The insufficient supply of personal care workers to meet the demand of an American population increasingly in need of care has been the focus of a number of recent articles in major media outlets. The New York Times, Bloomberg, The Hill and The Washington Post are just a few of the platforms to tackle this emerging national crisis.
An aging baby boomer population, combined with chronically underfunded state Medicaid programs, low wages, lack of benefits and tough working conditions for home healthcare workers, is creating a dire situation for people who rely on all types of personal care. The New York Times reported in 2017 that “if nothing is done to draw more workers into the field, there will be a shortage of at least 350,000 paid care providers by 2040.”
While much of the national concern about the home health labor shortage is focused on the impact for the growing elderly population, the shortage is already having a devastating impact on the disability community. From New York to Minnesota, people with disabilities who rely on personal care attendants are increasingly struggling to maintain sufficient care hours.
In May, the Minneapolis Star Tribune published a piece titled, “Shortage of home health workers forcing young Minnesotans with disabilities into institutions,” which profiled three women who were stuck in nursing homes or assisted living facilities because of the difficulty of maintaining personal care assistance at home.
One of those women is Lauren Thompson, a writer, disability rights advocate and Ms. Wheelchair Minnesota 2016, who used the platform of the pageant system to warn of the impending home health care crisis.
Thompson moved out of her childhood home in 2011, and initially moved into a group home for people with disabilities. She then moved into her own home, but after being forced into a nursing home for a short period following a surgery, Thompson put herself on a waiting list for an apartment in 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.”
In Minnesota, the home healthcare crisis is making it difficult for even those who have years of experience in PCA management to maintain sufficient, quality care at home.
“It’s always been a problem finding good employees with longevity, but it’s gotten more difficult to retain them,” says Roxanne Furlong, who has been directing her own in-home care for years in Inver Grove Heights, Minnesota. “All of my good PCAs who’ve worked for me usually stay for more than three months, but move on looking for higher pay,” adds 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.”
For young people like Thompson who see the labor market for PCA services continue to tighten, the crisis is increasingly making for a terrible decision: try to live independently but risk being forced into a nursing home for an indeterminate amount of time if your care falls through; or move into an assisted living facility to guarantee your basic needs are met. As Thompson’s experience in assisted living shows, the safer option might be better than a nursing home, but that’s a life that no young person deserves.
My name is Lauren. I’m 30 years old and I live in Champlin, Minnesota. I am a writer and a disability rights advocate. In my free time, I like to watch movies, go arm-biking and to simply be with my friends and family. But, lately, what I feel like I’ve been doing most of all in my life, is waiting. I wait because I have cerebral palsy and rely on personal care assistance to survive.
At the assisted living facility where I now live, staff help me with everything from getting me out of bed in the morning, to getting dressed, cooking and cleaning. But I constantly have to wait for help, as the client to staff ratio is often 11 to one. To balance meeting the needs of many different clients at once, the aides are forced to prioritize their work.
This means the staff come to me whenever they have a free moment. Sometimes I have to get up earlier than I expected, but usually I have to get up later than I expected. Sometimes the wait is just a few minutes, sometimes it could be an hour or two. I just don’t know until they show up, so I need to be prepared either way. I’ve gotten in the habit of keeping my medication in bed with me so that I don’t have to worry about missing a dose while I’m waiting. There have been many times I have had to cancel my plans for the day because the staff haven’t been able to get me ready in time. At night, I have a set bedtime. If it’s in my control, I schedule events in the afternoon — if they’re in the morning or later at night, I can’t participate.
Constantly, there is a sense of urgency coming from the staff — they have 10 other people to think about helping besides me. Sometimes that means trying to get everything done as quickly as possible, sometimes that means doing my care by priority, in bits and pieces, coming and going, doing things when they can.
When my care is done too quickly, mistakes are made: My clothes are put on wrong, my hair is a mess, or the aides just forget to do something. Then they have to come back, and I never know exactly how long I’ll have to wait. I feel a personal obligation to simplify everything — I have very basic meal prep, simple cleaning routines and habits. The more complex or complicated the task, the longer I have to wait for it to be done, if it can be done at all. My apartment has gone weeks uncleaned, and I often miss my exercise routines.
I want to emphasize that the staff who are helping me now have the best intentions. But with the circumstances they’re put under, they’d need five hands to do all the work they’re expected to.
Advocacy, meeting with officials and my community is how I keep myself intact — it makes me hopeful and happy amongst all of this crap. Apart from my own needs, I wanted to help the PCA community of Minnesota, so in 2015 I started PCA Connections Minnesota. It’s a PCA services support network on Facebook where clients, PCAs, families and other stakeholders of this community in Minnesota connect to each other. People post want ads, share information, and support one another.
It has since grown to 2,000 members. I am grateful to be able to help people through this group, but I am even more grateful to have it there for myself. When I’m stuck at home and have nothing much to do, the group helps me break through the isolation, to see that I am not alone.
I see the magnitude of the crisis and, as an advocate, know that I have work to do. But, I haven’t been able to do as much work as I’ve wanted, in large part, because of this crisis. Life in an assisted living facility makes me feel like I’m on a broken assembly line. I absolutely feel stuck. Stuck in every way. Because, it is difficult to have a job, to be a contributing member of society, or to even visit friends when you can’t know what time you’ll be able to get out of bed in the morning.
— Lauren Thompson
• “Shortage of home health workers forcing young Minnesotans with disabilities into institutions” Minneapolis Star Tribune, startribune.com/shortage-of-home-health-workers-forcing-young-minnesotans-with-disabilities-into-institutions/481835481/
• “Home Health Care: Shouldn’t It Be Work Worth Doing?” The New York Times, nytimes.com/2017/08/29/business/economy/home-health-care-work.html
• “Americans Will Struggle to Grow Old at Home” Bloomberg, bloomberg.com/news/features/2018-02-09/americans-will-struggle-to-grow-old-at-home