Climbing the Mountains: Transitioning to College in a Caregiver Crisis

Posted by Opal Besaw in Life After Paralysis on August 25, 2022 # EmpowHer Stories

OpalI am surrounded by mountains everywhere I look. Usually, the view out the window is a source of happiness, but lately, it is a symbol of stress. I am a senior in high school, headed off to college in the fall. You’re probably thinking, “Oh, pre-college jitters, just like everyone else, right?” Well, not exactly… I am a strong, powerchair-using young woman, who requires assistance for almost all of her activities of daily living. I am currently torn between uprooting my entire life to attend the college of my dreams, or unproblematically attending the college where I live. Given all of the moving parts that factor into my successful college transition, making this decision feels like climbing a mountain.

Missoula, Montana may not look like much, but to me, it is symbolic of my hopes, dreams, and everything I have worked for over the past four years. During high school, I worked extremely hard to maintain a 4.0 GPA. I took all the appropriate classes and scored high enough on my ACT to be admitted to the University of Montana, Missoula. The day I got my acceptance letter, it felt as if all of that hard work was paying off. I had the chance to attend the college of my dreams and be part of one of the most prestigious Creative Writing programs in the country!

In addition to the wonderful academic opportunities presented at UM, Missoula also offers plenty of personal and social opportunities. As a person with a disability in conservative Kalispell, where I’m from, I don’t see a lot of people who remind me of myself. However, I have some disabled friends in Missoula who attended college at UM and have been coaching me through my transition. Because of the very active Disability community in Missoula, I am confident that I would be able to make lots of new friends and have an emotionally fulfilling college experience.

Sometimes I get so lost in my dreams of Missoula, I forget that they are just that, dreams. As much as I would love to attend school in Missoula, that decision is neither safe nor cost-effective for me at the moment. The reality is I will require the assistance of a personal care attendant (PCA) for a minimum of 3 hours each day. I will also need someone to be on call at all times in case of an emergency. Right now, if a caregiver does not show up, my parents could easily fill in the minimal hours I need for the week. However, once I start college, I will be relying on caregivers for almost all of my personal needs.

This would not be a problem if assistants were more reliable. I have had support from caregivers for nearly a decade now, and in that time, I have had countless PCA’s. Some have stayed for a week, while others have stayed for upwards of two years, and still remain my friends to this day, but they could not keep caregiving. There is certainly a deep emotional connection between PCA’s and their clients, and it is difficult when they leave. If I don’t have a consistent caregiver in college, that could cause physical and emotional hardship.

I believe that a major contributor to the caregiver crisis is pay. Their wages have only increased by $5.72 in the past 14 years. An acceptable wage in 2008 is NOT an acceptable or even livable wage in 2022. Low wages mean that agencies often have a hard time finding (and keeping) good caregivers. When they do find someone good, they have a habit of working that person into the ground. This cycle keeps PCAs and disabled people from thriving, thereby plunging communities further into crisis.

Because of the caregiver shortage, attending college at the University of Montana would be unsafe. The proper supports are simply not in place. I implore our legislators to raise the wage for home-care attendants. Disabled people should not have to choose between their safety and their dreams.

Opal Besaw is a young advocate from Evergreen, MT. When she is not helping others, she enjoys writing and reading fiction, and listening to music (especially Taylor Swift). She will attend college in the fall, with the hopes of becoming a children’s author and social worker.

Opal wrote this blog as a part of the Disability EmpowHer Network and the Christopher & Dana Reeve Foundation collaborative blogging program, which uplifts the voices of women and girls with spinal cord disabilities.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.