(Cassandra Brandt is a regular guest writer for SPINALpedia and a C4 quadriplegic and mom from Arizona. She also writes for Ability360.org and is the author of “Iron Girl: a memoir”)
Growing up I couldn’t wait to leave my little mountain hometown and see the big world. Since becoming disabled, though, there’s no place I’d really rather be. My family and many friends are here. Being a small-town girl has its perks like that, but it has some significant challenges too, if you have a disability.
I crushed my C4 vertebrae in a car accident six years ago. I was loaded onto a helicopter that showed up for me in a nearby ball field. The ER team at my hospital were not as equipped to deal with my level of injury as the urban physicians were. The paramedics knew I had probably broken my neck.
I learned to live as a complete quad with the world class guidance of a team of doctors and therapists at Banner University Medical Center in Phoenix. My caseworker and occupational therapists were very concerned about my desire to go home.
Would there be accessible transportation? Competent doctors? Home-health Nurses? Caregivers?
Living with a spinal cord injury presents multiple challenges that some small towns and communities in rural areas cannot meet.
There may not be medical providers with experience in SCI. Hospital staff may be unfamiliar with SCI care. Transportation services like paratransit may be insufficient. Specialty care may require you to travel. Homecare agencies may not exist and nursing homes may be the only option for a quad.
I struggled with all of the above, but ultimately it was lack of a homecare agency that sent me packing to a nursing home at age 37.
After my stay at Banner, I hadn’t heeded their warnings and had gone home to live with my family. I quickly realized they couldn’t handle my level of care. Medicaid offered me 40 hours a week of homecare but my hometown didn’t have an agency.
An out-of-town caregiver agency that employed family members as caregivers looked like our only option. So we tried, but it was a ton of stress and pressure on my family and I felt like a burden.
The company was a consumer-driven nonprofit that recruits, screens, trains and employs caregivers to any individual that is qualified through the state’s Long Term Care System. Recruiting though, they didn’t really do. In five years they found one local lady to do a few “respite” hours to give my family a break. They told me that they would train and employ people I found on my own, but it was a lengthy process that only led to one part-time position. For the most part my brother who was employed through the company paid other caregivers from the income.
I paid my friends to care for me sometimes and I asked around in my social circles. I posted on social media that I was looking for a caregiver. A lot of the people who tried the job were just opportunists hoping for easy money who disappeared when they saw that my care wasn’t. The company wouldn’t pay (and I couldn’t afford to pay) decent money either, so there was that. Most didn’t last long but I got lucky with a few, one which lasted over a year.
After months and months of trying to keep a caregiver and feeling like a burden to my family when I couldn’t, I finally checked myself in to one of the two local skilled nursing facilities.
I’m too young to live in a nursing home. It hurt to pack up my house and put my things in storage, give up my SSDI check, and visit my family through a window.
Why can’t Medicaid just cover the amount of homecare hours I actually need? Caregiving agencies would open up in small towns instead of, -or at least alongside- nursing homes, because there would be clients!
The big infrastructure package Democrats hope to pass includes $400 billion to expand home based services covered by Medicaid. This is HUGE and it could mean a lot of people can come home from the nursing homes. The package, which still needs congressional approval, would also discuss increasing the pay of direct care workers.
My town is pretty amazing. The accessible transit might suck, but the elementary school fundraised to buy me a van. The doctors might not have experience with quadriplegics, but they have been quick to learn more. I know my town is not lacking in competent, caring caregivers either. But if we can’t offer them a job good, and good wages and benefits, they can’t afford to leave more lucrative jobs. That goes for urban America, too.
I have moved from the nursing home to a coveted bed at one of the very limited number of local assisted living homes. I’m grateful and comfortable but I’m hoping to get my own place again. Even if that means leaving my small town to find the balance of care and autonomy I need.
Read Cassandra’s past posts here