Providing Support During the COVID-19 Pandemic

Introduction

In March of 2020, many businesses and schools followed safety protocols,  closed their doors, and began working and participating remotely. For the vast majority of direct support professionals (DSPs), this was not an option. As we learned from friends and colleagues across the country of the mounting challenges in providing supports safely to individuals with disabilities during the COVID-19 pandemic, we knew it was important to hear directly from DSPs about their experiences. In response to this need, the University of Minnesota's Institute on Community Integration quickly developed a 27-question survey and collaborated with the National Alliance for Direct Support Professionals to reach a large sample of DSPs from across the country. This survey, completed by direct support professionals, was intended to gather evidence about their experiences and lead to effective policy and practice decisions about what is needed and to better prepare for future waves of this pandemic.

Background 

The direct support workforce provides an array of critical supports making it possible for people with intellectual and developmental disabilities (IDD) to live, work, and thrive in their communities. These professionals perform multiple tasks, at any given time during the course of their work, which may be similar to those of teachers, nurses, psychologists, occupational therapists, physical therapists, counselors, dieticians, chauffeurs, personal trainers, and others. There is no Bureau of Labor Statistics occupational classification for direct support workers and they are often categorized with home health aides, personal care assistants, certified nurse assistants, and others. Providing home and community-based supports for people with IDD, however, requires specialized skills and competencies that are not reflected by the low wages due to underfunded Medicaid-reimbursed rates, limited access to benefits, and lack of respect afforded to this essential workforce.

The shortage of direct support workers is well documented. Over 50% left their positions in 2018 with one-third leaving in the first six months of employment and vacancy rates are near 15% for full-time and 18% for part-time positions (National Core Indicators, 2019). As a result, many direct support workers, supervisors, and other staff consistently have to work overtime to provide supports, yet sometimes people with IDD go without supports. Family members are called upon to provide these supports which affects their availability to maintain employment. With the pandemic, social distancing guidelines and stay-at-home orders have negatively affected the lives of people with IDD and the supports they need.

Almost 9,000 direct support workers from the U.S. completed the survey between April 23-May 27, 2020 with at least one survey received from every state. Nearly 60% of respondents were employed in the direct support workforce as their primary job for more than 36 months and 18% were employed less than one year. A little over 60% worked in agency/facility sites, 39% worked in individual or family homes, and 17% worked in day programs or employment services. While 96.8% self-identified as an essential worker, when the pandemic hit in the U.S., states were slow to identify direct support workers as essential.