After months and months of being stonewalled, lied to, and denied every step of the way, I exercised my right to take Horizon to court. It was there I learned that going to court is nothing like how it is in movies, and the harsh reality that based on Horizon NJ Health standards, I’m not disabled enough.
I need additional personal care assistance (PCA) hours because being alone could kill me.
My type of Muscular Dystrophy leaves me unable to feed, bathe, or dress myself. I need help going to the bathroom, getting in and out of bed, and countless other things non-disabled people take for granted. Even worse, I have trouble swallowing and I am at high risk of aspirating on my own spit if not for assistance. My parents’ bodies are starting to break more than mine and my girlfriend works all day long.
I need 84 PCA hours a week, or 12 per day (I currently have 60, but my life doesn’t stop on the weekends). Even when presented with all that information, Horizon NJ Health says their hands are tied.
PCA hours are determined by a set of guidelines that determines how disabled someone is: Not being able to go to the bathroom by yourself gives you a certain amount of hours; needing to use a diaper will get you more. If you use a breathing tube, you’ll get more hours than someone who uses a non-invasive ventilator like me. No other external factors are ever considered, and at no point does the person who determines the allotment of hours ever meet or speak with you.
After years of being lied to about which program would help me, lost or “forgotten” applications, multiple official denials, and 765 days of countless phone calls, letters, assessments, faxes, panic attacks, and listening to terrible hold music, I was finally able to meet with representatives from Horizon NJ Health in court. In the vast majority of cases like this, the judge will rule in favor of the patient. My judge said she doesn’t “have the authority to do anything.”
The Horizon representatives reiterated that they had to follow the guidelines, but suggested I apply for at-home nursing care to supplement my PCA hours. I went through the assessment and based on that rubric, I don’t qualify — by one “point.”
I always knew the healthcare system was going to fail me, but I never thought the judicial system would too. I’m now on my own, fighting for bare minimum care against a corporation that would rather see me dead than lose a couple bucks.
If my parents neglected me like this they would be thrown in jail, but it’s OK for Horizon NJ Health to do it because it’s a “business.” I prefer to call them what they truly are: a death panel.