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. As such the University of Minnesota and National Alliance for Direct Support Professionals collaborated to lift up the voice of the direct support workforce. The aim of this study was to gather evidence about the experiences of the direct support workforce during the COVID-19 pandemic and to inform efforts to better prepare for future waves of this pandemic.
A direct support worker was defined as an employee who spends at least 50% of their time providing supports for a person with IDD. Almost 9,000 direct support workers from the U.S. completed the survey between April 23-May 27, 2020. At least one survey was received from every state. Nearly 60% of respondents were employed in the direct support work-force 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 program 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.
Comprehensive, organized and funded response plans at national and state levels for additional waves of COVID-19 and future pandemics. 66% of respondents indicated plans were in place to take employees’ temperatures on their shifts. Access to masks, gloves, and COVID-19 testing was limited. While direct support roles were seen as essential, there is not universal acknowledgement of this status across states and by the federal government. This workforce needs to be officially identified as essential and access to PPE needs to be assured to protect their health and safety. Establishing a standard occupation classification for direct support workers would aid these efforts.
Wage increases for essential workers commensurate with the increased level of exposure. Direct support depends largely on human interaction, placing workers at increased risk for contracting COVID-19. Only 24% of respondents indicated they were paid higher wages during the pandemic. Furthermore, resources are desperately needed to attract competent, qualified staff to fill vacancies and retain veteran skilled staff. 26% of respondents indicated they were even more short-staffed due to COVID-19 and many employees were working a high number of overtime hours.
Access to career ladders. Nearly 74% of respondents indicated they were primary wage earners in their household, earning an average of $13.63 per hour. While the long-term effects of the pandemic on the workforce and people with disabilities who receive their support is unknown, they responded with a sense of duty and professionalism and we need to find ways to keep them in these jobs. This workforce should have access to career ladders and credentialing programs that result in increased wages and access to benefits.
Increased training on health and safety. Nearly 27% of new hires during the COVID-19 pandemic were reportedly not getting typical orientation and preservice training. Two thirds of respondents indicated that health and safety training was offered after the start of the pandemic. Comprehensive safety training needs to be provided at the onset of a public health crisis.
Access to childcare and support if schools or daycares close. Nearly one quarter of respondents knew someone who left their direct support position due to childcare issues. Others left to care for family members. Ensuring essential worker status specific to this occupation would prioritize childcare avail-ability for these families in most states.
Professional recognition of direct support. Direct support workers have always provided critical, essential supports, while their wages reflect entry-level work. The average wage of $13.63 per hour prior to the pandemic is not reflective of the skilled nature of the work.
National Core Indicators. (2018). National Core Indicators 2018 Staff Stability Survey Report. Retrieved from https://www. nationalcoreindicators.org/upload/core-indicators/2018Staff-StabilitySurveyReport.pdf
Funded by grant #90RTCP0003 from the National Institute on Disability Independent Living Rehabilitation Research and cooperative agreement #90DDUC0070 from the Administration on Community Living, U.S. Department of Health and Human Services.
Please contact Jerry Smith with questions. The full report will be available in August 2020.