I’m worried about people with disabilities and their direct support workers as they navigate this pandemic. As someone who has spent decades fighting for the rights and inclusion of people with intellectual and developmental disabilities, I’m worried not only that people with disabilities will be disproportionately harmed by rationing of care, but also about the overworked, underpaid direct support professionals (DSPs) who address their daily needs. 

DSPs are on the frontline of the COVID-19 outbreak. They are essential workers who are risking their own health daily to provide critical support to people with disabilities. We hear about other health care professionals – nurses, doctors, nursing assistants – but direct support professionals remain largely invisible. 

DSPs’ work involves close personal contact, and shortages in protective gear and safety training is resulting in people with disabilities and their workers becoming ill with COVID-19. Shelter-in-place orders put many DSPs in situations where they must balance long hours and no child care. They are working double and triple shifts to ensure people with disabilities are safe and getting the supports they need. Yet, what are we doing for this workforce?

Vacancies and turnover rate were already high

Before this pandemic, DSP vacancy rates were already unmanageable and annual turnover exceeded 50 percent. High unemployment rates will likely provide an influx of new workers, but they will be unprepared; you cannot teach the skills required of a DSP in a few days or even a few months. Even if scores of recently unemployed workers flock to this field, they will disappear quickly as the economy recovers. Policymakers and service provider organizations that hire DSPs will experience a false sense of relief when vacancies are temporarily filled, but this will only stall advocacy efforts to strengthen supports for people with disabilities. 

DSP staffing was in crisis mode long before the pandemic. We pay DSPs less than workers with far fewer skills. These professionals not only provide personal care, but also coordinate health and social services, assist in building job and social skills, provide transportation, and so much more. For all of that, a study we released last summer found that DSPs in Minnesota earn an average of less than $12 an hour, about the same as the national rate. These wages and the turnover rate would be unacceptable in nearly every other industry, so why do we tolerate it for these essential workers, who routinely perform highly skilled tasks such as tube feeding and medication administration that most Licensed Practical Nurses are not allowed to do?

As our country responds to the virus’ devastation, those of us working for the full inclusion of people with disabilities in all aspects of society will fight any attempt to disregard their safety and rights. This includes sins of omission by ignoring people with disabilities in economic stimulus programs and blatant discrimination in care-rationing decisions. It includes demanding that this country finally recognizes the critical nature of DSP work. 

Boost overtime and hazard pay

We join our colleagues at the Association of University Centers on Disabilities, The Arc, the Autistic Self Advocacy Network, the American Network of Community Options and Resources, the National Disability Rights Network, the National Association of Councils on Developmental Disabilities and many others in calling for government payers to boost overtime and hazard pay for DSPs, as well as deliver more protective gear and training in dealing with COVID-19. States should create emergency child care subsidies for all essential workers, including DSPs. Individuals should thank DSPs and recognize them for their work.

There are no short-term fixes, and attempting to create them will leave us right back where we started. It’s time to permanently raise pay, benefits, and professional training for the people supporting individuals with disabilities. They are, indeed, essential.

Amy Hewitt, Ph.D., is the director of the Institute on Community Integration at the University of Minnesota.

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