There is currently a huge caregiver crisis for disabled individuals in the U.S.
This firsthand account reflects a growing national conversation about the caregiver crisis for disabled individuals in the United States. A Psychology Today article (November 2023) emphasizes the increasing societal burden of adult caregiving, highlighting the emotional and financial stress placed on caregivers. In parallel, Harvard Health (May 2024) brings attention to the often-overlooked impact on caregiver well-being, noting that nearly 75% of caregivers are over the age of 50, and more than three-quarters are women—demographics particularly vulnerable to burnout and health complications. Tackling this crisis demands systemic reform: increased compensation, professional support for caregivers, and policies that invest in home and community-based services rather than defaulting to institutional care.
Following the car accident that left me a quadriplegic at 32, I had imagined the long-term care social safety nets that surely must be in place would catch me. I’d paid into the U.S. tax system: working in the trades, supporting my child independently, spending.
But, I hadn’t saved.
Medicare and Medicaid would cover my medical care and durable medical equipment such as a power wheelchair. The government programs would also provide accessible rides to doctor appointments, and limited home and community based services.
‘Limited‘ in my case meant I could hire a personal care attendant for 40 hours per week. That broke down to just a few hours of care each day. I didn’t need much more care than that, but I needed supervision in case of emergency or in the event I needed something that required use of hands or feet. The spinal cord injury I had sustained had been to the C4 vertebrae in my neck resulting in loss of all sensory and motor function from the shoulders down.
After a few months spent in inpatient/outpatient rehabilitation, I rented a house with my brother. Our rural community didn’t have a homecare agency, but under Medicaid I was allowed to hire my family members or friends through an agency in the city. This afforded me the opportunity to stay out of the nursing homes for several years.
Some states pay family members to care for a disabled family member but wages are low and many states don’t offer that option. Putting all the caregiving of an individual with a high level of need on family can also cause caregiver burnout, and result in parent-ified children, and infantilized adults. My daughter and I wrote an article about our experience for New Mobility Magazine a couple years ago.
For years, my family sacrificed their careers, time and, sometimes, emotional stability, to keep me out of the facilities where Medicaid’s institutional bias seemed determined to put me. Five years after my injury though, lack of support for my little family landed me in assisted living where I would experience the profit driven quality of care typical of these institutions, and the exploitation of direct care labor within them.
The U.S. is in the middle of a nationwide caregiver crisis. Direct support professionals like caregivers are paid on average just $15.60 per hour, and usually offered no benefits- so it’s no wonder employee turnover rates range from 35 to 90%. The struggle to teach new caregivers my routine is a constant challenge. I have experienced this personally both in facilities in which I have lived and among caregivers I have hired in my home.
I won’t romanticize the job. I mean, you’re often dealing with bodily fluid. But it’s a noble career in every sense of the word, to provide care for people who cannot provide it for themselves. The work is difficult and can be exhausting. The sacrifice it takes to do the work unpaid and underpaid can hardly be overstated.
I ask my caregivers how and why they chose the career and the answer was unanimous. They care about people.
Too often their empathy is taken advantage of by those who exploit direct care attendant labor.
After four years in assisted living homes that compromised my care and skilled nursing facilities where my health deteriorated, I’m living independently now.
Subsidized housing, part time work, and disability checks make it possible.
I still need a full-time roommate. I still only receive assistance a few hours per day. I’m still rejected for medical appointment transportation because of limited community resources. I’m still rejected by health care professionals who say that transferring me onto an examination table is a liability for their staff. Both being services I am entitled to.
Living with a spinal cord injury is harder than it has to be because of the degree of ableism still experienced in American society.
Institutional bias is not exclusive to the mobility disability demographic, but those with intellectual disabilities too. Most caregivers of people with IDD report that their caregiving responsibilities had an impact on their employment.
Yes, we are in a caregiver crisis. But it’s not without solutions: wage increases, prioritizing home based services, increasing oversight in facilities.
With Medicaid slashed we are likely to see the opposite. Immigrant caregivers too scared to come to work. Rural communities like mine losing funding and providers leaving. I’m already hanging on by a thread.
The disability demographic can be joined by absolutely anyone. I ponder why the quality of our lives is not at the top of legislative lists. I’m appalled that anyone imagines cutting resources to poor, elderly, sick and disabled Americans is a better idea than taxing the wealthy.
Cassandra Brandt is an Arizona based author and advocate for marginalized communities. Quadriplegic following a 2015 spinal cord injury, Cassandra enjoys philosophy, literature, nature and family. You can find her books on Amazon.
