am above the poverty level, about 200% of the federal poverty level, in fact, by income, but geez.  Have you looked at the poverty level guidelines?  They are low.

Service dogs are expensive.  Isaac is a big part of my health care expenditure.  But he's not the only cost, not at all.  I don't understand how our country expects people with low incomes to pay so much out of pocket for health care.  It shouldn't be this expensive to be disabled.