A lack of employment benefits, including paid time off or health insurance benefits, makes the work less attractive and places workers and consumers’ health at risk.
DSWs often find their work rewarding and take pride in helping people, but as noted above, they cannot always afford to remain in this line of work. Additionally, they are experiencing burnout and struggle to take time off to recharge and take care of their own needs. As shared by an older DSW who has worked in this field for a long time and cared for three different consumers during the pandemic, “I’m getting ready to retire anyway. But still, I put in my time and I’m gonna walk away with nothing, really, just because I helped. …. I can’t emphasize this enough, who’s going to take care [of the] caregivers? So that’s why those sick days and vacation time, that’s really important. If you want your client to get top quality care, we need care too.” In addition to the fact that it’s difficult to afford unpaid leave, she feels she cannot take a vacation because her clients would go without care as there is no one to fill in during her absence.
DSWs are often dependent on public assistance and have high rates of being uninsured (Scales 2021). As shared by one homecare agency provider, “I think here at the office we often feel, yes, we’re serving our clients, but often times our DSPs (Direct Support Professionals) are also our clients, because they’re living on the edge too, a lot of them. All of them needed the same resources [such as] the food bank, or how [they can get] assistance paying bills, because they’re so close to the bone themselves that if any hiccup happened, and they lost a couple hours for that week for whatever reason, they were in the same boat as a lot of our clients.” It is worth noting that this provider pays more than the Medicaid HCBS reimbursement rates allow, by subsidizing worker wages with county funds and private donations. Yet even with these additional funds, their staff are living on the edge of poverty and the agency is turning away client referrals every month due to lack of staffing capacity.
COVID and COVID precautions have complicated the work and the working relationship, especially between self-directing consumers and their workers.
It is clear that community-based settings are safer than institutional settings, such as nursing facilities, during the COVID-19 pandemic; however, these direct support staffing challenges also place these consumers at risk. Many HCBS consumers are at increased risk of adverse outcomes if they caught COVID-19 due to age or pre-existing conditions, and many of their workers and caregivers also have risk factors. As noted by a consumer on the PD waiver program who has an immune disorder, catching COVID-19 would be a “death sentence.” As such, COVID-19 safety precautions were very important to HCBS providers and consumers. While many workers followed safety protocols and took great care to keep themselves and their clients safe, this was not always the case. Unfortunately, employers and self- directed consumers found it more difficult to require or enforce COVID-19 safety protocols when they feared that disgruntled workers would quit and they would not be able to find replacement workers. As shared by one caregiver to two adults on the IDD waiver, “I was afraid that they would not work if I made them [wear masks]… it’s very controversial in the community I work in, so I think my fear level is even higher.” A group home provider reported, “So we did have some issues with non-compliance on the job. We had to implement disciplinary action for individuals who [were] reported not wearing masks…. There’s always this, at what level is it more of a safety risk to terminate or be at risk of losing this staff for the individual served?” An FMS provider reported, “We have one (client) currently that is pretty insistent that their worker should be vaccinated. The worker doesn’t really want to get vaccinated, but