Monday, October 15, 2012

A Perspective

Over on Twitter last night, Amanda Palmer started an informal poll asking four questions:

quick #InsurancePoll 1) COUNTRY?! 2) profession? 3) insured? 4) if not, why not, if so, at what cost per month (or covered by job)?"

The results, so far, have terrified me. I had no idea that people payed hundreds--sometimes thousands--of dollars a month for insurance in the US, and that people in other countries had no idea we pay so much. Currently, my frequent medical appointments, physical therapy, and all but $7 on my meds are covered by either my parents' insurance or Medicare.

 The fancy bandages I have to buy frequently to protect the wounds my body specializes in are not. Right now those are mostly (supposedly) paid for by vocational rehabilitation, but once I'm out of school that goes away. 

Thanks to Obamacare, I'll stay on my parents' Blue Cross until I'm twenty-six. Because of this, I'm arranging my life so I'll be able to get several necessary surgeries before that birthday. Moreover, I'm afraid of it. 

I can't be refused insurance, but how can i afford it if it'll cost more than my--ridiculously high--rent? Medicare doesn't cover everything, SSDI doesn't give enough to make the rent let alone pay supplemental insurance. Paying my doctors' bills out of pocket won't be an option even if I magically get the stamina to hold down a 9-5, not the part time job I'll hopefully be able to handle on top of writing. 

And I am by no means the worse off of people I know. Instead of partying on her 21st birthday, one of my friends had her parents hunkered down with her in her dorm room waiting for word from the Florida State Medwaiver program, because if they didn't decide to cover her personal care attendants, she'd have to leave school and move the two hours back home--all because she needs help getting in and out of her powerchair and using the restroom. Medicaid, which previously covered her, cuts off when you're twenty-one--no exceptions--and other programs wouldn't step in until she got officially rejected from the waiver. 

I know these aren't the scariest stories out there, but these are the ones that face highly capable college and graduate students who are scared to pursue their dreams--crippled, if you will, not by their disabilities, but because the system wasn't designed to assist them. It was designed to support disabled adults who never dreamed of returning to a job--not young men and women eager to take their place in the world. 

Thanks to the Individuals with Disabilities Education Act (1975) and the Americans with Disabilities Act (1990), we've been raised to think we can do anything anyone else does. Maybe we do it differently, our parents assured us, but we can do it. 

Except we can't. Because the expendable income our cohorts might spend on financing nights out, or even put into savings--gambling on their own health--we must put into the higher costs of daily living. Not having insurance may bite our agemates in the ass. We've all heard the stories of accidents, of undiagnosed illnesses, of pregnancies. But young adults with disabilities get that awakening much earlier, sometimes the day you turn eighteen when your parents say, "All right. You get to call the insurance companies now." 

Those are never fun conversations. They were even less fun for me, because a charge from when I was sixteen had landed on my credit rather than my parents'. While we fought to get it off, I found out how much of your life can be affected by one missed payment, and a crappy credit score.

And, look, I know I have it good. I'm a white, middle class female, living in a nice apartment in a gorgeous city. But the day I graduate all that could be taken from me. I could have to become that disabled family member who lives first in the back bedroom at her (admittedly amazing) parents' house, and then is handed on to her brother years later. I'll fight it every step of the way, but with the cost of insurance, housing, glasses, contacts, medication, paratransit--even grocery delivery--it's a distinct possibility for me and other young adults with disabilities who are much more skilled and have a much better chance of making a mark on the world. 

I want to write young adult books. I know I'm not the next Justin Dart or John Hockenberry. I'm okay with that. But there should be structures in place that let me do that. 


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