The High Price of Health: How Chronic Illness & Disability Hinder Educational Opportunity
Education was a runway for me—elevation, freedom, new horizons. From a young age, I believed that if I displayed my merit, mettle, and mind with unwavering dedication, the educational opportunity would be at the end of my expedition. I was looking forward to liftoff.
Many forces outside of my sphere of influence placed obstacles in my path. I couldn’t outwork or outsmart every hurdle—I often had to go around, climb up to see another way, or double back.
Through no fault of anyone’s—no lifestyle choices, moral failures, or lack of work ethic—my mother was diagnosed with a rare, lifelong autoimmune disorder. She was a dedicated and impactful Montessori school teacher until she could no longer work. It took several years and significant legal fees to receive the minimal social security support she was eventually awarded.
On its face, this is a story about my mother’s barrier to opportunity. But it’s also a story about the children in families like mine across the country—those working relentlessly to build more, provide more for their parents and future families, and take up the reins of contributing to their communities. An analysis of data taken over five years through the American Community Survey shows that 4.4 million parents in the United States have a disability. Bivariate analysis reveals a clear story: While 11.4% of parents without a disability experience poverty, the figure jumps to 27% for parents with one or more disabilities (National Research Center for Parents with Disabilities, 2022).
Here’s where the rubber meets the road—Remicade, one of the only effective immunosuppressant drugs for treating a potentially fatal and always lifelong illness, costs upwards of $150,000 every year. Even with intense premiums for the best insurance, the cost is crushing.
Medical expenses are not factored into federal or Texas financial aid calculations. On paper, we didn’t quite qualify for the full Pell Grant—indeed, if we just lived more frugally, we could contribute at least a thousand dollars toward my education. But there wasn’t an option to not spend that money on medical expenses. Every dollar, and much more than we ever had, was dripping down an IV each month. There was no wiggle room for my family to save or contribute to my or my brother’s education.
After applying only to the few schools that claim to support 100% need-based aid, fighting the financial aid office each year for four years, receiving significant merit scholarships, taking out the maximum loans each semester, and working two jobs throughout college, I am proud to say that I have earned my bachelor’s degree and am now following in my mother’s footsteps, working in education.
Year after year, the cost of chronic illness on generational opportunity remains invisible. Allow me to bring the price of this barrier to accessing higher education into the limelight. On average, lifetime government expenditures are $82,000 lower for college graduates than for those whose highest credential is a high school diploma. College graduates also contribute $273,000 more in taxes. That net benefit is $355,000 (Association of Public & Land-Grant Universities, 2024).
It’s time to reinvest some of that net gain into financial support for higher education. The return will be substantial. Factor medical expenses—especially for young adults in families with parental disabilities—into the formula of financial assistance.
McCaul, Morgan, TX
References:
Association of Public & Land-Grant Universities. (2024, July 31). How do college graduates benefit society at large?. APLU. https://www.aplu.org/our-work/4-policy-and-advocacy/publicuvalues/societal-benefits/
National Research Center for Parents with Disabilities. (2022). Prevalence of Parents with Disabilities in the United States. Brandeis University, Waltham, MA.