Julie Witterts, recorded on Zoom, says she appreciates her fellow direct support professionals (DSPs) during the COVID-19 pandemic.

Julie Witterts, recorded on Zoom, says she appreciates her fellow direct support professionals (DSPs) during the COVID-19 pandemic.

About 8,500 direct support professionals (DSPs), and counting, have responded to a new survey  from ICI designed to measure the impact of the COVID-19 pandemic on the essential employees working with people with disabilities.

Conducted in partnership with the National Alliance for Direct Support Professionals, the online survey captures information about whether DSPs are officially classified as essential workers in their communities, how their work has changed as a result of the pandemic, whether there have been increases or decreases in work hours or layoffs, what types of personal protective equipment and safety training they have received, and what consequences of COVID-19 they have observed in the people they support.

“Hearing from workers themselves is key to changing policy, and this is an excellent time to ask them about their experiences,” said Amy Hewitt,  ICI director. “This overwhelming response creates possibly the largest-ever sample of the workforce supporting people with intellectual and developmental disabilities. Through social media and direct outreach to advocates, providers, individuals with disabilities and families who employ DSPs, we have given voice to a group of professionals that has traditionally been difficult to reach.”

Open-ended questions on DSP self-care and employer best practices also are part of the survey, as is wage and demographic data. Some respondents have expressed interest in telling their story about being a DSP during COVID-19 and are being interviewed and filmed about their experiences via Zoom (pictured). Selections from these interviews are being posted online  and shared across social media.

ICI is a longtime advocate for increasing pay, benefits, and professionalism in the DSP workforce. In a survey last year by National Core Indicators,  researchers found that DSPs earn about $12 per hour, the average annual turnover rate is 51%, and vacancy rates range from 8% to 17%, depending on how many hours the DSP is employed. Their duties typically include administering medications, coordination of multiple services, teaching and training, transportation, social and job skills coaching, counseling, personal and home care, and more.

In a recent MinnPost article  highlighting the severe shortage of DSPs, Hewitt called for greater recognition of the essential nature of the work, higher pay and benefits, and more personal protective equipment.

“As our country responds to the devastation of COVID-19, 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,” Hewitt wrote. “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.”

Since that article was published, in addition to the DSP survey, the disability advocacy community has mobilized other critical research in the absence of official government data. The Autistic Self Advocacy Network, for example, has created an online tool  showing more than 18,000 deaths and 90,000 COVID-19 cases in congregate care settings such as nursing homes and institutions for people with developmental disabilities.

And in a May 11 PBS NewsHour segment  featuring a wide range of people with disabilities sharing concerns including medical care rationing, Rebecca Cokley of the Center for American Progress says people with disabilities are simply no longer able to engage with society due to the loss of their support professionals.

“They are worried about the loss of services actually forcing them to be institutionalized or put in a nursing home against their will,” she told PBS. “Any time there’s any sort of health care rationing, it’s the sad truth of history that … we’re put to the end of the line.”