Lauren Thompson shown smiling, wearing a black top with a sash over it with the text, Miss Wheelchair America 2017 and Minnesota stitched on it

Lauren Thompson, Ms. Wheelchair Minnesota 2016, has been caught up in the very same home health care crisis that she used her platform to spotlight.“The workforce shortage has made it unsafe for me to rely on personal care assistance,” says Thompson, 30, a wheelchair user with cerebral palsy.

Since moving out of her childhood home in 2011, Thompson initially lived in a group home for people with disabilities. She then moved into her own home, but struggled to maintain adequate PCA care. After being forced into a nursing home for a short period following a surgery, Thompson decided to move to an assisted living facility to ensure her care needs would be met. “Initially, it was a relief to be in assisted living care because managing home health care was a struggle,” she says. “But I have no say in the staff who help me or their training, and I have decreasing control in my care and how it gets done, when it gets done, if it gets done.”

Minnesota is currently undergoing a labor shortage in personal care workers so severe that many stakeholders are calling it a crisis.

Job vacancies for home health care workers have more than doubled in just two years — with 3,110 open jobs in 2015 climbing to 7,776 in 2017, according to the Minnesota Department of Employment and Economic Development. The shortage is due to a number of factors that include low pay, overloaded schedules for individual workers and a lack of benefits. In Minnesota, Medicaid reimburses home care agencies at $17.01 per hour of care, which means that many workers are paid in the $12-13 per hour range. With a historically-low unemployment rate of 3.1 percent in December 2017, there are plenty of jobs available in Minnesota with similar pay rates and better working conditions.

“People who work in home health care do it because it’s a worthy experience and they know that they’re helping people and that’s the only reason why they do it. It’s not really a sustainable career and there is no real opportunity for advancement,” says Thompson.

Others who rely on PCAs in Minnesota speak to a similar situation. “The $11.50 per hour wage can’t compete with $17 per hour at Chik-Fil-A … it’s tough! You need to be hella creative, and post your PCA ad everywhere,” says Tiffiny Carlson, a longtime New Mobility contributor.

“It’s always been a problem finding good employees with longevity but it’s gotten more difficult to retain them. … All of my good PCAs who’ve worked for me usually stay for more than three months, but move on looking for higher pay,” says Roxanne Furlong, a contributing editor for New Mobility who has written about strategies for PCA management. “I talked to my social worker last year about how hard it is to find good quality help and she said she’d recently called 39 agencies to find someone for one of her clients but none had anyone available.”

With an aging population driving up demand for home care services, and chronically underfunded Medicaid programs and low insurance reimbursement rates limiting the supply of workers into the field, there is little relief in sight. The labor shortage is only expected to deepen unless significant funding and training changes are made at both the state and national level.

For now, Thompson. along with many other young people with disabilities who rely on personal care to survive,  are stuck in an increasingly hopeless situation — where despite the inherent lack of freedom and agency over your life, institutional settings increasingly appear a safer bet than maintaining adequate care at home.

“When people with disabilities struggle so much, and when we have to compromise so much, you start to feel like less of a person and like you’re not valued,” says Thompson. “I don’t want to live in the context of, ‘well it could be worse.’ Just because it could be worse doesn’t mean I don’t deserve better.”