For over 900 days, I have been in a nonstop fight with Horizon NJ Health to get more personal care assistance (PCA) hours. 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’s standards, I’m not disabled enough to live.
I need PCA hours because simply 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. To ensure my safety and wellbeing, 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.
You may now be asking, ‘uhh…how?’ PCA hours are determined by a rubric: a set of guidelines that determines how disabled someone is (this isn’t a joke). Not being able to go to the bathroom by yourself gives you a certain amount of hours, but needing to use a diaper will get you more. Before you ask, no, I’m not going to wear a diaper. If you have a trach you’ll get more hours than someone who uses a non-invasive ventilator like me. Besides this tool, no other external factors are ever considered. Not even, you know, how long you’d be completely alone and have the greatest risk of dying. Also, at no point does the person who determines the allotment of hours ever meet or speak to you. We can’t even FaceTime. In the most dehumanizing fashion, your entire life is reduced to a couple pieces of paper with a rubric created by non-disabled people, who could never fathom my daily struggle for survival.
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. I explained my case and my circumstances: how I lost two years of my life, how I can’t sleep at night because I fear for my life, and how I’ve lost friends from the same lack of care I’m currently facing. Everyone was in agreement that I need 84 PCA hours per week, but words aren’t going to save my life. In the vast majority of cases like this, the judge will rule in favor of the patient. My judge? She 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 1 “point.” According to Horizon NJ Health’s own rules, I’m not disabled enough.
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.
