The nationwide shortage of direct care workers has caused a crisis in the home health system.
Five years ago, I transitioned from living in a nursing home to living independently in the community. In order to do so, I must rely on services provided by caregivers through home health.
Caregivers cover many jobs and are known by many names: personal attendant, professional care provider, direct care worker, caregiver and homemaker to name a few.
In order to live in my own apartment, my caregiver provides care eight hours a week Monday through Friday. My care worker does my laundry, fills my humidifiers (I do live in Boulder) and performs other various housekeeping.
Some people rely on caregivers to get out of bed and need them to help get bathed and dressed each day. Many care workers also go grocery shopping for their clients. Basically, any activity that requires two people to perform or is impossible for someone with a disability to perform can be a task that requires a caregiver.
I’ve even had caregivers help me with therapy. They would help me use a walker while making sure I didn’t fall. While I use a wheelchair, I can walk with assistance. I don’t have balance so walking alone can be dangerous.
Ever since the pandemic, there has been a shortage of direct care workers. In the summer of 2022, my caregiver fell ill. The home health agency couldn’t find a replacement. I went for two months without care. My family and friends stepped up to help as much as they could. Every day, I would call the home health agency hoping they found a replacement for me.
Not knowing each day if I had help was scary and stressful, not to mention incredibly dangerous. I am a fall risk, and I have a feeding tube because I’m unable to swallow.
Living alone is very isolating. Without daily visits from a caregiver, I was alone most of the time.
In the fall of 2023, I moved to a new apartment and started with a new home health agency. I didn’t have a caregiver for the first two weeks at my new place. While challenging, I also felt empowered. I learned that I was capable of doing daily household chores, but I was exhausted. I found that while learning how capable I was, I still needed help.
I have lived in my new apartment for five months and have been without care three separate times. Each time my caregiver called out sick, I would ask the home health agency for a backup. The agency told me that no one wants to be hired as a backup and that they try to have other staff fill in, but they don’t have enough people.
I am very active in trying to fix the home health crisis. I’m a member of various direct care worker action groups and sit on the newly formed direct care workforce stabilization board that is governed by Colorado’s Department of Labor.
Sadly, the crisis has only gotten worse. With the aging of the baby boomer generation, we are seeing an increasing older population that requires many more caregivers than ever before.
The home health industry has also been corrupted by Medicaid fraud, misinformation and isolation.
Care work is usually paid for through Medicaid. Care management agencies determine how many hours of care a client qualifies for under Medicaid’s Home and Community-Based Services waivers. Case management agencies then provide the care workers depending on the state-approved waiver.
Medicaid funds go directly to the agencies, and they set the salaries for direct care workers.
Care workers receive low wages with little to no benefits. Care workers don’t receive paid time off or sick pay. Since care workers are in people’s homes, they are often isolated from other direct care workers. The combination of these variables has caused a mass exodus from the home health industry.
In addition to providing physical help, direct care workers also fill an emotional need for both the worker and the client. I have developed several personal relationships with my own caregivers, friendships that I treasure.
Just today, I told my caregiver how she had been the only human contact that I had all week. She told me that one of her other clients simply asks her to cook and eat dinner with her. The client entertains her caregiver by sharing her life stories. Can you imagine being paid to eat and listen to stories?
Thankfully, direct care workers are uniting. A group called Colorado Care Workers Unite (CCWU) lobbied throughout the 2023 legislative session to create a direct care worker standards board. Now for the first time ever, workers, agencies, clients, government representatives and disability advocates are coming together to set industry norms that will improve the home health system for everyone.
You too can help, simply by raising awareness. The direct care profession is relatively unknown.
Any able-bodied individual can be a direct care worker. The job is perfect for stay-at-home mothers who have become empty nesters or retirees who are looking for a second career. College students can make excellent caregivers. Many family members provide care for loved ones with disabilities. Medicaid will pay family members to provide care to family members who qualify.
Exciting work is being done to create career advancement opportunities and uniform training within the direct care worker industry. This will improve pay and create benefits for direct care workers.
If this sounds like something you would be interested in, please contact a case management agency and begin a rewarding career as a direct care worker. People like me are desperate for help.
Jenn Ochs lives in Boulder and enjoys listening to music, podcasts and audiobooks while painting or drawing. She is a disability rights advocate and a graduate from Baylor University in Texas, which is where she realized that Boulder is the best place to live.