The system for disabled adults is a failure. I assumed that in the US, a developed country, there would be systems in place to protect disabled adults, to ensure their survival. That, it turns out, is not entirely true. I have been unfortunate enough to have experienced this, particularly this past week. The past week I have spent hours on the phone, on hold. I have been walking around in a sort of trance, this heavy truth hanging on me, not letting me be truly present, but instead helpless and terrified.
At the start of this month, my insurance was changed from a plan that covered 100% of my medical bills to one that would now put me in charge of huge amounts of my medical bills. With this new insurance, I now would have to pay 20%, plus copay, plus deductible, plus a big chunk of my disability check to pay for this “service”. I’d just like to take a moment to reflect on this idea. My medical care easily costs more than $1 million a year. I am given less than $10,000 a year in disability payments. My income is less than 1% of my medical bills per year, and they are asking that I pay 20%.
There are programs that can help low income folks with these costs. I am very good at finding programs that can assist my family. It’s one of my superpowers. So I applied to these programs, doing everything right. Here is the big problem, you can only apply for these programs up to 30 days prior to the insurance switch, but it takes the offices more than 90 days to process. So even if you do everything exactly as they ask, you cannot possibly get immediate coverage. This is only scratching the surface of the complicated rules that tend to interfere with each other. The rules tend to change often and conflict with other rules.
I have been told at these offices that disability services are a privilege, not a right. I really thought we were past this, as a society. I thought that in the developed world, we took care of the unfortunate. The system as it is is not enough to care for young disabled adults. This system is not great for seniors either, don’t get me wrong, but there are many gaps in the rules with the assumption that young people are not disabled. So this is where I am at… I am very ill and need care, but I do not have good enough insurance to get the care I need. This insurance switch is specifically because I am disabled. I am getting less medical coverage because I need so much more medical care. The disparity of deadlines between offices means that I will not have enough help to receive the medical care I need, nor will I have any drug coverage, for 90 days, despite following all the rules. Each month, I have 30+ doctors visits/procedures, thousands of dollars of medications, medical equipment, and a hospital admission for infusion. I cannot access this without proper health coverage. All I can do is wait. I am sick, and getting worse. I don’t know how long I can wait without access to medications, without doctors. I want to be angry about this, but, honestly, I think I’m too scared to be angry.
Disability services are a privilege, not a right? I guess living is a privilege, not a right too?