CINCINNATI — Susan Koller has cerebral palsy, but that had never stopped the 38-year-old from living an active, independent lifestyle. Koller had lived in her parents' Dayton home, where her mother and father once helped her manage her daily functions and personal hygiene. She fondly recalled spending time with her dog and commuting around her neighborhood.
“Fast forward to the pandemic, and oh, my world has changed,” Koller said.
Koller now lives in virtual isolation at the Beechwood Home, a senior living facility in Evanston. She moved in about two years ago after her father died. The responsibility of taking care of Koller was too large and strenuous for her mother to handle alone. Koller initially looked for a personal care attendant to help her so she could stay in her family's home, but she couldn't find anyone qualified and reliable enough for the job.
Koller said she never thought she would have to live in a nursing home for those with neurological disorders.
“When I moved in here, and even now, I look at it and I don’t recognize my life," Koller said. "I look back on my life and go, am I the same person? Who is that girl?”
Advocates for the rights of people with disabilities or older adults who had already been struggling to find personal care attendants said things have gotten even worse since the pandemic hit in March.
Advocates explain that poor wages, and now the added dangers of closely interacting with people who are older, have special needs, and may be particularly vulnerable to COVID-19, is discouraging people from taking on the job. As a result, some people who could otherwise live in the community with minimal support by themselves or with their families are resorting to the risky alternative of moving into intermediate care facilities.
These days, Koller is not allowed to take visitors or go outside without having to go into quarantine, except for Beechwood's patio area. She credits Beechwood's staff for doing a good job taking precautions against COVID and with protecting her and her fellow residents.
Still, having to live inside of an assisted living facility during the pandemic has been a source of concern for her, as they have been hotspots for COVID-19 cases and deaths. The fact that she is also struggling to pass the time is not making it any easier.
“I’m getting tired of my computer, my TV, and my audiobooks," Koller said. "I’m like, okay, I need to do something new.”
Suzanne Hopkins, the director of programs at the Center of Independent Living Options, says that the problems older adults and people with disabilities are having in finding help—and having to alter their lifestyles accordingly—is something that reaches beyond the Cincinnati area.
“There seems to be a shortage of personal care assistants," Hopkins said. "It’s a national epidemic.”
Hopkins, who was born without arms and legs and uses a wheelchair, has had her own challenges finding personal care attendants.
“I’d place ads in various sources: Craigslist, Indeed or Care.com or what have you, and individuals just simply aren’t applying for the position or they don’t follow-up,” Hopkins said.
Hopkins said the problem has grown dire in the U.S. in recent years, most likely because despite how important their work is, personal care attendants are poorly compensated with little opportunity for professional advancement.
“It’s really due to the lack of pay for personal care assistants," Hopkins said. "They really don’t receive healthcare benefits, paid vacation time or sick time.”
The average hourly rate for personal and home care aides, nursing assistants, home health aides and social and human service assistants in the southwest region of Ohio ranges from about $11 to $16 dollars an hour, according to the Ohio Department of Job and Family Services.
In addition to citing poor compensation and few benefits as explanations for the sparse pool of personal care attendants, a 2017 report issued by the Paraprofessional Healthcare Institute (PHI) noted that the widening population of older adults in the U.S. is exacerbating the problem by increasing their demand. The number of people aged 65 and older is expected to more than double by 2050, at around 88 million people. Meanwhile, 52 percent of people in that age range currently already require a form of long term care. This may explain why the Bureau of Labor Statistics predicts that about 1 million new jobs will be needed in direct care like home health aides, nursing assistants and personal care aides by 2024.
However, businesses in the space, like home care agencies and nursing homes, grapple with finding and keeping workers to fulfill these roles. Turnover in the field of personal care assistants is notoriously high. Limited data on the direct care workforce is undermining public knowledge among policy makers and long-term care providers to rectify the issue.
PHI's 2017 report goes on to say that while women have historically been the main labor pool for personal care workers and nursing assistants, the population of women aged between 25 and 64 is expected to expand by less than 1 percent in upcoming years, which could translate to 1.9 million fewer workers to choose from.
More disabled and elderly people can potentially suffer from not receiving care if the field does not manage to garner job candidates from more varying backgrounds. In addition, the onus (and financial expense) of personal care will increasingly fall on relatives, who will be forced to quit their jobs and spend their savings to look after a vulnerable loved one.
Strains from the COVID-19 pandemic are exacerbating these problems even further. Prospective personal care workers have another reason to be discouraged from taking on these roles because it is virtually impossible for them to socially distances themselves from their clients due to the nature of their work.
“I can live without doctors and nurses," Koller said. "But I have no life without those direct care workers or people to get me up and put me in my chair. Without them, I couldn’t do any of the stuff I enjoy.”
Koller, who has become an advocate for disability rights since having moved into the Beechwood Home, says it will be important to improve the working conditions and professional status of personal care attendants to reverse the shortage of these healthcare workers.
“We need to work on better training retention and also give these wonderful aides opportunities for growth, the chance to unionize and, as always, get benefits. And just make them valued,” Koller said.
Even though she misses living in the community and being around her loved ones and friends, Koller will continue to live in her assisted living facility for the indefinite future. She said she is waiting to take any further steps until she is confident she can find opportunities for accessible housing and caregivers she would ultimately want to hire. While the lack of an adequate workforce of personal care workers has largely been impacting marginalized people, Koller said the public needs to become more aware of the issue and take greater action. She observed the shortage of personal care attendants will eventually impact many more people.
“In some way or the other, the majority of us are going to face this issue," Koller said. "It might be when you get older or have an aging parent. I faced it young, but everyone’s going to get older and everyone’s going to need care.”
