What Happens When Youth Caregivers Carry Adult Responsibilities — And Systems Aren’t Ready, Author: Crystal K

It was March 22, before my son received his finals grade from last semester’s math class. He was disappointed. I knew it did not reflect his effort, but the months of disruption, uncertainty, and additional responsibilities he had managed. While missing classes at their out-of-state college, he and his brother were caring for their disabled mother and spending weeks in a critical care unit with their father. My son planned to retake his math class over the Summer – redoing his work despite circumstances outside his control.

My children learned about disability and caregiving naturally as our family adapted to my progressive neurological condition, late onset Friedreich’s Ataxia. When they were young, they would offer their small hands when I stepped over a curb and assessed whether places were accessible, or “mom friendly”. Children care for someone they love in many small ways including developing independence earlier than their peers. As they aged, my children became more independent, but my condition progressed and I became more dependent. My husband and I worked to protect their childhood while providing the opportunity to build their own lives.

Then last fall my husband’s medical needs required them to put everything on hold. He was unwell recently and when the guys arrived home for Thanksgiving “break” we had to tell them that his condition was dire. The treatment plan was unclear, but his heart was failing rapidly. The doctors scheduled him for the ICU on Monday, but no one knew how long he would be there. Instead of a break, my sons would be caring for a disabled parent while facing the possibility of losing the other.

As children of sick or disabled parents do, they did the things their parents couldn’t. They decorated our home for Christmas, picked up our pre-ordered Thanksgiving meal, provided transportation for me, and lifted my heavy chair in and out of our SUV. They took care of household needs and worked on their class assignments. Their days were busy and full of uncertainty, medical discussions, and long hours watching monitors, hoping things would be ok.

One night, the pressure surfaced. We talked openly about the enormous uncertainty of everything, and the possibility of becoming heads of household. Would they be returning to school? When?

Eventually, the numbers on my husband’s monitors forced the issue and he required high-risk emergency surgery. I watched the guys as doctors explained the risks involved with the surgery. They were stoic and brave, but the red of their faces, the tears in their eyes, and the air trapped in their lungs exposed the pressure they felt.

We waited eight long hours before the call with the results came. I gave them a thumbs up. Relief came all at once for them. Weeks later we learned how close we were to a different outcome.

This experience exposed the lack of a framework for the burdens of student caregivers. Despite notifying the school and providing documentation from a hospital social worker, the burden was on them to communicate with instructors. The instructor determined how class requirements were handled. Classes, assignments, and exams continued. Responses were inconsistent – if there was one. Two professors gracefully acknowledged their situation and provided relief. Most did not.

In contrast, working adults have legal protections. The Family Medical Leave Act allows employees to step away during a family medical crisis without losing their jobs or being penalized for missed work. Students navigating the same circumstances have no comparable protection. Their academic standing, grades, and futures remain fully exposed to circumstances beyond their control. As both a parent and the person receiving care, it is difficult to witness the gaps that make children vulnerable and may limit opportunities to reach their full potential.

I am proud of the capable young men my sons have become. Living in a family with chronic illness shaped their resilience and responsibility. Through their own tenacity, they will thrive academically and continue building their futures. But youth caregivers should not carry adult responsibilities without systems that recognize and support them. Schools, healthcare providers, and community systems must identify students of any age caring for a parent. When caregiving disrupts academics, the burden cannot fall on the student. Society understands caring for aging parents. It must also recognize students who care for fa parent while trying to secure their own future.

The first step is simple. See them. Understand the burden.

Policy action opportunities:

• Recognize academic enrollment as an equivalent to employment for purposes of developing guidance to protect students with academic relief, grade protections, and cost relief while providing medical support as dependents.
  
• Require institutions to assign a case manager within a defined timeframe when a student discloses caregiving responsibilities, with authority to coordinate accommodations.
  
• Provide funded academic tutoring and progress monitoring for student caregivers to stabilize performance during and after the defined period.