Providing Support During the COVID-19 Pandemic

Rehabilitation Research Training Center on Community Living and Participation for Persons with Intellectual and Developmental Disabilities

Institute on Community Integration, University of Minnesota, November 2023

In collaboration with:

This survey was conducted by the Institute on Community Integration at the University of Minnesota in partnership with the National Alliance for Direct Support Professionals.

The development of reports and manuscripts was supported by grant #90RTCP0003 to the Rehabilitation Research and Training Center for Community Living for Persons with Intellectual and Developmental Disabilities from the National Institute on Disability Independent Living and Rehabilitation Research and grant # 90DDUC0070 to the Institute on Community Integration from the Administration on Community Living (ACL), U.S. Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not therefore necessarily represent official NIDILRR or ACL policy.

Report layout and design by Sarah Curtner and Shawn Lawler.

Suggested Citation:

• Pettingell, S., Bershadsky, J., & Hewitt, A. (2023). Direct Support Workforce and COVID-19: What Happened Over 24 Months? Minneapolis: Institute on Community Integration, University of Minnesota.

Introduction

March 2020 is a timepoint seared in minds across the United States. The onset of the COVID-19 pandemic forced businesses, schools, and organizations supporting persons with disabilities to develop and implement safety protocols, shut their doors, and/or work in very different ways including moving to remote methods or very different staffing and service models to ensure safety of workers and those supported. For most direct support professionals (DSPs) and frontline supervisors (FLSs), there was no option to stop working. The people with intellectual and developmental disabilities (IDD) to whom they provided supports still needed them. As such, nearly all persisted with their work in different places, situations, and in some cases with different people. From the beginning of the COVID-19 pandemic, when stories of significant challenges in providing supports safely to individuals with IDD were told by colleagues and friends, the University of Minnesota's Institute on Community Integration (ICI) and the National Alliance for Direct Support Professionals (NADSP) recognized the need to hear the voices of DSPs and FLSs about their experiences in supporting people with disabilities during a global pandemic. In response, ICI developed a series of four online surveys and collaborated with NADSP to hear directly from DSPs and FLSs across the country throughout the pandemic. The survey series was intended to gather information about DSP and FLS experiences to inform effective policy and practice decisions about what is needed and to better prepare for potential future waves of this or other pandemics. This report is a summary of data gathered at four timepoints from April 2020 through July 2022.

Background

DSPs and FLSs deliver crucial services and supports to people with intellectual and developmental disabilities (IDD) so they can live, work, socialize, and prosper in their communities. DSPs provide various supports that meet individual needs related to daily living, health, household tasks, social connections, work, and other aspects of community living (Bogenschutz et al., 2014). While their primary role is guiding and directing the work of DSPs, FLSs often provide a significant amount of direct support to persons with IDD, too. Official Bureau of Labor Statistics occupational codes do not currently exist for direct support professionals or frontline supervisors. DSPs are likely categorized under the occupational codes for personal care assistants, home health aides, and certified nursing assistants (U.S. Bureau of Labor Statistics, 2021). While DSPs do execute similar functions to these other occupational groups; there are many additional responsibilities not included in these other classifications. While not often considered in DSP compensation and training, high level skills are imperative for supporting people with IDD in the community. DSP wages have been consistently low for decades. Most DSPs work overtime hours or have multiple jobs to support their families and pay the bills. Because of limited access to affordable benefits, nearly half (45%) are dependent on public assistance of some kind (PHI, 2021). Throughout the United States, this workforce is largely unfamiliar and not given the visibility, respect, and value it deserves.

Documentation of the shortage of direct support workers has existed for nearly three decades. DSP vacancy rates were 12.3% for full-time and 16.4% for part-time positions. Nearly half (43.6%) of DSPs left their positions in 2021 with just over one-third (35.1%) having left in the first six months of employment (National Core Indicators, NCI, 2022a). High vacancy rates have consequences that include DSPs, FLSs, and other staff having to regularly work overtime to provide supports (Hewitt et al., 2019; Test et al., 2003) and persons with IDD foregoing authorized supports that are needed. This impacts family members as they are the ones left to provide these supports which, in turn, affects their ability to meet their own employment and life demands (Anderson et al., 2002). These challenging circumstances were exacerbated by the COVID-19 pandemic. Throughout the pandemic, the danger of developing COVID-19 prompted social distance guidelines, stay-at-home orders, and other safeguards impacting DSPs, FLSs, and the persons to whom they delivered supports. People with IDD are more likely to be diagnosed with (Gleason et al., 2021) and die from COVID-19 than those without IDD (Davis et al., 2021; Gleason et al., 2021). During the pandemic, people with IDD have experienced loss of employment and social isolation (Hewitt et al., 2020; Hewitt, Pettingell, Kramme, et al., 2021; Hewitt, Pettingell, Berskadsky, et al., 2021; National Core Indicators, NCI, 2022b; Pettingell et al., 2022). During the duration of the pandemic, DSPs have typically been their primary supports.

In December 2020, the first vaccine for COVID-19 was made available in the United States (National Public Radio, NPR, 2021). This has remained the country’s primary strategy for battling this pandemic. Across most states, caregivers were early approved recipients of vaccinations due to the nature of their proximal work tasks and because the individuals with IDD whom they support were at an elevated risk of contracting and dying of COVID-19 (Davis et al., 2021; Gleason et al., 2021). As of November 2022, 69% of the United States population was fully vaccinated (Centers for Disease Control, CDC, 2022).

The purpose of the COVID-19 DSP Workforce Survey series was to gather information about the experiences of DSPs and FLSs related to the COVID-19 pandemic to inform efforts to prepare for future waves of this and other pandemics. There were many unknowns about how to support DSPs, FLSs and people with IDD when the first round of data collection took place in the early months of the pandemic. By the time of the fourth round of data collection, life appeared to be returning to pre-pandemic routines and mask mandates and social distancing rules were relaxed in many places. All four surveys examined how workforce systems supported DSPs and FLSs from the start of the pandemic through two and a half years after. All survey results are available at www.ici.umn.edu/covid19-survey.

The purpose of the COVID-19 DSP Workforce Survey series was to gather information about the experiences of DSPs and FLSs related to the COVID-19 pandemic to inform efforts to prepare for future waves of this and other pandemics.

Method

All four surveys were administered using the online survey platform Qualtrics. Information on the surveys and how to access the links was posted on ICI’s website, circulated on social media, and sent to many of our partners (e.g., The National Alliance for Direct Support Professionals, ANCOR, The Arc, NASDDDS, etc.) who promoted the survey and distributed the link to DSPs and disability organizations across the country.

The initial survey was launched on April 23, 2020, and closed on May 27, 2020. The 6-month follow-up survey was in the field from November 23, 2020, to January 19, 2021. Data collection for the 12-month follow-up survey was conducted between June 1, 2021, and July 25, 2021. The final 24-month follow-up survey was fielded from June 1, 2022, to July 22, 2022. The resulting workforce samples included 8,914 in the initial survey, 8,846 in the 6-month survey, 5,356 in the 12-month survey, and 2,657 in the 24-month survey. The overlap of respondents across the surveys was minimal. Of the 6-month sample, 26% indicated they had also taken the initial survey in 2020. At the 12-month survey, 13% of respondents stated they had taken one of the previous surveys. At the 24-month survey, 14% reported taking a previous survey, and 32% could not remember if they had taken it in the past. All samples were national. The initial and 6-month surveys had respondents from all 50 states and the District of Columbia. There were respondents from all but three states in both 12- and 24-month surveys, along with the District of Columbia in the 24-month survey.

This report summarizes information from the four different samples at four different points in time during the COVID-19 pandemic. Descriptive statistics were provided using SPSS version 27 (IBM Corporation, 2020) for each of the surveys.

There were 8,914 respondents in the initial sample, 8,846 at 6-months, 5,356 at 12-months, and 2,657 at 24-months.

Results – Demographic & Employment Characteristics

Gender, age, race, ethnicity, immigration status

Respondents provided information about their gender identity, age, race, ethnicity, and immigration status (see Table 1). Across surveys, 82-83% consistently identified as women (including transgender women), 15-16% men (including transgender men), and 2% as non-binary or preferring to self-describe. The average age was 45-47 years. Respondents reported their race as:

• 72-76% White,
• 13-19% Black or African American,
• 2% American Indian or Native American,
• 1-2% Asian,
• 4-5% two or more races, and
• 2% another race not listed.

Six to seven percent of respondents indicated their ethnicity as Hispanic, Latino, or Spanish heritage, and 8-10% were first- or second-generation immigrants to the U.S.

The demographic composition of the 24-month follow-up survey had slightly fewer people of color than the 6- and 12- month follow-up surveys. Demographic information was not collected in the initial survey. It should be noted that the demographics reflected in this study of DSPs supporting people with IDD are not consistent with other studies in the IDD sector, where 48.8% of the workforce is identified as people of color (NCI, 2022a).

Education

Most respondents (70%-73%) had education beyond high school. 15%-17% had a two-year degree, 27%-31% had some college, 18%-20% had a four-year bachelor’s degree, and 8% had a graduate degree. Another 25%-29% had a high school diploma, 1% completed 12th grade but had no diploma, and <1% had an 11th grade education or less.

Job Titles and Tenure

A direct support professional (DSP) was defined as an employee who spends at least 50% of their time providing direct support (support, training, personal assistance, community integration) for a person with intellectual or developmental disabilities. DSPs may perform some supervisory tasks, but the primary focus of their job is direct support. They have titles such as direct care worker, house managers with primarily direct care duties, residential aide, job coach, home health aide, personal care assistant, certified nursing assistant, and many others. A frontline supervisor (FLS) was defined as an employee whose primary responsibility (more than 50% of their role) is the supervision of DSPs. While an FLS may perform direct support tasks, their primary job duty is to supervise employees and manage programs; they are not viewed by the organization as DSPs and their titles may include house managers if their duties are not primarily direct support. An FLS may or may not be in a licensed or degreed position (such as a nurse), but the organization views their role as guiding and directing the work of the direct support professional more than 50% of their time. The job titles of the respondents across surveys included:

• 76-81% Direct Support Professionals,
• 16-22% Frontline Supervisors,
• 1-3% Other, including Certified Nursing Assistant, Behavior Case Manager, Early Interventionist, Educator, Medical Liaison, LPN, Nurse, PCT, Physical Therapist, Positive Support Analyst, and Psychologist.

Over three-quarters of respondents in the surveys were DSPs and nearly one-quarter FLSs. A small number of respondents were CNAs or other positions providing direct support to people with IDD.

In general, the respondents had relatively long tenure with their primary employer, with the majority working for their primary employer for more than 36 months: 59% at the initial survey, 62% at 6-months, 66% at 12-months, and 85% at 24-months (see Table 1). It should be noted that this sample was of DSPs and FLSs who had been in their positions for longer periods of time and as such were more experienced.

Settings Where Supports Were Provided

Survey respondents reported the primary setting where they provided supports. The pattern was consistent across surveys. The majority of respondents’ (57%-65%) primary service setting was an agency or facility, 25%-39% worked in family or individual’s homes, 8% to 17% worked in community employment or job sites, and 2%-5% were in other settings. Other settings included community non-employment (e.g., fun, volunteer, recreation, etc.), hospital, remote/telehealth/virtual, and school (high school, college, pre-K, elementary school). Nearly half of the respondents (44%-46%) provided services in more than one setting.

Wages Paid and Primary Wage Earner Status

Nearly three quarters of respondents in each survey indicated they were the primary wage earner in their household (70%-74%). Respondents were asked to report their hourly wage rate as it was on January 1, 2020 (pre-pandemic). The purpose of this was to distinguish the base rate paid to DSPs and FLSs without salary augmentations added for essential workers by some states and/or employers due to the COVID-19 pandemic.

For DSP positions, the average reported pre-pandemic hourly wage was $13.63 (median = $13.10, range $7.25 to $30.00) in the initial survey, $13.92 (median = $13.46, range $6.25 to $40.00) in the 6-month survey, $14.18 (median = $13.73, range $6.78 to $40.00) in the 12-month survey, and $15.31 (median = $15.00, range $6.55 to $40.00) in the 24-month survey. FLSs made, on average, $17.83 for an hourly wage (median = $17.00, range $8.00 to $62.50) in the initial survey, $18.25 per hour (median = $17.61, range $8.00 to $60.00) in the 6-month survey, $18.10 per hour (median = $17.25, range $7.25 to $65.00) in the 12-month survey, and $19.85 per hour (median = $19.00, range $8.00 to $60.00). It is likely that the increase in reported pre-pandemic wage is at least in part due to difficulty remembering that far back, and/or misunderstanding the question and reporting current wages instead.

In the 12- and 24-month surveys, respondents were also asked to report their current hourly wage rate. For DSP positions, the average hourly wage was $14.60 (median = $14.18, range $6.25 to $40.00) in the 12-month survey and $16.58 (median = $16.00, range $6.43 to $40.00) in the 24-month survey. FLSs made, on average, $18.86 per hour (median = $18.00, range $8.25 to $65.00) in the 12-month survey and $21.80 per hour (median = $21.00, range $10.44 to $60.00). Table 2 details wage and primary wage earner information for DSPs.

Salary Augmentation for Essential Workers

Nearly all (96%-97%) of respondents self-identified as essential workers. In most industries, one benefit of “essential worker” status during the COVID-19 pandemic was access to essential worker salary augmentation. In community supports for persons with IDD, roughly one-third of respondents in the first three surveys reported that they received a salary augmentation due to the COVID-19 pandemic. By the 24-month survey, that was up to half of respondents (53%). For those who indicated that they received a salary augmentation, the amount of the wage increase is depicted in Figure 1. Lump sum bonus was not a response option in the initial survey.

• $0.01 - $1.00 per hour
• • 19% baseline
  • 11% 6M
  • 16% 12M
  • 23% 24M
• $1.01 - $2.00 per hour
• • 45% baseline
  • 48% 6M
  • 27% 12M
  • 24% 24M
• $2.01 - $3.00 per hour
• • 15% baseline
  • 14% 6M
  • 24% 12M
  • 16% 24M
• More than $3.01 per hour
• • 21% baseline
  • 6% 6M
  • 9% 12M
  • 11% 24M
• I received a lump sum
• • 21% 6M
  • 24% 12M
  • 26% 24M

Schedule Changes

Additional Work Hours Due to COVID-19

When asked about work hours, a third (34%-38%) of respondents reported working more than 40 hours per week prior to the COVID-19 pandemic in January 2020. One-quarter (26%) to one-third (35%) of respondents worked 1 to 15 additional hours per week due to the COVID-19 pandemic, 10%-16% an additional 16 to 30 hours per week, and 15%-24% worked 31+ additional hours per week due to the pandemic (see Figure 2).

• None
  • 46% baseline
  • 36% 6M
  • 38% 12M
  • 33% 24M
• 1 to 15 hours
  • 29% baseline
  • 33% 6M
  • 26% 12M
  • 35% 24M
• 16 to 30 hours
  • 10% baseline
  • 14% 6M
  • 12% 12M
  • 16% 24M
• 31+ hours
  • 15% baseline
  • 17% 6M
  • 24% 12M
  • 16% 24M

Changes in Work Schedules

All surveys asked respondents to report how their work schedules had been affected by the pandemic. Table 3 shows percentages reporting different types of changes in their work schedules due to COVID-19.

Most of the 24-month survey percentages of these effects are higher than those in the initial, 6-month, and 12-month surveys. Initially, 34% worked more hours per week, 30% worked different shifts, 29% worked in different settings, 2% worked remotely/telehealth/virtually, 18% worked less hours per week, 2% were furloughed/laid off/unemployed/facility closed, and 2% reported other changes. In the 6-month follow-up survey, 43% had additional responsibilities/different roles, 44% worked more hours per week, 35% worked different shifts, 28% in different settings, 12% worked remotely/telehealth/virtually, 12% worked less hours per week, and 6% were furloughed/laid off/unemployed/facility closed. In the 12-month survey, 40% had additional responsibilities/different roles, 30% worked more hours per week, 26% worked different shifts, 20% worked in different settings, 18% provided supports to different people, 9% worked remotely/telehealth/virtually, 5% worked less hours per week, and 3% were furloughed/laid off/unemployed/facility closed. At 24 months, 68% had additional responsibilities, 60% were working more hours per week, 45% were working different shifts, 40% were working in different settings, 37% were providing supports to different people, 12% were working remotely/telehealth/virtually, 6% were working less hours weekly, 4% were furloughed/laid off/unemployed/facility closed, and 8% reported other changes.

Impact of Pandemic on Staffing Patterns and Practices

Pandemic Impact on Turnover and Vacancy

Respondents were asked the reason(s) they or their coworkers were not currently working. In the initial survey, 34% feared becoming infected, 25% had childcare issues, 13% feared infecting others, and 9% had tested positive for COVID-19. In the 6-month survey, nearly one-fifth listed fear of becoming infected, childcare issues, quarantine due to COVID-19 exposure, and family reasons (17%-20%) for their coworkers not working. Thirteen percent had tested positive for COVID-19, and 7% feared infecting others. The 12-month survey was similar with 18%-21% reporting family reasons, childcare issues, and fear of becoming infected. Twelve percent reported quarantine due to COVID-19 exposure and testing positive for COVID-19, respectively, and 7% feared infecting others. In the 24-month survey, with the exception of testing positive for COVID-19 (20%), these percentages were lower than previous surveys. Fourteen percent reported quarantine due to COVID-19 exposure, 11% family reasons and childcare issues, 9% fear of becoming infected with COVID-19, and 5% fear of infecting others (see Table 4).

Personal Protective Equipment and Safety Measures

Provision of Personal Protective Equipment

Personal protective equipment (PPE) was in short supply at the onset of the pandemic. In the initial survey, 84% of respondents said their employer provided gloves, 54% received homemade face masks, 48% received medical grade face masks or face shields, 10% received home repair style face masks. Sixteen percent said other personal protective equipment was provided by their employer. In the 6-month survey, nearly 80% of participants said their employer provided gloves, 63% received paper/disposable face masks, 43% received face shields, 36% received medical grade face masks (N95), 36% received fabric face masks (purchased, not homemade), 34% received gowns, 27% received homemade face masks, 22% received goggles or safety eyewear, 11% received shoe covers, and 2% received neck gaiters. Three percent said other types of personal protective equipment was provided by their employer, while 5% said their employer did not provide PPE. A year and a half after the start of the pandemic (12-month survey), 90% of respondents said they have enough PPE; however, 20% said they had to pay for their PPE out of pocket. In the 24-month survey, the percentage of those paying out of pocket for their PPE was 15%.

Safety Measures in Response to COVID-19

Respondents reported on the types of safety measures put into place by their employers (see Table 5). The number of response options increased over the course of the four surveys as new safety measures were implemented.

In the initial survey, 67% of staff were provided training on health and safety, 66% had their temperatures taken before their shifts, 59% reported enforced social distancing, and 10% had access to COVID-19 testing. In the 6-month survey, 65% were provided training on health and safety, 72% reported taking staff temperatures before their shifts, 69% reported taking temperatures of people supported, 53% reported enforcing social distancing, 69% reported restrictions on visitors, and 36% reported being provided access to COVID-19 testing. In the 12-month follow-up survey, 79% reported additional cleaning required, 75% reported taking staff temperatures before their shifts, 71% were provided training on health and safety, 71% reported taking temperatures of people supported, 66% reported enforcing social distancing, 58% reported restrictions on visitors, 43% reported being provided access to COVID-19 testing, 21% reported requiring people supported to have COVID-19 vaccination, 14% reported requiring staff to have COVID-19 vaccination, and 6% reported requiring visitors to have COVID-19 vaccination.

In the 24-month follow-up survey, 69% reported additional cleaning required, 59% reported taking staff temperatures before their shifts, 69% were provided training on health and safety, 54% reported taking temperatures of people supported, 45% reported enforcing social distancing, 29% reported restrictions on visitors, 55% reported being provided access to COVID-19 testing, 29% reported requiring people supported to have COVID-19 vaccination, 37% reported requiring staff to have COVID-19 vaccination, and 8% reported requiring visitors to have COVID-19 vaccination, 63% reported taking visitors’ temperatures, 75% requiring staff to quarantine if tested positive for COVID-19, 51% requiring staff to quarantine if exposed to COVID-19, and 65% reported requiring staff to wear masks or other PPE.

COVID-19 Diagnosis

At the time of the initial survey, respondents were not asked about exposure to or diagnosis of COVID-19. At the 6-month survey, nearly half (47%) said they had been exposed to COVID-19 through their work. By the 12-month survey, over half (57%) had been exposed. Additionally, as seen in Figure 3, 19% indicated a positive COVID-19 diagnosis, 73% had never tested positive, and 8% had no official diagnosis but suspected they had it. By the 24-month survey, half (52%) of respondents reported a positive COVID-19 diagnosis, 42% had never tested positive, and 6% had no official diagnosis but suspected they had it.

• Yes
• • 19% 12M
  • 52% 24M
• No
• • 73% 12M
  • 42% 24M
• Not diagnosed but suspect yes
• • 8% 12M
  • 6% 24M

At the time of the initial survey, 91% of respondents had not supported anyone with a positive COVID-19 diagnosis. This dropped to 44% and 17% in the 12- and 24-month surveys, respectively. By the 24-month survey, 21% had supported 1-2 people diagnosed with COVID-19, 24% had supported 3-5 people, 16% had supported 6-10 people, and 22% had supported 11 or more people (see Table 6).

Vaccinations

As the time came for the 12-month survey, vaccinations were available. Respondents were asked if they had been vaccinated against COVID-19. At the 12-month survey, 69% reported they were fully vaccinated (2 shots of Moderna or Pfizer or 1 shot of Johnson & Johnson), 3% were partially vaccinated (1 shot of Moderna or Pfizer), 2% were not yet vaccinated but had an appointment scheduled, and 26% said they were not vaccinated (see Figure 4). By the 24-month survey, 84% indicated they were vaccinated, and 16% said they were not vaccinated. In addition, 67% of those who were vaccinated had also gotten their booster shot.

• No
• • 26% 12M
  • 16% 24M
• No, but had an appointment
• • 2% 12M
• Yes, partially
• • 3% 12M
• Yes, fully
• • 69% 12M
  • 84% 24M

Vaccination hesitancy

Twenty six percent and 16% of respondents reported not being vaccinated in the 12- and 24-month surveys, respectively. Reasons given by the unvaccinated for their choice not to be vaccinated are included in Table 7. Additional common themes for other reasons included: allergies, had COVID-19/has antibodies, pregnant/breastfeeding/fertility issues, strongly opposed to vaccinations in general, simply do not want to get it, not enough research/need more research, conspiracy theories/politics, and other health issues. Response options of doctor recommendation not to get the vaccine due to pre-existing conditions and vaccination being against beliefs/spiritual beliefs were not offered in the 12-month survey.

All respondents (whether vaccinated or not) were also asked separately about reasons any of their coworkers were hesitant to get vaccinated. Reasons listed for coworkers being hesitant to get vaccinated are included in Table 8. Additional common themes from other reasons included: not enough research/need more research, vaccinated people still get COVID-19, pregnant/breastfeeding/fertility issues, and conspiracy theories/politics. And, in the 24-month survey, some respondents reported that while some coworkers were still hesitant, the vaccine was mandatory, so they had to get it.

In the 12-month survey, 93% of respondents worked for employers that did not require them or their coworkers to be vaccinated in order to work for their organization, 76% worked for employers who did not offer paid time off (PTO) to get vaccinated, and 76% were in a state or worked for an employer where there was no financial incentive to get vaccinated. These numbers all dropped in the 24-month survey where 65% percent of respondents worked for employers that did not require them or their coworkers to be vaccinated in order to work for their organization, half (51%) of respondents worked for employers who did not offer paid time off (PTO) to get vaccinated, and 61% were in a state or worked for an employer where there was no financial incentive to get vaccinated.

Vaccination of People Supported

Respondents were asked how many of the people they support with IDD were vaccinated. In the 12-month survey, 5% said none, 6% fewer than half, 37% more than half, and 52% said all of the people they support were vaccinated. These numbers were comparable in the 24-month survey where 3% said none, 3% said fewer than half, 37% said more than half, and 57% said all of the people they support were vaccinated.

Impact of COVID-19 on People Supported

Respondents were asked about the consequences the people they supported were experiencing due to the social isolation from the COVID-19 pandemic. The experiences of social isolation are summarized in Table 9. They are consistent across the survey time points.

In the initial survey, 80% reported boredom, 57% increased mood swings and/or depression, 52% increased behavior issues, 48% loneliness, 47% more sleep than usual, 15% dietary issues, and 5% difficulty addressing pain management issues. In the 6-month survey, 79% said missed going out into the community, 71% said boredom, 56% said decreased exercise, 52% said more anxiety, 51% said increased mood swings and/or depression, 48% said increased behavior issues, 46% said loneliness, 40% said sleeping more than usual, 25% said regression, 14% said difficulty addressing dietary issues, 11% said other health issues, 10% said sleeping less than usual, 6% said difficulty addressing pain management, and 6% said academic concerns. In the 12-month survey, 73% said missed going out into the community, 68% said boredom, 54% said decreased exercise, 49% said more anxiety, 49% said increased mood swings and/or depression, 48% said increased behavior issues, 43% said loneliness, 40% said sleeping more than usual, 28% said regression, 17% said difficulty addressing dietary issues, 12% said other health issues, 9% said sleeping less than usual, 7% said difficulty addressing pain management, and 7% said academic concerns. In the 24-month survey, 73% said missed going out into the community, 68% said boredom, 53% said decreased exercise, 56% said more anxiety, 56% said increased mood swings and/or depression, 54% said increased behavior issues, 46% said loneliness, 43% said sleeping more than usual, 33% said regression, 14% said difficulty addressing dietary issues, 14% said other health issues, 10% said sleeping less than usual, 7% said difficulty addressing pain management, and 7% said academic concerns.

Impact of COVID-19 on Respondents

Work Life

Respondents were asked how they were feeling about their work life. As shown in Figure 5, at the 6-month survey, 2% of respondents indicated their work life was much better, 6% said better, 38% said the same, 40% said worse, and 14% said much worse. At the 12-month survey 6% indicated their work life was much better, 10% said better, 40% said the same, 26% said worse, and 9% said much worse. Two and a half years after the start of the pandemic (24-month survey), 5% indicated their work life was much better, 15% said better, 33% said the same, 36% said worse, and 11% said much worse. This question was not included in the initial survey.

• Much better
• • 2% 6M
  • 6% 12M
  • 5% 24M
• Better
• • 6% 6M
  • 10% 12M
  • 15% 24M
• The same
• • 38% 6M
  • 40% 12M
  • 33% 24M
• Worse
• • 40% 6M
  • 26% 12M
  • 36% 24M
• Much worse
• • 14% 6M
  • 9% 12M
  • 11% 24M

Health and Wellness Experiences

Respondents were asked about their health and wellness and if they had experienced specific issues due to the pandemic. Health and wellness related issues are reported in Table 10.

In the 12-month survey 50% reported physical and/or emotional burnout, 47% anxiety, 38% sleep difficulties, 36% depression, 18% physical health complications, 4% suicidal ideation, and 4% listed other issues. Eighteen percent of respondents did not report any of these experiences. In the 24-month survey, with the exception of suicidal ideation and other issues, these numbers were higher. Over half (56%) reported anxiety, 55% physical and/or emotional burnout, 43% sleep difficulties, 40% depression, 25% loss of a loved one, 21% physical health complications, 10% other mental health issues, 9% Post Traumatic Stress Disorder (PTSD), 4% suicidal ideation, and 4% listed other issues. Sixteen percent of respondents did not report any of these experiences. Themes that emerged in other issues included: anger/frustration/irritation, family issues, fear, financial stress, got COVID-19, isolation/loneliness, less active, loss of a client, relationship issues, restricted life out of work, stress, tired/fatigue, weight gain, and worry/heartbreak. Response options of loss of a loved one, PTSD, and other mental health issues were not asked at 12-months.

Key Reflections on COVID-19: What Have We Learned About the Workforce?

Throughout the pandemic, respondents provided critical supports for people with IDD. The following sections summarize findings across the first 2.5 years of the COVID-19 pandemic.

Respondent Demographics

Samples were consistent across all four waves of data collection (Table 1). The average age ranged from 45 to 47 years, and 82-83% identified as women (including transgender women). Nearly three-quarters (72%-76%) of respondents identified as White with 13%-19% identifying as Black or African American and 9%-11% a combination of American Indian or Native American, Asian, another race not listed, and two or more races. Additionally, 6%-7% indicated they had a Hispanic, Latino, or Spanish heritage with 8%-10% first- or second-generation immigrants to the United States. These demographics depict a slightly older sample compared to the average of 41 years and 86% female reported in a national sample of home care workers across service sectors (PHI, 2021) and do not adequately reflect the diversity of the direct support workforce in other studies that included the IDD sector where nearly half (48.8%) identified as people of color (NCI, 2022a).

Respondent Tenure

For all four surveys, a large majority reported they had worked in direct support at their primary employer for 36 or more months (Baseline - 59%; 6M - 62%; 12M - 66%, 24M - 85%; Table 1). These numbers are high compared to agencies participating in the 2020 National Core Indicators Staff Stability Survey reporting that just over one-third (39.0%) of their DSPs had been employed for 36+ months (NCI, 2022a). Longer tenured respondents provide a valuable perspective related to their expertise in the field and their commitment to direct support.

Wages

Across the surveys, the average DSP pre-pandemic hourly wage ranged from $13.63 in the initial survey to $15.31 at 24-months. FLSs made, on average, $17.83 to $19.85 per hour. FLSs made, on average, $17.83 per hour at in the first survey and $19.85 in the last survey. Only the 12- and 24-month surveys asked respondents to report their current hourly wage rate. For DSP positions, the average hourly wage ranged from $14.60 in the initial survey to $16.58 at 24-months. FLSs made, on average, $18.86 per hour at 12-months and $21.80 at 24-months (Table 2). This sample of survey respondents had a much longer tenure than typical DSPs and FLSs, indicating that they are not entry-level workers, which may help to explain higher hourly rates than in other studies (NCI, 2022a). Regardless, a family of three cannot live and meet expenses on this wage, and nearly three-quarters of respondents (79%-74%) indicated they were the primary wage earner in their household.

Working Many Hours Per Week

At the onset of the pandemic, 34%-38% of respondents reported working 40 or more hours per week. On top of that, half (54% in the initial survey) to two-thirds (62%-67%) of respondents worked additional hours per week due to COVID-19. Between 15%-24% were working an additional 31 or more hours on top of their regular work hours (Figure 2). Additionally, 40%-68% reported additional responsibilities or different roles with 18%-37% providing supports to different people (Table 3). The need to work overtime or additional jobs within the direct support workforce is nothing new and has been documented for decades (Hewitt et al., 2019; Test et al., 2003). Expecting workforce modify their work life and hours, add new roles and responsibilities, and continually work additional hours does not encourage good health and wellness and exacerbates burnout and furthers the retention issues that are already a challenge within this workforce. Solutions are needed at the systems-level. They need to incorporate career preparation and advancement programs, offer competitive wages in alignment with the required skills of the position, and create workplace atmospheres that address staff burnout, stress, depression, anxiety, and burnout.

Staffing Challenges

Staffing challenges were identified a consistent problem in all four surveys. Respondents reported coworkers were currently not working due testing positive for COVID-19 (9%-20%), quarantine due to COVID-19 exposure (17%-14%), family reasons (11%-21%), childcare issues (11%-25%), fear of becoming infected (9%-34%), and fear of infecting others (5%-13%) (Table 4). Strategies and programs that promote recruitment and retention must be developed and implemented to address the persistent challenges of high turnover and vacancies. COVID-19 took an already serious problem and made it more dismal. An encouraging sign from the 24-month survey was 72% of respondents indicating new staff had been hired at the sites where they worked in the past six months.

Safety Measures and PPE

Nearly all (95%-98%) respondents reported some level of safety measures established by their employers in all four surveys. New safety measures were developed as the pandemic persisted. As time passed, there was greater adherence to safety measures due in part to guidelines established by states and the Centers for Disease Control and Prevention (2021). Over 50% of respondents experienced the safety measures available at each time point. Exceptions included access to testing and vaccinations which were made available to respondents and the general public at different times throughout the pandemic. Percentages for both of these safety measures grew over time as they were available to more people (Table 5).

Personal protective equipment (PPE) was in short supply at the onset of the pandemic. What items were considered necessary and effective PPE were being explored, and practices related to providing and using PPE were fluid. In the initial survey, respondents were only asked to report on the provision of gloves and types of facemasks provided. Eighty-four percent of respondents said their employer provided gloves, 54% received homemade face masks, 48% received medical grade face masks or face shields, and 10% received home repair style face masks. As the pandemic worsened, PPE came to include many more items like gowns, goggles/safety eyewear, and shoe covers. While there were PPE shortages when the pandemic started, in the 12- and 24-month survey 90%-91% reported having enough PPE. The negative was that 15%-20% had to pay for it out of pocket.

Diagnosis of COVID-19

As expected, the number of respondents who supported people diagnosed with COVID-19 increased at each survey point. In the initial survey, 91% had not supported anyone diagnosed with COVID-19 compared to 17% in the 24-month survey. In the 6-, 12-, and 24-month surveys, respondents supporting only 1-2 people with COVID-19 ranged from 18%-22%, 3-5 people 12%-24%, 6-10 people 6%-15%, and 11 or more people 5%-22% (Table 6). Respondents took significant risks in their jobs of supporting people with IDD. People with IDD are at great risk of contracting and dying from COVID-19 compared to others in the general population (Gleason et al., 2021). This demonstrates the need for people who provide support to be identified and paid as essential workers during emergency situations like pandemics.

Vaccination

Sixteen percent of the 24-month follow-up survey respondents were not vaccinated, which is a drop from 26% in the 12-month follow-up survey. Vaccine hesitancy is still pervasive in the United States. As of November 2022, 31% of the population was not fully vaccinated (CDC, 2022).

There were several reported reasons for not getting vaccinated, including concern about side effects, belief systems against vaccination, fear it is unsafe, doctor recommendation not to get due to pre-existing conditions, and others. Of respondents who were vaccinated, 42% waited at least three months after becoming eligible before doing so. Motivations to get vaccinated included protecting family or people they support, protecting themselves, employer mandate, knowing others who had previously been sick with COVID-19, and others.

Continued efforts to ensure that DSPs are vaccinated is important in reducing the spread of COVID-19 within the long-term services and supports programs in which they work; currently, 16% of DSPs report being unvaccinated.

Work Life Is Still Difficult

Work life has been challenging throughout the pandemic. At the 6-month survey, 8% said their work life was better or much better since the beginning of COVID-19. This number was higher at 12-months (16%) and 24-months (20%). At 6-months, 54% reported work life was worse or much worse with an improvement at 12-months (35%) followed by an increase to 47% at 24-months. At 12- and 24-month surveys, respondents indicated experiencing health and wellness issues as a result of the pandemic. These issues included sleep issues, physical health complications, physical and/or emotional burnout, depression, anxiety, other mental health issues, PTSD, suicidal ideation, loss of a loved one, and others. It is necessary to acknowledge these stressors and consider their impact on the workforce. As recommended for direct support workers in other sectors, access to support and counseling would be beneficial for DSPs and FLSs (Clarke et al., 2020).

Key Reflections on COVID-19: What Have We Learned About the Experiences of People with Intellectual and Developmental Disabilities?

The COVID-19 pandemic has also been challenging for people with IDD. Consistent themes across the 6-, 12- and 24-month surveys included three-quarters of respondents reporting people missed going out into the community (79%, 73%, 73%) and about half exercised less (56%, 54%, 53%), and felt increased anxiety (52%, 49%, 56%). Boredom decreased slightly across surveys (80%, 71%, 68%, 68%). Mood swings and/or depression (57%, 51%, 49%, 56%), behavior issues (52%, 48%, 48%, 54%), and loneliness (48%, 44%, 43%, 46%) went down initially and increased at the 24-month survey. Initial decreases in these experiences may be due to increased social interactions as restrictions began to be lifted; however, an uptick of stresses in other areas may have been a factor in a return to increased negative consequences.

Moving Forward – What is Needed for Direct Support Professionals and Frontline Supervisors

Ensure Direct Support Professionals and Frontline Supervisors are identified as essential workers in comprehensive, organized, and funded emergency response plans at national and state levels. Essential worker status is imperative for this workforce in order to retain them in their jobs. This status and pay may give DSPs and FLSs the financial support needed to remain in their jobs. Establishing a standard occupational classification (SOC) code for DSPs and FLSs is an effective way to support and recognize this workforce.

Access to support and childcare if daycares or schools close. Essential worker status for this occupation would make childcare availability for these families a priority in most states. This workforce is comprised of a large percentage of single mothers with children (Hewitt et al., 2019; PHI, 2019). Future public health approaches in response to pandemics and other emergency responses need to include childcare access so ensure essential workers in DSP and FLS roles can continue to work.

Wage increases for essential workers proportionate with increased risk exposure. Human interaction plays a large role in direct support and puts employees at increased risk for their own health outcomes. In this case, it was contracting COVID-19. By the 24-month survey, 53% of respondents reported they were paid higher wages during the pandemic, and 16% were working 31 or more overtime hours. DSP and FLS wages need to be augmented similarly to other healthcare and essential workers during national crises and future pandemics. Establishing state-level and national policies to include DSPs and FLSs needs to be changed now in order to be prepared for future emergencies.

Guarantee wellness and health programs are available for DSPs and FLSs. At the 12- and 24-month surveys, half of respondents reported anxiety (47%, 56%) and physical and/or emotional burnout (50%, 55%) as a result of working as a result from working during the COVID-19 pandemic. Between 36%-43% indicated experiencing sleep difficulties and/or depression with nearly one-fifth (18%, 21%) having physical health complication. Other mentioned struggles included other mental health issues, PTSD, suicidal ideation and loss of a loved one. Employers need to recognize the impact these issues have on employee physical and mental health which may also directly and indirectly affect their work. As recommended for direct support workforce in other sectors, DSPs and FLSs may benefit from access to support and counseling (Clarke et al., 2020).

Comprehensive, organized and funded response plans at national and state levels for future natural disaster emergencies and pandemics. Whether a natural disaster emergency or another pandemic, with the proximal nature of their work, DSPs and FLSs are at high risk of being exposed to infection through circumstances resulting from disaster (e.g., flooding, hurricanes, tornados) as well as from working with people who are at higher risk for infection and other complications from viruses. Employers need to have existing emergency plans that can be activated at a moment’s notice. It is important to have PPE readily for DSPs and FLSs to protect everyone’s health and safety. Some safety measures that were developed during the pandemic may be considered as standard practice (e.g., additional cleaning, training on health and safety for staff), but it is also important to have learned from COVID-19 what safety measures should be immediately implemented for disasters and/or pandemics in the future (e.g., PPE, social distancing, visitor restrictions, quarantine procedures, temperature taking, and vaccination protocol, if needed). Specific to new pandemics, if vaccinations are a component of the solution, educational materials depicting DSP and FLS high risk of exposure, vaccination campaigns, and incentives provided to get workers vaccinated are important.

Moving Forward – What is Needed for People with IDD

Develop strategies for accessing and using telehealth. On top of mental and physical health issues, respondents reported that the people they supported had greater increased challenges in managing their diet (14%-17%) and pain (5%-7%). Work is needed within the medical community to ensure people get the healthcare they need. Availability of telehealth appointments may help alleviate these issues by increasing access to supports.

Guarantee access to technology for people with IDD that facilitates social interaction. Across the surveys, over half of the respondents reported depression (49%-57%), loneliness (43%-48%), and boredom (68%-80%) among the people they support as consequences of social isolation related to the COVID-19. At the 24-month survey, nearly 60% of respondents indicated the people they supported were using internet-enabled devices for videoconferencing and social media to connect with others. Over half (52%) reported the people they supported were using technology somewhat or a lot more now compared to the beginning of the pandemic. Technology offers a safe socializing option and helps people have greater control over their lives. Access to virtual social interaction, in the absence of being able to go out into the community or see family and friends are imperative for future public health crises.

Conclusion

March 13, 2020, marked the day the COVID-19 pandemic was declared a national emergency. More than two years later, while social distancing, mask wearing and lockdowns are no longer, the crisis is not over. The results of these surveys highlight the work and personal challenges faced by direct support workers during this difficult time. The findings accentuate numerous systemic problems with the vulnerability of the direct support workforce and provision of services for people with intellectual and developmental disabilities. Significant policy change needs to address systemic challenges of high turnover and vacancy, low wages, and the effects these challenges on the lives of direct support workers and the people with intellectual and developmental disabilities. Health and wellness programs, along with employer support, need to be accessible to the direct support workforce. Disparities in health and wellness options for people with intellectual and developmental disabilities, and equity issues for direct support workers of color need to be acknowledged and resolved. While there are many challenges to overcome, the findings of these surveys highlight opportunities to invest in understanding in order to take action to improve the workplace experience for DSPs and FLSs and the life experience of those with intellectual and developmental disabilities.