Financial Realities of EDS
In the past year ive spent approximately 15,000 on non covered out of pocket medical costs. This includes therapy, durable medical equipment, hearing aids, dressing changes, and personal attendants.
I have insurance. This is what insurance won’t cover.
I require personal attendants between 6-12 hours a day. Right now I pay them out of my own pocket (savings + inheritance, i have no income) around $3-400 a week.
I applied for a government waiver to pay for these services, but its been 4 months and a determination has yet to be made. I worry about my finances. My inability to pay would drastically lower my quality of life.
I also applied for disability through social security survivor benefits. What that means is because my mom passed away before she collected social security, I can collect it for her. However, usually they only do this if you are under 18. BUT you can also collect if you are disabled. Its different than SSDI and SSI. I didnt have to work to collect it, but its more money than SSI. However, this process will likely take 6 months to a year.
Meanwhile, I am headed back to school this fall and need to pay tuition. How can i afford that when i can barely afford medical care? I dont want to take out loans. I dont want to drown in debt after graduation.
This is all under the affordable care act. Without it I will not have access to my feeding tube formula which keeps me alive, my infusions which control my dysautonomia, my anti-depressants, the meds that keep my bladder and bowels working, and several upcoming surgeries.
#iamapreexistingcondition and i dont deserve to die or go bankrupt.