By Allison Jonergin
This may be a taboo topic to talk about, but I feel it’s important.
Social Security Disability Insurance benefits alone are not always sufficient to provide for a decent life. Despite being permanently disabled, my benefits do not surpass the Federal Poverty Level (FPL), the guideline used in determining someone’s financial eligibility for certain federal assistance programs. The FPL for an individual in 2021 is $12,880.
Supplemental Security Income (SSI) is one such program. However, someone receiving more than $814 in unearned income per month is ineligible, which includes SSDI benefits. Free food and shelter are also counted as income, meaning people like me who live with family at no cost are even more likely to be deemed ineligible. SSI also caps your allowed savings at $2,000, severely restricting one’s sense of financial security, let alone growth.
Fortunately, there’s an alternative to storing funds in a bank account.
In December 2014, Congress passed the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act, allowing those with disabilities that began prior to the age of 26 to save for eligible disability expenses in a tax-free savings account.
In addition to being tax-free, these funds are exempt from determining whether the individual is financially eligible for federal assistance programs, up to $100,000.
I’m supremely thankful for this opportunity to save for the future without fear that these small contributions will disqualify me from receiving services I rely on every day, like Medicaid.
In the short term, however, weighing my prospects of ever living independently with a rent or mortgage I can afford is more problematic, even with a roommate. I’m lucky in that I’m able to work part-time, but my work history is spotty at best. I’ve never enjoyed the benefits that come with full-time employment, meaning sick days are unpaid, and so is time off taken to recover from surgeries. I’ve left every place of previous employment because my symptoms proved too great a barrier in completing my required duties. Moreover, they’ve made finding and securing a new job extremely challenging. The jobs I’ve been able to take, including my current job, are considered entry-level and pay as such.
It’s hardly practical to picture and prepare for a future wherein my ability to work won’t be interrupted by more surgeries, as I’ve had five surgeries in the last five years. I haven’t yet come up with a solution that would allow me the financial freedom and flexibility to independently afford monthly bills based on my monthly income should I ever venture off to live under my own roof.
I’ve learned of programs that greatly assist disabled individuals in receiving loans to purchase a home, but without an income that covers my personal and medical expenses as well as the mortgage, these programs too feel out of reach.
All of these factors combine to cause my anxiety to skyrocket and my self-confidence to plummet. I don’t know what the future holds, but I can be certain it holds uncertainty.
Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She suffers from multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.
The North Country Center for Independence in Plattsburgh, NY is always looking for writing by people with disabilities in the North Country, on disability-related topics. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.