Current research shows that a household with a disabled adult has 28 percent more expenses than a non-disabled adult household to have the same standard of living, which is currently an average of an additional $17,690 a year. (Source: National Disability Institute, The Extra Costs of Living with a Disability in the U.S., 2020.) This doesn’t include the extra expense for households where an adult is in active treatment for a life-threatening disease, such as cancer or lung disease.
People with progressive disabilities and/or treatment for active serious illnesses, can also face bankrupting medical expenses even with excellent insurance, and progressive disabilities and life-threatening illnesses often result in the person having to be underemployed, or unable to earn any income at all. Even for those who turn to disability (SSDI) the amount is less than 40% of their prior income, while their expenses are significantly more than when they were able to work.
Do me a favor? Write down your annual income. Now, multiply it by 0.40. That will give you 40% of your current annual income. Now take that amount and multiply it by 0.28. You will need to subtract that amount from the 40% of your previous income. That will account for the extra expenses that a disabled person encounters (not an ill patient, just a disabled adult.) Now divide that amount by 12. That would be your base income as a disabled adult. (There would also be other expenses, such as insurance premiums, co-pays, and non-covered medications, but we’ll leave that alone for this example.)
So, let’s say you typically earn about $50,000 per year from working. That means that 40% of that is $20,000. That would leave you $1,667 per month. Even without accounting for the 28 percent additional costs that disabled adults incur, could you live on $1,667? Would that cover your mortgage/rent, car, gas, car repairs, home/renters’ insurance, health insurance, taxes, medical co-pays, non-covered medications, dental visits, eye exams and glasses, groceries, wi-fi, basic streaming, etc.? What if you have a pet? Would you be able to cover vet costs, dog/cat food, etc.? So instead of having $4,167 per month as an employed person, you would have to live on $1,667. Could you do that? Would you still be able to do the things your friend that are in your previous earning’s bracket do, or would you no longer have the funds to participate? Would you struggle to keep your home or pay your rent, to pay your property taxes, or pay your car insurance?
This loss of income, and constant financial struggle, leads to not being able to live the lifestyle the person was accustomed to. The lack of money often leads to further isolation as the person can no longer afford things like a night out, sporting events, meals at restaurants, or participating in gift giving. Even being invited to something as innocuous as a potluck is difficult when you are food insecure, especially when none of your friends or colleagues can even conceive of being in that situation, based on your former lifestyle.
The change in lifestyle caused by lack of mobility, the effects of strong medications, hospitalizations, medical procedures, pain and fatigue are only the tip of the iceberg when it comes to the isolation, anxiety, and loneliness of having a chronic illness or a progressive disability. The compounding effects of financial instability, food and medication insecurity, and medical treatment costs leads to stress and distress that causes trauma and anxiety which lead to even more isolation and loneliness. The financial burdens of chronic illnesses and progressive disabilities are more complex and far-reaching than most people realize.
