Providing Support During the COVID-19 Pandemic

Direct Support Workforce and COVID-19 National Report: 24-Month Follow-up

September 2022

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. This is a twenty-four-month follow-up to the initial report published in fall of 2020.

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.

Please contact Jerry Smith with questions.

SHORT REPORT: Download the four-page PDF version of the Direct Support Workforce and COVID-19 National Report: 24-Month Follow-up .

Suggested Citation:

Pettingell, S., Bershadsky, J., Hewitt, A., Lahti Anderson, L., Hall, S., Smith, J., Sanders, M., Kleist, B., Zhang, A., & Oteman, Q. (2022). Direct Support Workforce and COVID-19 National Survey Report: 24-month Follow-up. Institute on Community Integration, University of Minnesota.

Introduction

In March of 2020, across the United States, many schools, businesses, and organizations that support individuals with disabilities implemented safety protocols, shut their doors, and began working and participating remotely or in very different ways because of the COVID-19 pandemic. Not only was it not an option to stop working for most direct support professionals (DSPs) and frontline supervisors (FLSs), their work continued in different ways and in some situations, different places. From the onset of the pandemic, friends and colleagues across the country told stories of the significant challenges in providing supports safely to individuals with intellectual and developmental disabilities (IDD) during the COVID-19 pandemic. At that time, the National Alliance for Direct Support Professionals (NADSP) and the University of Minnesota's Institute on Community Integration (ICI) staff knew it was imperative to hear directly from DSPs about their experiences in supporting people with disabilities during a global pandemic. In response, ICI developed four online surveys and collaborated with NADSP to hear the voices of DSPs from across the country throughout the pandemic. The initial survey was launched in April 2020 and surveys were completed by 8,914 respondents. Based on the results of the initial survey and evolving nature of the pandemic, some items on the initial questionnaire were slightly modified and some questions were added before ICI launched a 6-month follow-up survey in November 2020, which was completed by 8,846 respondents. The survey was once again reviewed and updated to reflect current realities of the pandemic for a third round of data collection, conducted in June-July 2021 and completed by 5,356 respondents. A year later, a fourth follow-up survey was fielded in June-July 2022 and completed by 2,657 respondents. All four surveys were intended to gather information about DSP experiences during the COVID-19 pandemic 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 primarily covers results from the fourth survey and identifies trends over time when available.

Background

DSPs and FLSs are instrumental in providing critical supports to people with intellectual and developmental disabilities (IDD) so they can work, live, and flourish in their communities. DSPs perform tasks similar to those of teachers, nurses, psychologists, occupational therapists, physical therapists, counselors, dieticians, chauffeurs, personal trainers, and others (Centers for Medicare and Medicaid Services, 2014; President’s Committee for People with Intellectual Disabilities, 2018). In addition to their primary role of guiding and directing the work of DSPs, FLSs often provide a significant amount of direct support to persons with IDD as well. There is currently no Bureau of Labor Statistics occupational classification for direct support professionals. Instead, they are typically classified under the occupational titles of personal care assistants, home health aides, certified nursing assistants, and others which is problematic (U.S. Bureau of Labor Statistics, 2021). DSPs do perform many similar tasks as these other groups; however, they have many additional responsibilities that are not contained in these other classifications. High skill is required for supporting people in the community; however, this is not reflected in DSP compensation and training. DSP wages have been chronically low for decades. Most DSPs pick up overtime hours or work multiple jobs to pay bills and support their families. Nearly half (45%) are dependent on public assistance of some kind (PHI, 2021) due to limited access to affordable benefits. Across the United States, this workforce is largely unknown and not given the value, respect, and visibility it deserves.

Documentation of the shortage of direct support workers has existed for nearly three decades. Forty-three percent of DSPs left their positions in 2020 with nearly one-third leaving in the first six months of employment. Vacancy rates were 12.3% for full-time and 16.4% for part-time positions (National Core Indicators, 2022a). Consequences of high vacancies include DSPs, FLSs, and other staff having to regularly work overtime to provide supports (Hewitt et al., 2019; Test et al., 2003) and individuals with IDD going without authorized supports that they need. The latter affects family members as they frequently must provide these supports themselves, which affects their ability to adequately meet their own employment demands (Anderson et al., 2002). COVID-19 has exacerbated this already challenging situation. The threat of contracting COVID-19 instigated stay-at-home orders, social distancing guidelines, and other precautions that affected DSPs and the individuals to whom they provide support. People with IDD are not only more likely to contract COVID-19 (Gleason et al., 2021) but are at greater risk of mortality from COVID-19 than almost all other diagnosis types (Kaye, 2021). During the pandemic, people with IDD have experienced loss of employment and social isolation (Hewitt et al. 2020; Hewitt et al., 2021; Hewitt et al., 2021; National Core Indicators, 2022b). Throughout the pandemic, DSPs have typically been their primary supports.

The first vaccine for COVID-19 was made available in the United States in December of 2020 (NPR, 2021) and remains the country’s principal strategy for combatting this pandemic. In most states, caregivers were identified as early approved recipients of vaccinations due to the at-risk nature of their positions and because people with IDD were at extremely high risk of becoming infected and dying of COVID-19. At the time of the 12-month follow-up survey, vaccination mandates were just being implemented and booster shots were in development. In the 24-month follow-up survey, in order to further understand the vaccination experiences, a series of questions were added regarding initial hesitancy and what motivated respondents to get vaccinated.

Additionally, because of changes in how supports were being delivered, there was interest in exploring the use of technology during COVID-19 and how that affected DSPs’ and FLSs’ capacity to do their work and their perception of the impact it had on the individuals they support. Existing surveys were examined to see what and how these types of questions had been asked. Questions were either developed internally or modified for this survey. A series of questions was added to the 24-month follow-up survey to understand these issues.

The purpose of the initial, 6-month follow-up, 12-month follow-up, and 24-month follow-up COVID-19 DSP surveys was to gather information about the experiences of DSPs related to the COVID-19 pandemic to inform efforts to prepare for future waves of this and other pandemics. The first round of data collection took place in the early months of the pandemic response when there were many unknowns about how to support people with IDD and DSPs. The second round of data collection took place six months after the first and examined how workforce systems are supporting DSPs and frontline supervisors during the COVID-19 pandemic. The third round of data collection (the 12-month follow-up) took place about 12 months after the first survey. The fourth round of data collection took place about 24 months after the first, when life appeared to be returning to pre-pandemic routines and mask mandates and social distancing rules were relaxed in many places. The fourth survey was again administered online and examined how workforce systems are supporting DSPs and frontline supervisors two and a half years after the start of the pandemic, with additional focus on health and well-being, vaccination experiences, and the use of technology. The 24-month follow-up survey was completed by 2,657 respondents. The results of the fourth survey are presented in the current report. All surveys results are available at www.ici.umn.edu/covid19-survey.

The purpose of the initial, 6-month follow-up, 12-month follow-up, and 24-month follow-up COVID-19 DSP surveys was to gather information about the experiences of DSPs related to the COVID-19 pandemic to inform efforts to prepare for future waves of this and other pandemics.

Method

The fourth survey was administered using the online survey platform Qualtrics. Information on the survey and how to access the link was posted on ICI’s website, sent to ICI’s contacts across the United States, and circulated on social media. The National Alliance for Direct Support Professionals, along with many other partners (e.g. ANCOR, The Arc, NASDDDS), promoted the survey and distributed the link to DSPs and disability organizations across the country.

Of the 4,039 24-month follow-up surveys opened in Qualtrics, 14% opened the link but did not answer any items, 18% indicated they were DSPs but left the survey blank or answered less than 50% of the items, 2% were not DSPs or FLSs, and <1% did not reside in the USA. This left 2,657 surveys in the 24-month follow-up sample. Of those, 5% did not provide the state in which they worked. Analyses at the state level were reported for only those that provided the state item; those without state were reported only in the total sample results.

Of the 2,657 respondents who answered the question about if and when they previously took the Covid-19 DSP survey, 5% said April/May 2020, 4% said November/December 2020, 5% said June/July 2021, 62% had not previously completed it, and 32% could not remember if they had taken it in the past. This report, and the three reports before it, provide information from four different samples at four different points in time.

The final sample for the 24-month follow-up survey included 2,657 respondents.

Analysis

Quantitative Analysis

Descriptive statistics were provided for individual items. Using SPSS version 27 (IBM Corp, 2020), cross tabulation tables with Chi-square statistics, t-tests, and Oneway ANOVAs were run to look at relationships between two variables. These included a comparison of FLSs and DSPs on demographics, and an examination of the relationships between the primary setting where respondents worked and whether they had been exposed to COVID-19 and the number of people they served who had been diagnosed with COVID-19. To better understand the differences between setting types, the "other" category was excluded from analysis as it was small and included a variety of setting types. Setting types compared included agencies or facilities, family or individual’s homes, and community job or employment. Race groups were collapsed into Black or African American, White, and Other to explore relationships with working additional hours due to the COVID-19 pandemic, hourly wages, annual household income, and work life status. The “Other” category was composed of American Indian/Native American, Asian, Some Other Race, and Two or More Races due to the small numbers of respondents in each of these categories. Finally, additional consideration was given to the relationship between annual household income and whether the survey respondent was the primary wage earner. All relationships were also examined for ethnicity groups. Significant differences are described in the text and are indicated in charts and tables, when applicable, with an asterisk.

Qualitative Analysis

There were five open-ended questions. Key words and terms were identified for each of these questions that described each subtheme, and frequencies were calculated using NVivo (QSR International Pty Ltd, 2018). The responses were read by two researchers to reduce bias when choosing themes. Narrative summaries were written for the themes in each of the five questions followed by quotes from respondents.

Respondent Participation by State

Figure 1. Number of respondents in the 24-month follow-up survey by state/territory of employment

4The 2,537 respondents who reported the state or territory in which they worked were located in most of the 50 United States and the District of Columbia (see Figure 1). There were six states with no respondents (11%), 41 states (76%) that had 1-100 respondents, five (9%) had 101-250 respondents, one (2%) had 251-400 respondents, and one (2%) had more than 400 respondents. Individual state reports are available for states with at least 200 respondents at http://z.umn.edu/dsp-covid19 .

Results – Employment Information

Job Titles

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 2,639 employees who answered the question on role included:

● 76% Direct Support Professionals,

● 22% Frontline Supervisors,

● 1% Certified Nursing Assistant (CNA), and

● 1% Other, including, Behavior Case Manager, Early Interventionist, Educator, Medical Liaison, LPN, Nurse, PCT, Physical Therapist, Positive Support Analyst, and Psychologist.

The primary respondents in the survey were DSPs, although FLSs comprised nearly one-quarter of the respondents. A small number of respondents were CNAs or other positions providing direct support to people with IDD. These percentages are similar to those from the three previous surveys.

Job Tenure

The respondents (85%) had longer tenure with their primary employer, with the majority working for their primary employer for more than 36 months. This is higher than the initial survey (59%), 6-month (62%) and 12-month (66%) follow-up surveys. Additionally, in the 24-month survey, 5% had worked at their primary employer for 24-36 months, 4% for 12-24 months, 4% for 6-12 months, and 2% for less than 6 months. The results are presented in Figure 2.

Figure 2. Percentage of respondents in 24-month follow-up survey by length of time working in direct support at primary employer

Settings Where Supports Were Provided

Survey respondents reported the primary setting where they provided supports (Figure 3). Sixty-five percent provided support primarily in agency or facility settings (e.g., group home, sheltered workshop), 25% in family or individual homes, 8% in community employment or job sites, and 2% in other sites. Other sites included a mixture of places or multiple places, 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%) provided services in more than one setting. There were higher percentages of respondents in the initial survey working in family or individual homes (39%) and community employment/job sites (17%), higher percentages of respondents at the 6-month follow-up working in family or individual homes (31%), and 12-month follow-up survey percentages were similar to those in the 24-month follow-up survey.

Figure 3. Percentage of respondents in the 24-month follow-up survey working primarily in service setting types

Results – Demographic Characteristics

Gender, Age, Race, Ethnicity, & Immigration Status

Respondents provided information about their gender identity, age, race, ethnicity, and immigration status. In the 24-month survey, 82% identified as women (including transgender women), 16% men (including transgender men), and 1% non-binary and preferring to self-describe, respectively. The average age was 47 years. Respondents reported their race as:

76% White,
13% Black or African American,
2% American Indian or Native American,
2% Asian,
5% two or more races, and
2% another race not listed.

Seven percent of respondents indicated their ethnicity as Hispanic, Latino, or Spanish origin, and 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 congruent with other studies in the IDD sector where 49% of the workforce is identified as people of color (National Core Indicators, 2022a).

Wages Paid and Primary Wage Earner Status

Seventy-three percent of respondents were the primary wage earner in the household, which was comparable to those in the initial, 6-, and 12-month follow-up surveys. 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 without salary augmentations added for essential workers by some states and/or employers due to the COVID-19 pandemic. Wage-related information was summarized by employee type. For DSP positions in the 24-month follow-up survey, the average pre-pandemic hourly wage was $15.31 (median = $15.00, range $6.55 to $40.00). The other types of workers, except CNAs, were paid higher wages on average than DSPs. Frontline supervisors made, on average, $19.85 per hour (median = $19.00, range $8.00 to $60.00). CNAs made, on average, $14.88 per hour (median = $15.00, range $10.25 to $20.19). Other positions made, on average, $24.41 per hour (median = $19.80, range $12.00 to $56.00).

Respondents were also asked to report their current hourly wage rate. For DSP positions, the average hourly wage was $16.58 (median = $16.00, range $6.43 to $40.00). This is higher than the national average, $13.61 (National Core Indicators, 2022a), likely due to the longer tenure of this sample. Frontline supervisors made, on average, $21.80 per hour (median = $21.00, range $10.44 to $60.00). CNAs made, on average, $15.83 per hour (median = $15.00, range $12.75 to $21.48). Other positions made, on average, $25.37 per hour (median = $20.00, range $12.00 to $60.00). Table 1 details wage and primary wage earner information for DSPs. There were no significant differences in wages by race or ethnicity.

Table 1. Wage and primary wage earner status in the 24-month follow-up survey

Average pre-pandemic hourly wage of DSPs* (DSPs only)	$15.31
Average current hourly wage of DSPs* (DSPs only)	$16.58
Received salary augmentation as Essential Worker (all respondents)	53%
Self-identified as the primary wage earner in their household (all respondents)	73%

* FLSs and other licensed staff (a total of 24% of the sample) were excluded from calculation of average wages.

Salary Augmentation for Essential Workers

Ninety-seven percent 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 disabilities, half (53%) of respondents in this 24-month follow-up survey reported that they received a salary augmentation due to the COVID-19 pandemic. This number was 24% in the initial survey, 30% in the 6-month follow-up survey, and 27% in the 12-month follow-up survey. For those who indicated that they received a salary augmentation, the amount of the wage increase in the 24-month follow-up survey is depicted in Figure 4.

Figure 4. Amount of wage increase for those reporting receiving extra pay due to COVID-19 risks in the 24-month follow-up survey

Education

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

70% of respondents had education beyond high school.

Household Size and Income

Including themselves, the average number of people living in respondent households was three. Respondents reported their average household annual income which included their income plus others in the household. Household income ranges were:

4% said $14,999 or less,
7% said $15,000 to $21,999,
28% said $22,000 to $39,999,
51% said $40,000 to $99,999,
10% said over $100,000

For a family of three, the federal poverty level is considered $21,960 or less (US Department of Health and Human Services, 2021). In the current study, 12% of survey respondents had both a household of three and an income less than $21,999.

Annual Household Income by Primary Wage Earner Status

There were significant differences between respondents who were and were not primary wage earners and annual household income (see Figure 5). Forty-five percent of those who were the primary wage earners in their households reported $39,999 or less for their annual household income compared to 19% of those who were not the primary wage earners in their households. There were significant differences between primary wage earner status and annual household income for all but the lowest income level. Those who were primary wage earners had a higher percentage of annual incomes of $15,000 to $21,999 (8% vs. 3%), and $22,000 to $39,999 (33% vs. 13%) compared to households where the participant was not the primary wage earner. Conversely, households where participants were not the primary wage earner had higher percentages of annual incomes of $40,000 to $99,999 (56% vs. 51%), and $100,000 or more (25% vs. 4%) compared to households where the participant was the primary wage earner. Results from the 24-month survey show higher annual household incomes than the 6- and 12-month follow-up surveys; 64% and 59% of those who were the primary wage earners in their households reported $39,999 or less for their annual household income compared to 25% and 20% of those who were not the primary wage earners in their households, respectively.

Annual Household Income by Race and Ethnicity

There were no significant differences between race groups and annual household income which differs from the 12-month follow-up survey. There were significant differences between those who were and were not of Hispanic, Latino, and Spanish descent and annual household income (see Figure 6). A higher percentage of respondents with a Hispanic, Latino or Spanish origin made $14,999 or less (7% vs. 4%) and $15,000 to $21,999 (14% vs. 6%) compared to those without a Hispanic, Latino, or Spanish origin. A higher percentage of respondents without a Hispanic, Latino or Spanish origin (53%) had annual household incomes of $40,000 to $99,999 compared to those with a Hispanic, Latino or Spanish origin (40%).

Figure 6. Annual household income by ethnicity in the 24-month follow-up survey

Results – Impact of Pandemic on Staffing Patterns and Practices

Days Worked and Additional Work Hours Due to COVID-19

In the 24-month follow-up survey, 1% of respondents worked one day a week, 2% two days, 6% three days, 11% four days, 58% five days, 14% six days, and 8% seven days a week. Additionally, 59% of respondents acknowledged feeling pressure to work more hours or days in a week. When asked about working additional hours in a week due to COVID-19, a third (35%) of respondents reported working 1 to 15 additional hours per week due to the COVID-19 pandemic, 16% worked 16 to 30 additional hours per week, and 16% worked 31+ additional hours per week due to the pandemic. Thirty-three percent did not work any additional hours per week due to the COVID-19 pandemic (see Figure 7). The percentage of respondents working 31+ additional hours per week was comparable to both the initial (15%) and 6-month follow-up (17%) surveys but was lower than the 12-month follow-up survey (24%).

Figure 7. Percentage of respondents in the 24-month follow-up survey working additional hours per week due to COVID-19

Additional Work Hours Due to COVID-19 by Race and Ethnicity

In the 24-month follow up survey, there were significant differences between race groups and the number of additional hours worked weekly due to COVID-19 (see Figure 8). A higher percentage of respondents identifying as White (34%) and Other (37%) worked no additional hours compared to Black/African Americans (26%). Respondents identifying as White (38%) and Other (32%) also had higher percentages of working 1-15 additional hours compared to Black/African Americans (23%). Black/African American (22%) respondents had a higher percentage of working 16-30 additional hours weekly compared to White (16%) and Other (11%) respondents and a higher percentage of working 31-40 additional hours weekly (12%) compared to White (6%) respondents. Black/African American (17%) and Other (12%) respondents also had higher percentages of working 40 or more additional hours a week due to COVID-19 than White (6%) respondents.

Figure 8. Additional weekly hours worked in the 24-month follow-up survey by race

There were also significant differences between those who were and were not of Hispanic, Latino, and Spanish descent and the number of additional hours worked weekly due to COVID-19 (see Figure 9). A higher percentage of respondents without a Hispanic, Latino or Spanish origin (17%) worked 16-30 extra hours per week while a significantly higher percentage of those with a Hispanic, Latino, and Spanish origin (13%) worked 31-40 hours extra per week.

Figure 9. Additional weekly hours worked in the 24-month follow-up survey by ethnicity

Changes in Work Schedule

Sixty-two percent of respondents indicated their work schedules and responsibilities had changed since the beginning of the pandemic. They were also asked to check all that apply from a list of ways that the pandemic had affected their work schedule. The following effects were reported:

68% had additional responsibilities/different roles,
60% working more hours per week,
45% working different shifts,
40% working in different settings,
37% providing supports to different people,
12% working remotely/telehealth/virtual,
6% working less hours per week,
4% were furloughed/laid off/unemployed/facility closed, and
8% identified other changes.

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/virtual, 18% worked less hours per week, and 2% were furloughed/laid off/unemployed/facility closed. 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/virtual, 12% worked less hours per week, and 6% were furloughed/laid off/unemployed/facility closed. By the 12-month survey, 30% worked more hours per week, 26% worked different shifts, 20% worked in different settings, 3% worked remotely/telehealth/virtual, 5% worked less hours per week, and 3% were furloughed/laid off/unemployed/facility closed.

Pandemic Impact on Turnover and Vacancy

When asked about the reason(s) respondents or any of their coworkers were not currently working, 11% cited family reasons (e.g., caring for someone with health issues, homeschooling kids), 9% noted fear of becoming infected with COVID-19, 11% cited childcare issues (e.g., no daycare available), 14% cited needing to quarantine due to COVID-19 exposure, 20% cited testing positive for COVID-19, 5% noted fear of infecting others, and 5% noted other reasons (see Figure 10). With the exception of testing positive for COVID-19, these percentages are lower than in previous surveys. Nine percent, 13%, and 12% cited testing positive for COVID-19 as a reason for coworkers not currently working in the initial, 6-month, and 12-month surveys.

Figure 10. Reasons cited by respondents in the 24-month follow-up survey that they or any of their coworkers were not currently working

Newly Hired Staff

In the 24-month follow-up survey, respondents were asked if, at the sites where they worked, new staff had been hired in the past six months. Seventy-two percent indicated new staff had been hired in this timeframe. And, of those who had hired new staff in the past six months, 39% said new staff were qualified to do the work, 52% said some were and some were not qualified to do the work, and 9% said that new staff were not qualified to do the work.

Results - Safety Measures

Provision of Personal Protective Equipment

Personal protective equipment (PPE) was in short supply as the pandemic began. Two and a half years after the start of the pandemic, 90% of respondents said they have enough PPE; however, 15% said they had to pay for their PPE out of pocket. The percentage of those having to pay out of pocket for their PPE was 5% less than in the 12-month follow-up survey (20%).

Safety Measures Put in Place in Response to COVID-19

Respondents reported on the types of safety measures put into place by their employers. The safety measures reported in the 24-month follow-up survey included:

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

Five percent of respondents said no safety measures had been put into place. In the initial survey, 66% of staff had their temperatures taken before their shifts. In the 6-month follow-up survey, 67% reported additional cleaning required, 72% reported taking staff temperatures before their shifts, 65% were provided training on health and safety, 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, 63% reported taking visitors’ temperatures, 58% reported restrictions on visitors, and 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. The safety measures regarding vaccination were not asked in the initial or 6-month follow-up surveys.

Results – Respondent Work Life

Respondents were asked how they were feeling about their work life two and a half years after the start of the pandemic. As shown in Figure 11, 5% indicated their work life was much better, 15% said better, 33% said the same, 36% said worse, and 11% said much worse. This is an improvement from the 6-month follow-up survey where 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. However, the 24-month results are worse than the 12-month follow-up survey where 6% indicated their work life was much better, 19% said better, 40% said the same, 26% said worse, and 9% said much worse. This question was not included in the initial survey.

Figure 11. Respondent work life status in 24-month follow-up survey

Work Life Status by Race and Ethnicity

As seen in Figure 12, there were significant differences between race groups and whether their work life status had changed since the beginning of COVID-19. A significantly higher percentage of respondents identifying as Black/African American said life was much better (9%) and better (21%) compared to White respondents (4% and 15%). A significantly higher percentage of White (37%) respondents felt their work life was worse compared to Other (29%). And, White (11%) and Other (14%) respondents had higher percentages of feeling life was much worse than Black/African American (7%) respondents. There were no significant differences between those who were and were not of Hispanic, Latino, and Spanish descent and work life status change since the beginning of the pandemic.

Figure 12. Work life status in the 24-month follow-up survey by race

When asked if they would stay in their job for at least another six months, 79% of respondents said yes, 17% were unsure and 4% said no.

Results - Pandemic Health and Wellness Experiences Due to COVID-19

In the 24-month follow-up survey, respondents were asked about their health and wellness and if they had experienced specific issues due to COVID-19. Health and wellness related issues reported included:

56% 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. In the 24-month survey, with the exception of suicidal ideation and other issues, these numbers were higher than in the 12-month follow-up survey. In the 12-month follow-up 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. Loss of a loved one, PTSD, and other mental health issues were not asked at 12-months.

Figure 13. Impact of mental & physical health experiences on work life in 24-month follow-up survey

Respondents were asked how much these mental and physical health experiences affected their daily work. As shown in Figure 13, 33% indicated their daily work life was affected a lot, 44% said some, 17% said a little, and 6% said not at all. They were also asked if their employer did anything to provide support to staff struggling with these issues. Nearly a third (32%) said no, 39% said yes, and 29% did not know.

Results – COVID-19 Diagnosis

COVID-19 Diagnosis for Respondents

As seen in Figure 14, half (52%) of respondents in the 24-month follow-up survey said they had received a positive COVID-19 diagnosis, 42% said they had never tested positive, and 6% had no official diagnosis but suspected they had it. This positivity rate is higher than in the 12-month follow-up survey where there were only 19% with a COVID-19 diagnosis.

Figure 14. Percentage of respondents in the 24-month follow-up survey who have had COVID-19 diagnosis

COVID-19 Diagnosis for People Receiving Supports

At the time of the 24-month follow-up survey, 21% of respondents had supported 1-2 people who had been 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 Figure 15). Seventeen percent of respondents had not supported anyone diagnosed with COVID-19. This compares to 91% of respondents in the initial survey, 59% in the 6-month follow-up survey, and 44% in the 12-month follow-up survey who had not yet supported anyone with a diagnosis of COVID-19.

Figure 15. Number of people supported who have had a COVID-19 diagnosis in 24-month follow-up survey

Percentage of People Supported Who had COVID-19 Diagnosis by Setting Type

As seen in Table 2, there were significant differences between setting type where the respondent worked the majority of their time with the number of people supported who had a COVID-19 diagnosis. Respondents working in agency/facility sites (88%) and community job/employment sites (85%) had higher percentages of supporting individuals with COVID-19 diagnoses compared to those in family or individual homes (68%). Respondents working in family or individual homes had a higher percentage of not supporting any people with a COVID-19 diagnosis (32% vs. 12% and 15%) and 1-2 people with a COVID-19 diagnosis (32% vs. 18% and 15%). Respondents working in agency/facility sites had a higher percentage of supporting 3-5 people with COVID-19 (27% vs. 15% and 20%). Respondents working in agency/facility sites (19%) and community job/employment sites (16%) had higher percentages then those in family or individual homes (10%) with respect to supporting 6-10 people with a COVID-19 diagnosis.

Respondents working in agency/facility sites, family or individual homes, and job/employment sites all had a significantly different percentages of working with 11 or more individuals with a COVID-19 diagnosis (24%, 11%, and 34%).

Table 2. Percentage of people supported with COVID-19 in the 24-month follow-up survey by setting type

# People Supported with COVID-19	Agency/Facility	Family/Individual Home	Community Job/Employment
None	12%	32% *	15%
1-2 people	18%	32% *	15%
3-5 people	27% *	15%	20%
6-10 people	19% *	10%	16% *
11 or more people	24% *	11% *	34% *
Total	100%	100%	100%

* Family/Individual Home had a significantly higher percentage of supporting no people and 1-2 people with COVID-19 diagnosis; Agency/facility sites had a significantly higher percentage of supporting 3-5 people; Agency/facility sites and community job/employment sites had significantly higher percentages of supporting 6-10 people; All site types differed significantly in percentage supporting 11 or more people with COVID-19.

Results – Impact of COVID-19 on People Receiving Supports

When asked if visitors are restricted when the people they support get COVID-19, 88% of respondents said yes.

Respondents were asked about the consequences the people they supported were experiencing due to the social isolation from the COVID-19 pandemic. The 24-month follow-up survey respondents reported the following consequences experienced by the people they supported:

73% missed going out into the community,
68% boredom,
53% decreased exercise,
56% more anxiety,
56% increased mood swings and/or depression,
54% increased behavior issues,
46% loneliness,
43% sleeping more than usual,
33% regression,
14% difficulty addressing dietary issues,
14% other health issues,
10% sleeping less than usual,
7% difficulty addressing pain management, and
7% academic concerns.

Twelve percent said they had seen no negative consequences from social isolation among people supported. 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. The other consequences of social isolation measures were not asked in the initial survey. In the 6-month follow-up 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. Percentages in the 12-month follow-up survey were similar to the 6-month follow-up survey.

Return to Pre-pandemic Activity

In the 24-month follow-up survey, respondents were asked the extent they felt the people they supported had their life back to pre-pandemic levels. Seven percent said completely, 33% said mostly, 51% said somewhat, and 9% said not at all. This is a small improvement from the 12-month follow-up survey where respondents felt the people they supported had their life back completely (5%), mostly (29%), somewhat (56%), and not at all (10%). Respondents were also asked the extent to which several common activities returned to normal pre-pandemic levels for the people they supported. Figure 16 shows percentage of respondents who reported on the activities that have returned to normal level for the people they support using a scale of not at all, somewhat, mostly, or completely. There was improvement with participation levels in all activities compared to the 12-month follow-up survey.

Twenty-four percent of respondents said volunteering in the community has not at all returned to pre-pandemic levels for the people they support, 35% said somewhat, 22% mostly, and 19% completely. For seeing friends, 6% of respondents said not at all, 37% said somewhat, 30% said mostly, and 27% said completely. Three percent of respondents said seeing family has not at all returned to normal levels for the people supported, 31% somewhat, 31% mostly, and 35% completely. For going on vacation, 24% of respondents said not at all, 35% somewhat, 21% mostly, and 20% completely. Twelve percent of respondents said working their jobs has not at all returned to normal for people supported, 25% said somewhat, 29% mostly, and 34% completely. For attending day program(s), 14% of respondents said not at all, 26% somewhat, 27% mostly, and 33% completely. Seventeen percent of respondents said not at all for spending time in a faith community, 39% said somewhat, 23% mostly, and 21% completely. For going shopping or running errands, 8% of respondents said not at all, 39% said somewhat, 30% mostly, and 23% completely. Eighteen percent of respondents said going to entertainment venues (e.g., movie theaters, concerts, sporting events, etc.) has not at all returned to normal for the people they support, 47% said somewhat, 21% mostly, and 14% completely. For going out to eat, 11% of respondents said not at all, 47% said somewhat, 25% mostly, and 17% completely.

Results – Vaccinations

Respondents were asked if they had been vaccinated against COVID-19. Eighty-four percent said they were vaccinated, and 16% said they were not vaccinated (see Figure 17). This is an improvement from the 12-month follow-up survey where 69% said 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. In addition, 67% of those who were vaccinated had also gotten their booster shot in the 24-month follow-up survey.

Figure 17. Respondent vaccination status in the 24-month follow-up survey

Figure 18. Motivation to get vaccinated after initial hesitancy in the 24-month follow-up survey

Motivation for Vaccinating

Respondents who were vaccinated were asked several questions about their experiences. Forty-two percent of vaccinated respondents were initially hesitant, waiting more than three months after becoming eligible, before getting vaccinated. As seen in Figure 18, when asked what motived them to get vaccinated, 56% wanted to protect family members or the people they support from getting COVID-19, 49% wanted to protect themselves from getting COVID-19, 38% worked for an employer that had a vaccine mandate, 22% knew people who had gotten sick with COVID-19, 14% had themselves gotten sick with COVID-19, 10% the state in which they worked had a vaccine mandate, 8% financial incentive from their employer, 3% said financial incentive from the state, and 9% gave another reason. Themes that emerged in the other reasons included: their client(s) requested they get vaccinated, their doctor recommended it, there was a mandate outside of their workplace, they felt pressure from others, they wanted to travel, and they wanted to participate in activities.

Vaccination Hesitancy

Sixteen percent of respondents reported not being vaccinated. That is an improvement since the 12-month follow-up survey where 26% were not vaccinated. Reasons for their choice not to be vaccinated included the following:

56% of non-vaccinated respondents were concerned about side effects (short and long-term),
53% did not feel it is safe,
33% did not believe in the worth of vaccinations,
27% did not feel they need it,
24% said it was against their beliefs/spiritual beliefs,
14% had doctor recommendation not to get it due to a pre-existing condition,
2% had difficulty accessing a time and place to get it,
2% reported cost,
<1% were not eligible, and
10% listed another reason.

Common themes from other reasons included: allergies, strongly opposed to vaccinations in general, conspiracy theories/politics, simply do not want to get it, had COVID-19/has antibodies, not enough research/need more research, pregnant/breastfeeding/fertility issues, and other health issues. The reasons for not getting vaccinated were comparable to those given in the 12-month follow-up survey: 54% did not feel it is safe, 22% did not feel they need it, 21% did not believe in the worth of vaccinations, 1% had difficulty accessing it, 1% were not eligible, <1% reported cost, and 23% listed another reason. Options of against beliefs/spiritual beliefs and doctor recommendation not to get it due to pre-existing conditions were not offered in the 12-month survey.

All respondents were also asked separately about reasons any of their coworkers were hesitant to get vaccinated. Reasons listed for coworkers being hesitant to get vaccinated included:

51% did not feel it is safe,
46% were concerned about side effects (short and long-term),
38% did not believe in the worth of vaccinations,
34% did not feel they need it,
24% said it was against their beliefs/spiritual beliefs,
12% had doctor recommendation not to get it due to a pre-existing condition,
1% had difficulty accessing a time and place to get it,
1% reported cost,
1% were not eligible, and
3% listed another reason.

Common themes from other reasons included: vaccinated people still get COVID-19, conspiracy theories/politics, not enough research/need more research, and pregnant/breastfeeding/fertility issues. And, while some were still hesitant, it was mandatory, so they had to get it.

Seven percent of respondents said they did not have any coworkers who were hesitant to get vaccinated.

In the 24-month follow-up survey, 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. These numbers are all lower than in the 12-month follow-up survey, where 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.

Vaccination of People Supported

Respondents were asked how many of the people they support with IDD were vaccinated. Three percent said none, 3% said fewer than half, 37% said more than half, and 57% said all of the people they support were vaccinated. These numbers are comparable to the results from the 12-month follow-up survey.

Results – Technology and COVID-19

When the pandemic struck the United States and the country went into lockdown, work continued for many but in different ways. Technology became a focus as some respondents were delivering services, and the people they supported were receiving them, remotely or in a virtual environment.

Respondents were asked what types of technology were used by the people they supported in their everyday lives. As seen in Figure 19, 62% said internet-enabled device for social media (such as a phone, laptop, or iPad), 57% said videoconferencing (such as Zoom or Skype), 26% said internet-enabled device for transportation and GPS (such as a phone, laptop, or iPad), 19% said medication dispensing, 15% said remote home monitoring, and 2% said another type of technology not listed. Themes for other responses included: communication device, entertainment purposes, and a general device with no purpose explicitly listed.

Figure 19. Technology types used in everyday life by people supported in the 24-month follow-up survey

Staff Confidence in Using Technology

Respondents were also asked the extent to which they felt confident using the technologies that the people they support use. Figure 20 shows percentage of confidence from respondents who reported on the technology types the people they support use. They answered only for those options that applied to their work. The confidence scale included response choices of not at all confident, a little confident, somewhat confident, or very confident.

Figure 20. Respondent confidence using technology of the people they support in the 24-month follow-up survey

Fifty-six percent of respondents who supported people using videoconferencing (such as Zoom and Skype) said they felt very confident using it, 29% were somewhat confident, 11% were a little confident, and 4% were not at all confident. Forty-eight percent of respondents who supported people using remote home monitoring (such as video monitoring, home-based sensors, and smart alarms) said they felt very confident, 36% were somewhat confident, 10% were a little confident, and 6% were not at all confident. Sixty-seven percent of respondents who supported people using medication dispensing said they felt very confident using it, 21% were somewhat confident, 9% were a little confident, and 3% were not at all confident. Fifty-nine percent of respondents who supported people using internet-enabled devices for social media (such as a phone, laptop, or iPad) said they felt very confident, 30% were somewhat confident, 8% were a little confident, and 3% were not at all confident. Sixty percent of respondents who supported people using internet-enabled devices for transportation and GPS (such as a phone, laptop, or iPad) said they felt very confident using it, 28% were somewhat confident, 10% were a little confident, and 2% were not at all confident. Thirty-eight percent of respondents who supported people using another technology option said they felt very confident using it, 38% were somewhat confident, 12% were a little confident, and 12% were not at all confident.

Support for Technology Use

Respondents were asked the level of support their employer provides to make sure staff understand the technology used by the people they support. As see in Figure 21, 33% said their employer provides a lot of support, 14% said some support, 36% said a little support, and 17% said none.

Additionally, 72% of respondents reported that they know whom to talk to if the technology used by the people they support is not working properly, 8% said no, and 20% were not sure.

Use of Technology Since Beginning of COVID-19

Respondents were asked to compare the current technology use by the people with IDD they support and themselves with their use at the beginning of the pandemic. As seen in Figure 22, compared to the beginning of COVID-19, they reported 24% of the people they support use technology a lot more, 28% somewhat more, 38% about the same, 5% somewhat less, and 4% a lot less. For themselves, compared to the beginning of COVID-19, 32% reported using technology a lot more, 27% somewhat more, 36% about the same, 2% somewhat less, and 3% a lot less.

Figure 22. Technology use now compared to the beginning of COVID-19 in the 24-month follow-up survey

Overall Impact of Technology on Work

Respondents were asked about the overall impact the use of technology (such as video conferencing or remote supports) had on the people they support and on their own work. As seen in Figure 23, with respect to the people they support, 3% said a very negative impact, 17% said somewhat of a negative impact, 30% said no impact, 36% said somewhat of a positive impact, and 14% said a very positive impact. For themselves and the impact technology had on their work, 3% said a very negative impact, 14% said somewhat of a negative impact, 29% said no impact, 36% said somewhat of a positive impact, and 18% said a very positive impact.

Figure 23. Overall impact of technology use in the 24-month follow-up survey

In addition, for those who used technology for their work, they were asked how much they liked providing services in that manner. Twenty percent said very much, 46% somewhat (it’s okay), 17% a little, and 17% not at all.

Results - Survey Respondent Perspectives on Turnover & Vacancy

There were two questions about the impact of turnover and vacancies that allowed respondents to respond in an open-ended format:

What are one or two major ways that staff turnover and vacancies at your primary employer (if any) have affected you and your co-workers?
What are one or two major ways that staff turnover and vacancies at your primary employer (if any) have affected the people you support?

What are one or two major ways that staff turnover and vacancies at your primary employer (if any) have affected you and your co-workers?

Though some (6%) staff indicated that they were not affected (e.g., not affected, NA, none), there were a variety of ways respondents were affected by staff turnover and vacancies during the COVID-19 pandemic. The effects of turnover and vacancies on respondents include:

Pressure to Cover Shifts. Staff experienced pressure, and sometimes had mandates, to cover vacant shifts.

“Having to work or being pressured to work more shifts due to vacancies and lack of staff.” (DSP)
“As a frontline supervisor, I am expected to fill any open shifts that DSPs are not available to cover. Vacancies put pressure both on DSPs and on myself in this team to work extra shifts.” (FLS)
“I have been mandated to work additional hours to cover the staffing shortages.” (DSP)
“Everyone is getting mandated for overtime and we are exhausted.” (FLS)
“When coverage cannot be found, we mandate a staff from the prior shift.” (FLS)

Increased Hours and Overtime. Staff were needed to work more and longer hours, often requiring a good deal of overtime. Expressed examples include:

“We all have had to work more hours due to losing staff.” (DSP)
“There’s long hours and there’s always shifts open so you never get a break.“ (FLS)
“We all have to pull longer shifts - often 24 or more hours consecutively.” (DSP)
“Many staff work overtime to cover the vacant shifts.” (FLS)
“My coworkers not showing up to work their shifts and I have to work overtime.” (DSP)
“As time has gone and many are more stressed they become less willing to work the necessary hours to cover houses. As such, it falls to a handful of people who end up doing most of the extra coverage needed.” (FLS)

Changing Responsibilities. Staff experienced changes in their expectations, job duties, positions, programs, and locations when they were short staffed. Examples of their experiences include:

“We have been given more job duties and higher expectations than before.” (DSP)
“Pressure to work in residential services, working outside of primary job title.” (FLS)
“We’re consistently being called asking us to work at different job sites where we have no experience because they’re desperate for staff.” (DSP)
“I am also not able to do my full job because I am split between multiple locations: working day hab, residential and community hab.” (DSP)
“The staffing issues have caused other homes to need coverage causing staff to work in different locations that they aren't familiar with causing stress on staff and people.” (DSP)
“Many staff have had to come in early to pick up transportation responsibilities due to vacant positions, and the staff who provide supervision to the individuals we support are being assigned to work with larger groups of clients to support because there is not enough staff to provide smaller group supervision. Administrative staff have had to step up to provide transportation and supervision, as well as carry out DSP work not typically assigned to them to be able to support the number of individuals attending the day program each day.” (FLS)

Increased Workload. Staff reported that they felt “spread thin” when they had to absorb the work of others and did not feel they could get everything done.

“Staff vacancies add additional workload for all of us.” (DSP)
“Stress from all the extra responsibilities.” (FLS)
“Added pressure to absorb their work.” (DSP)
“It upsets the residents to have so much turnover so they have more behaviors which makes my job harder.” (DSP)
“We have less staff and have had to take on multiple jobs to open back up (DSPs are drivers and job coaches at day programs).” (FLS)

Pay and Workload Disparity. Staff experienced a greater disparity between their increased workload and what they were getting paid. Expressed examples include:

“We do the work of more then one person for the same amount of pay.” (DSP)
“I feel like less and less qualified people are being hired to fill positions which in turn just puts more and more pressure on the experienced employees. The kicker is they all get paid the same.” (DSP)
“The start pay has been increased leaving long term employees at little or no increase in pay above new hires.” (DSP)
“Staff and myself have also done an increase in training sessions due to the amount of staff coming and going leading to more hours that I work over 40 that I don't get paid for due to being a salary employee.” (FLS)
“I am an employment counselor with two bachelors degrees and 6 plus years of direct work experience and I regularly help individuals obtain employment or promotions with high school diplomas earn more money than I do.” (DSP)
“Valued employees are being overworked and underpaid. New employees coming in are being paid at a higher rate but not wanting to do the work so they don’t last. Again puts more work on employees and supervisors to provide support, with no increase in pay.” (FLS)

Stress and Burnout. Staff experienced a great deal of stress and burnout due to the increase in workload, pressure to cover shifts, changing job responsibilities, and not feeling valued. Examples of these expressions include:

“Staff are quitting or retiring due to the stress and overtime.” (FLS)
“Additional stress and burnout for staff due to having to work longer shifts unexpectedly.” (DSP)
“We are worn out, stressed and don’t see an end in sight.” (DSP)
“The pressure of staff turn over has increase the amount I have had to help as well as lead to mental health concerns due to the pressure. Other staff have experienced burnout and changed their professions or left the company due to the mounted pressure that has been put on them.” (FLS)
“Burnout due to mental exhaustion and being overworked due to short staff.” (DSP)
“Burnout due to working more hours and added responsibilities from working what is essentially two full time jobs.” (FLS)

Lack of Supervision, Support, and Training. Since FLSs were needed to cover shifts, they were less (or not) available to supervise, support, and provide training to new and current DSPs. Examples of these situations include:

“I have had 3 different supervisors in less than a year and it is hard to continue providing the level of care I know I should be without very much support.” (DSP)
“We are so short staffed that managers like myself have to provide so much additional direct care that I can't be a very good supervisor to my staff.” (FLS)
“The supervision is less in the workplace because they are busy working on filling a schedule. Responsibilities normally not ours to deal with have been placed on us.” (DSP)
“As the program manager I am as well as the site supervisors, conducting more direct care. This takes away from our jobs, including new staff training, progress reports, support to client and staff additional to the staff normally scheduled, funding and treatment plans being turned in late because the client needs come first. This is due to the lack of staff, lack of applicants, and lack of qualified personnel.” (FLS)
“Extra and additional time spent in the 'off-boarding' of employees who leave and the 'on-boarding' and training involved for new staff.” (FLS)
“Mental stress of new staff not being trained, management relying on staff to train them.” (FLS)

New staff are Unqualified. Many new staff were unqualified, unskilled, and did not show that they cared. Though staff were urgently needed, there was a lack of qualified candidates and little time for training once they were hired.

“We as an agency are hiring staff that we typically would not. They are in need of support and training, which we do not have the time to dedicate to them. This means the client lacks the support they need due to uneducated or unmotivated staff.” (FLS)
“There is also a problem with finding quality people to work. Since this job does not require a degree or prior knowledge of people with disabilities it seems that any warm body off the street who is at least 18 years of age with a driver’s license and can pass a background check is hired.” (DSP)
“The administration is reluctant to terminate or dismiss staff for lackluster job performance due to the challenges of inadequate staffing to provide supervision, so the quality of care is lacking due to administration not being able to take action for poor job performance.” (FLS)
“Psychological stress of staff on duty that don’t know their jobs. Nothing being done about lazy rude new employees in fear that they’ll quit.” (FLS)
“It also lowers morale when people who do work very hard work with coworkers that do not care. This puts more responsibility on those who do really care and frustrations with management when bad work ethic is not dealt with.” (DSP)
“Our employer no longer seems to reprimand for repeatable offenses to company policy such as showing up late, insubordination, no show no calls, poor work ethic, and so on. There is no accountability and responsibility anymore because our employer is too afraid to lose staff.” (DSP)

Long-term Staff Left. Long-term staff left because they were stressed, overworked, and irritated about the unfair pay and workload among staff. Examples of these situations include:

“The more staff we lose, the more staff who quit. Every person who quits adds that much more pressure onto the remaining staff.” (DSP)
“Vacancies has created major burnout to the seasoned staff who has been working for many many years.” (DSP)
“Staff leave due to better opportunities or stress, and are hastily replaced (or not) with less qualified and experienced persons. This puts more stress on stable and long-time staff, either in the form of pressure to pick up extra hours, or to work harder because of less qualified people.” (DSP)
“Working short staffed is stressful on staff and we have lost staff members due to this.” (FLS)
“This has caused numerous staff to resign in the agency, as they have felt underappreciated for a long period of time and overworked with little compensation.” (FLS)
“All the seasoned and good staff are leaving.” (DSP)

What are one or two major ways that staff turnover and vacancies at your primary employer (if any) have affected the people you support?

Nine percent of respondents indicated that the people they supported were not affected by turnover and vacancies (e.g., not affected, none, no, no change). Others indicated that they worked alone, such as in a family home, their organization did not have high turnover and vacancy rates, or the needs of the people they supported continued to be met by staff who covered shifts. The effects of turnover and vacancies on people supported include:

Fewer Services and Less Support. People supported had a “loss of services or limited services” when programs were closed or had limited capacity, their housing was changed or lost, and they had less one-on-one time with staff. Stories shared are illustrated by:

“Houses and day programs have closed due to staffing shortage. Many people are having to wait and average of 18 months before being able to intake into day programs, etc.” (DSP)
“We are unable to have all program participants at program some days due to lack of staff.” (DSP)
“We have had to altogether drop clients and leave them without services because we just can’t staff them.” (DSP)
“Client goes without services for longer periods.” (DSP)
“At Respite we at times have to drop capacity of who we can serve based on staffing. This is a huge impact to parents and families who rely on our services.” (FLS)
“We have people moving back in with parents due to homes not having staffing.” (FLS)
“We have been forced to lower staff ratios and consolidate houses.” (FLS)

Limited Community Access. People supported had less access to and involvement in the community as illustrated by:

“It has negatively affected community involvement.” (FLS)
“Not being able to access the community due to staff shortages.” (FLS)
“Less opportunity to get out into the community.” (DSP)
“They don't get to go on as many outings as they were because there are not enough staff to cover the house if one staff (or 2 if that is the supervision level) leave to take someone on an outing.” (Other)
“Staff not able to transport to various events/activities and provide supervision.” (DSP)
“We are unable to take our participants on community outings due to lack of staff.” (DSP)

Limited Activities. People supported missed activities, had fewer social interactions, and faced more barriers to work. Examples include:

“They are often delayed or denied activities due to not enough staff.” (DSP)
“Suddenly losing a job coach with no notice.” (DSP)
“Missing out on the social part of life.” (DSP)
“They are often bored from lack of activities.” (DSP)
“Sometimes they don't get to do as many activities as they used to because staff are still caring for the personal needs of others.” (DSP)
“Inability to provide group activities to support community/social well being.” (DSP)

Disrupted Routines. People supported continually had their schedules and routines disrupted as illustrated by these comments:

“Consistency is very important to them. Staffing and schedule changes don't go over well.” (DSP)
“Their daily routines are continuously changing which can cause them anxiety.” (DSP)
“Fill-in staff do not know them and their routines in their home.” (DSP)
“There is a lot of gaps in the daily routine due to new or out of house staff covering.” (DSP)
“The people supported have had their routines interrupted. They love going places and doing things, but with staff shortages, so many things have been canceled.” (DSP)
“They also get upset with changes in routine which naturally happens when new employees are hired.” (DSP)
“The people I support have more anxiety - they do not always have consistency in their schedules which can cause issues for them.” (FLS)

Inconsistency of Staff. People supported were greatly impacted by continually having new staff, which led to increased anxiety, a lack of trust, and not being comfortable with new staff. This is described as:

“Inconsistency of care. They are concerned about who will be working shifts. They do not know some of the staff coming into their homes and it appears to be concerning to them.” (FLS)
“They have higher anxiety because they are unsure of who their staff will be from day to day.” (DSP)
“The clients finally get to know and become comfortable with staff and they think there going to stay for awhile and they end up leaving. Which in the end they don't understand why and think they have done something wrong or have caused them to leave.” (DSP)
“If someone leaves they tend to wonder why and if it was there fault.” (DSP)
“It hurts people's feelings when staff leave.” (FLS)
“It is hard for them to adjust to new staff and grieve losing former staff.” (DSP)
“They're having trouble trusting again. They feel like it's their fault new staff aren't staying.” (DSP)

Reduced Quality of Support. People supported experienced a decline in the quality of care and support they received from staff.

“Quality of care has diminished significantly. The staff are making mistakes because they are being mandated for double (or triple shifts) constantly.” (FLS)
“They are not always able to get the help or support they want or need in a timely way. Unqualified staffing making frequent errors when supporting people.” (FLS)
“We have been exhausted which means the care is not as good as it should be.” (DSP)
“Unintentional neglect due to lack of staff or missed communication.” (DSP)
“Not having properly trained staff to provide quality care.” (FLS)
“The individuals are receiving less individualized supports.” (FLS)
“The people we support don’t have as much one on one attention.” (DSP)

Mental Health. People supported experienced a significant amount of anxiety, stress, and other emotions due to staff shortages. Respondents described this by:

“The people I support are more anxious. They don’t know who’s coming or going and are worried their needs won’t be met.” (DSP)
“It causes stress and anxiety as it is a change to their daily routine and for some it is very hard to cope.” (DSP)
“It gives them anxiety of not knowing who they’ll be with.” (DSP)
“The people I support are in a constant state of anxiety not knowing who is coming in, and having no familiar routine due to constant movement of staff.” (DSP)
“They feel powerless with the situation.” (DSP)
“They are very sad and withdrawn.” (DSP)
“Fear and anxiety.” (FLS)

Increase in Behaviors. People supported had an increase in “behaviors” due to their situation. Examples include:

“Increased undesirable behaviors due to stress caused by uncertainty and inconsistencies.” (DSP)
“There is less consistency with behavior plans.” (DSP)
“Higher number of behaviors due to staff changes and unfamiliar staff not knowing all the behavior strategies.” (DSP)
“Having staff that aren't able to monitor changes in behavior because they haven't known the individual long enough.” (DSP)
“Behaviors happen when staff is tired and unable to catch early cues that lead to behaviors.” (DSP)
“More outbursts with each other because they have no outlets and are with each other constantly.” (DSP)
“Individuals with significant behavioral issues have seen increases in target behaviors due to spending time with staff not experienced in how to respond to their issues.” (DSP)

Health and Safety. The health and safety of people supported were in the hands of overworked, exhausted, and potentially untrained staff. Examples reported include:

“Health and safety concerns because of lack of trained staff.” (DSP)
“Individuals have received wrong medications and incorrect methodology in administering medications. Individuals in care are receiving substandard meals.” (DSP)
“Serious injury, missing of extremely important medical visits, ability to provide adequate meals.” (DSP)
“In residential homes their medical complaints are often overlooked - headaches, arthritis, things that aren't dramatic or things that are slowly changing.” (DSP)
“They have to wait longer for help in the restroom or with urinary incidents. They sometimes are missing key things, like…somebody forgot to give them their call bell.” (DSP)
“Missing appointments, not getting medication on time because no was trained to give it because staff just started and had to finish medication training.” (FLS)

Quality of Life. People supported experienced a decline in their quality of life as illustrated by:

“The people we support suffer because they are not getting the full engagement and meaningful activities that are truly essential to their growth and life fulfillment.” (FLS)
“I think it has made them grown accustomed to a higher level of isolation which we are finding difficult to break from.” (DSP)
“Skills are declining, they are more apathetic.” (FLS)
“The purpose is to learn to be more independent…they are not improving. they are digressing instead.” (DSP)
“Clients get less choice to do what they want to do.” (DSP)

Results - Survey Respondent Perspectives on Work Status

There were three questions about work status that allowed respondents to respond in an open-ended format:

At this point in the pandemic, what is one most significant positive change in your work life?
At this point in the pandemic, what is one most significant challenge in your work life?
At this point in the pandemic, what is the most significant added pressure you feel (if any) with your job?

At this point in the pandemic, what is one most significant positive change in your work life?

While the single most common answer was that there were no positive changes in their work lives, there were many respondents who did find good including positive changes in their work environment, increased pay, life beginning to return to normal, services and supports improving, and receiving personal benefits.

Positive Changes in Work Environment. Positive changes in respondents work environments at this point in the pandemic included better relationships with coworkers, having more flexibility in their work schedules, having more work/life balance, experiencing an increased attention to workplace safety, being able to stay home when sick, and having a change in job status. Illustrations include:

“Staff all getting along better, and communication has improved” (DSP)
“Being able to complete office type tasks from home, which offers more flexibility and efficiency.” (DSP)
“Ability to live my life/see my family when not working and not feel as guilty about it.” (FLS)
“Work is more understanding when you need time off.” (DSP)
“Always having PPE to protect ourselves from illnesses.” (DSP)
“I think before the pandemic managers expected you to come to work even when you were sick. They thought take a pill and come anyway. Now most organizations in our industry have adopted the attitude if you are sick, stay home, don't infect people, you don't know what you may have, so I think that is a positive improvement” (FLS)

Increased Pay. Respondents reported that they were able to make more money during the pandemic. This included the ability to work more hours and getting bonuses and/or increased wages. However, some noted that the increased wages were ending. Experiences reported include:

“I’ve changed to a job that pays more than $10 /hour.” (DSP)
“Better paychecks, but also have been working the extra hours for the pay” (Other)
“Employees at my agency are receiving large bonuses” (DSP)
“Pay increase. Closer to getting paid what we should for the work we do” (DSP)
“Pay raise. Feel more appreciated at my job” (DSP)

Things are Returning to Normal. Respondents noted aspects of a return to normal as they were able to do community activities and reinstate community employment, programs were re-opening and supports offered in person again, and having some of the COVID-19 restrictions lifted. These are identified as follows:

“Seeing the people we work with have more fulfillment as they are able to get out, socialize and learn to grow into as much independence as they are able to do so” (DSP)
“We are supporting people as normal in their essential home & community routines (jobs, volunteerism, gyms, vacations, concerts, etc.)” (DSP)
“The individuals day programs have started opening, and I see some happiness in them.” (FLS)
“Being able to provide supports face to face with the people that I work with” (DSP)
“I think I can speak for all of us here at our day program, finally being able to come to work with no mask. It’s almost precovid again” (DSP)

Improved Supports and Services. Respondents saw positive change to the individuals to whom they provided supports. These included increased creativity and flexibility in providing supports, the benefits of telehealth, and remote supports, such as:

“We are more careful, we care for each other and we learned how to use technology as alternative ways to do things” (DSP)
“We were able to give more room for individuals to choose how their day goes. It used to be fast paced, very structured and full of activities. Which sounds great, but sometimes people don't want to be on the go 24hrs a day all day. We are honoring that some people feel it's just nice to slow down” (FLS)
“Creativity! Finding new ways to do old things. Finding ways to get over obstacles and barriers” (FLS)
“Gained a better perspective on engaging the people I support in and around the neighborhood they live in.” (DSP)
“State rules being relaxed due to flexibility needed during COVID. State reps realizing they need to be more flexible and then keep it that way, even after the worst of the pandemic has passed.” (FLS)

Personal Benefits. Positive changes that occurred during the pandemic included personal benefits such as meeting a personal goal, finding gratitude, remembering what is important, and finding value and meaning in their work. Examples include:

“Graduating college” (DSP)
“Lost weight” (FLS)
“Grateful to still have a job” (FLS)
“Grateful that everyone survived. (DSP)
“It has made time with family even more special” (DSP)
“It has made me appreciate life a little more, and stop and realize how truly lucky I am to have my life the way it is, after losing friends, family, and my fiancé having covid-19, and not knowing if he would be coming home to me” (DSP)
“I have a lot more understanding of the importance of my position, and of this field in general. Without direct care support staff, people who are mentally and physically handicapped could not live their lives to the fullest, as they deserve. I have more of an appreciation for the clients that I help support, because I've seen how much they need people like me and my coworkers, and trust us to their full capacity to provide them with a life worth living” (FLS)

At this point in the pandemic, what is one most significant challenge in your work life?

There were many significant challenges that respondents were experiencing in their work life. They included COVID-19 related challenges, COVID-19 precautions or restrictions, COVID-19 related worries, staffing shortages, work environment challenges, supports and services to the individuals supported, and personal challenges. Some respondents indicated that they had no challenges in their work life.

COVID-19 Related Challenges. The most frequently noted challenges were concerns about getting COVID-19 because of personal health issues or financial concerns because providers were no longer paying for quarantine time off. Other concerns were related to passing the virus on to others. The added burden of following COVID-19 restrictions was also a challenge, particularly because they changed frequently, and community adherence was inconsistent.

“Communicating with adults with autism while wearing a mask constantly while indoors while serving clients. Masks make it much harder to communicate and to read non-verbal cues which make it harder to support the people I support” (DSP)
“Back and forth with covid restrictions. Company lifts restrictions too soon allowing employees to get sick and multiple people out at once due to being infected, then staffing shortage causes undue stress to employees not infected” (DSP)
“Wearing PPE all the time, extra cleaning, health checks on persons served prior to in person shifts, recording own health screening prior to in person shifts” (DSP)
“When an individual served gets an exposure and if they are not vaccinated they have to stay home from work for 10 days. Regardless if they are well and test negative. Very hard on certain individuals mental health and finances” (FLS)
“People are fatigued by COVID precautions and don’t follow them as closely” (DSP)

COVID-19 Related Worries. There were also significant COVID-19 related worries about getting COVID-19 or infecting others, losing wages due to sickness, and fear of losing people. Specific examples include:

“COVID positive or family COVID positive you don't get paid when on quarantine” (CNA)
“Being scared of losing one of the people I support due to COVID. Also getting COVID again and taking it to my home or my mom (who is sick) and her taking it to her boss (who is elderly and sick)” (DSP)
“Exposure to COVID at work, specifically having to work closely with an individual who has tested positive, and from that risking exposing my family” (DSP)
“The vigilance and fear of exposing a vulnerable adult to COVID; every day felt like hard choices between risk and isolation” (DSP)
“To be informed by my supervisor about COVID exposures and or positive tests. I think there should be better communication from supervisors and assistance for getting personally tested as needed” (DSP)

Staffing Shortage Related Challenges. Staff shortages were seen as a significant work challenge. The challenges stemmed from the difficulties in hiring, finding coverage for open shifts, needing to work single staffed, and the increased hours they were expected to work to ensure that all shifts were covered.

“Being understaffed and having to work extra to make sure that minimums are being met for the safety of the individuals is an everyday challenge” (DSP)
“Finding enough people willing to work so that we can have days off without them being for emergencies. The only time I've had real time off, I had covid, I had a mental breakdown from the stress, my child was in the hospital and I had a car accident” (FLS)
“Currently being the only job coach, makes me feel guilty if I call out” (DSP)
“Working alone” (DSP)
“When at work you don’t know if you can plan something after because you never know who is coming to relieve you or you’re stuck at work” (DSP)
“The constant mandating into the next shift and constant overtime is a big stressor. I can't make plans with my family because it is too unpredictable at work and I lose sleep over it” (DSP)
“The lack of ability to recruit, hire and retain staff. Due to a lack of staff services are limited, Staff are stress, overwhelmed and looking for new employment opportunities.” (FLS)

Work Environment Related Challenges. Respondents reported other work-related challenges. Some of the challenges stemmed from the COVID-19 pandemic and some from the staffing shortage, but they are broader concerns. These include lack of support from supervisors and administration, challenges with co-workers, poor communication, and expectations regarding workload, for example:

“Added responsibilities due to other disciplines working remotely, more of a disconnect between management and the direct care workers, a lot of extra trainings and a lot more computer requirements that take the staff away from doing the care for the individuals.” (FLS)
“I am responsible for the compliance program, but with the requirement to work in the group homes during/in exchange for my regular working hours, I have found it extremely difficult to get all of my work completed.” (FLS)
“My job description has changed and added overtime and increased job duties. We work short everywhere and everyone is tired and hanging on by a thread.” (DSP)
“Isolation - little communication and visibility from management as many are "working" from home.” (DSP)
“Administrators lack understanding of the work situation and show little compassion. They try to ignore the staffing crisis.” (FLS)
“I think management doesn't do enough to show they appreciate their workers” (DSP)
“Ever changing guidance - State's unwillingness to provide clear recommendations” (FLS)

Supports and Services and Individuals Supports. Respondents identified challenges related to the individuals they support and they supports and services they provided. Key areas of concern included the effects of the COVID-19 pandemic and staff shortage on the mental health of the people they supported, the negative impacts on the quality of supports being provided, and the challenges with returning to a normal routine.

“Managing the mental health of those I support and being heard by the professionals that are supposed to help fix it.” (DSP)
“The individuals are not back on their normal routine so they struggle with their moods and keeping a regular schedule, they get bored or argue with each other more.” (DSP)
“Guiding both people supported and DSPs through the trauma - anxiety, depression, burnout - of the pandemic.” (FLS)
“Being able to give enough time to each person” (DSP)
“Finding replacement services that are no longer available since Covid” (DSP)
“It is hard to see unqualified and incapable staff intentionally or unintentionally providing bad care and knowing they are staff we would have never hired a few years ago” (FLS)
“Most of our individuals worked prior to the pandemic, but when the pandemic hit, and businesses started closing, our individuals were left without jobs, and our staff as well. Still, today, we are trying to find our individuals jobs that did not get their job back as people started going back to work. I think this is the biggest challenge for us in supported employment. Businesses who thought maybe their individual wasn't doing a great job, took this as an opportunity to not call those individuals back when they called their employees back to work” (FLS)

Personal Challenges. Respondents experienced personal challenges related to finances, childcare, maintaining work/life balance, and managing their own worries, anxieties and mental health challenges stemming from the pandemic and the staffing crisis. Stories provided include:

“Facing trying to meet the increased gas prices, the increased food prices, the increased heat/electric/propane etc. etc. on what will soon be reduced wages” (DSP)
“Not making enough money to pay all my families bills. If i don't work a minimum of 25 hours of overtime, i cant pay for groceries, rent, utilities AND medical things that we need” (FLS)
“Just feeling so stressed out when we are low on staff and my company wanting me to work even though I can’t because I can’t find child care beyond my family and they all work too so that has been the most challenging thing” (DSP)
“Everything has changed. new management, everyone is on edge, 2 years at home, and people are older, out of shape, and out of the habit of going out into the community, worried when it will all be taken away again. What's the point?” (DSP)
“Fear and safety of myself and others. The uncertainty to ensure that I am safe on a day to day basis to work and earn a living to support myself and family. Life with COVID has been very difficult. Life has become very stressful and the fear and anxiety to do things that I used to be able to do on a daily/weekly basis has gotten very hard for me to do. It is almost like PTSD and my life has become very regimented and almost robotic like. I wake up, get ready for work, go to work, go home have dinner, rinse and repeat. When I am out and about on my own free/spare time its like "exposure therapy" little by little trying to return to some form of normalcy. But what is normal anymore, we will be living with the fear and positivity rates of COVID for the rest of our life time. I want to be able to live my life like I used to without fear and uncertainty. Due to this pandemic I can honestly say my life has been worse and anxiety, fear and depression have increased” (FLS)
“I feel like I have no social life. I try to meet new people but often it’s hard when I tell them that I often work overnights for up to 6 nights a week and it’s hard to plan anything fun to do outside work” (DSP)

At this point in the pandemic, what is one most significant added pressure you feel (if any) with your job?”

There were many significant added pressures felt by respondents at their jobs. These included issues related to the workforce crisis, COVID-19 related pressures, and dealing with the effects of the pandemic on themselves and the people they support. Some reported that they had no additional pressures due to the pandemic.

Workforce Crisis. The staffing shortage and its effects were the most commonly reported sources of pressure by respondents. The staffing shortage has meant increased workloads, added duties, and has had negative effects on the people being supported due to the lack of staff. Hiring and training new staff was a related source of pressure, as was the lower quality of new staff. Many noted that the low wages are one cause of the staffing crisis. Specific experiences reported include:

“I feel pressure every single day, from how many staff will be calling out/how many staff will be working. Every time my phone may ring or a text message comes through it has caused me to get stressed even if the phone call or text has no coloration with work. Definitely feel spats of PTSD, increased anxiety physical changes (gain weight, gray hair etc.) and I'm not even in my 40s yet.” (FLS)
“Being there to fill shifts when there isn't anyone to do so. We work for people providing services, its not like we can slap a sign on the residence saying "closed" due to lack of employees” (CNA)
“I have a hard time even coming to work if I have an appointment the next day because you never know when or if your leaving. Makes our lives harder to live” (DSP)
“The dynamic of being a hiring manager - having open positions creates stress but at the same time I have anxiety around interviewing candidates, making offers, and beginning training due to so many candidates ghosting. I have to force myself to present a welcoming attitude when talking with candidates and with new staff during the training process because I now expect all of them to drop out” (FLS)
“Trying to motivate and keep staff going. We can't afford to have even mediocre staff leave” (FLS)
“Minimum wage is catching up to how much we make here, so we lose people that go to work at other places” (FLS)
“I have no Home life, I'm more depressed than ever before. I feel like I can't accomplish anything at work or Home. No balance!!!!” (Other)

COVID-19 Related Pressures. These pressures stemmed from the COVID-19 restrictions or protocols that were frequently changing and hard to enforce when the rest of the community no longer followed them. The other pressure respondents felt was related to keeping participants and themselves healthy. Respondents also expressed concerns about getting sick because they are no longer receiving pay for COVID-19 related quarantines or illness. DSPs also report that they are now being expected to work if exposed or become ill.

“Balancing the different attitudes of COVID concerns from staff and clients - the ever changing "am I on quarantine? ' or " do I quarantine?" or, "should we be implementing more strict standards of prevention again." Feeling like I may be inadvertently passing illness everywhere I go due to the mixed protection messages I get” (FLS)
“Mixed messages on what we are and are not supposed to be doing along with frequent changes in policy making it hard to keep tract of what we are supposed to be doing” (Other)
“Difficult explaining that Covid still exists to my clients especially when their family and really the community is going on like it never happened. Its hard trying to explain that we still need to wear a mask and distance from strangers when thats not what they are doing in their normal day to day” (DSP)
“If you get covid you no longer get paid for time off if you have a cough have to be tested and off 3 days til results are back people can't afford that being much more careful about the way I live my life and activities I participate in because I can't afford to be off work if I am sick and receive no pay” (DSP)
“Knowing that despite being vaccinated any of us have already had COVID and if we didn’t get it yet it will probably happen and then we could spread it to our families and/or the individuals we support” (DSP)
“If I become exposed to the COVID-19 virus, I am unable to quarantine and have to continue going out in the field” (DSP)

Effects on Respondents. Respondents noted how the pressures they are experiencing at work are affecting them. They are facing pressures related to finances, their own mental health (worry, anxiety, burnout), fatigue, and feeling pressure or obligation to pick up additional hours. Staff report a lack of support and appreciation from supervisors and management for their efforts.

“Prices in the world have increased a lot and it becomes a struggle to survive and provide for a family with low amount of hourly pay and being on the frontline” (FLS)
“Facing trying to meet the increased gas prices, the increased food prices, the increased heat/electric/propane etc. etc. on what will soon be reduced wage” (DSP)
“To remain diligent when exhausted” (DSP)
“Feeling like you have to take care of everything by yourself because there is no help from supervisors and the executives” (DSP)
“Pressure and guilt to pick up shifts” (DSP)
“I'm not taking care of myself well. Tired and burned out and put myself last is taking its toll on my spirits being as caregiver. It's why others leave to find something more financially lucrative” (DSP)
“I feel stress. I feel that I am not performing to expectation. I feel like my supervisor is disappointed in me. I feel like I am failing at my job” (FLS)
“Trying to remain professional and optimistic with clients when every single day is a struggle at work” (DSP)

Effects on People Supported. Respondents reported pressures related to provide supports and the negative effects of the staff shortage and COVID restrictions on the people they support.

“Not enough time to support everyone” (DSP)
“Making sure the individuals stay safe without depriving them of social and community involvement and to avoid feelings of isolation and loneliness” (DSP)
“Being able to find the people I support jobs in the community” (DSP)
“New staff are coming in to stressful environments. The people we support have to readjust to being ABLE to go out in to the community if they want. A lot have quit asking to go because for a while we couldnt go out, no one could. So when staff come in and they are excited to do community involvement activities; like shopping, or the park or library, the people we support are not. They are triggered into behaviors that new staff dont know how to handle it because only time can help you learn that. New staff dont stay because the behaviors are at a high right now. They have either never done this job before and thought it would be easy money with zero skills needed for entry level. Or they have done this job and dont want to work the hard houses anymore. So they go make more money for Amazon or where ever else." (DSP)
“Trying to bring quality of life back to our clients. With day program no longer. Clients have lost their community of friends. They have regressed and depressed. Families are heart broken over the changes they have seen in their family members. We are working to correct this but it is hard to replace 8 hours they worked on skills with their friends (Other clients) of many many years. This is a big deal as they were flourishing. This has definitely set them back as well as their families. Think about this happening to you on a grand scale. It would be devastating to us” (DSP)
“Limiting touch: high fives, hugs, fist bumps, etc. as well as trying to encourage social distancing within the house. The folks living here have expressed things such as “you don’t like me anymore?” “I’m sorry (assuming they did something wrong because we encourage them not to hug us)” (DSP)

Key Reflections on COVID-19 and DSP Experiences Over Time

Respondents provided critical supports for people with IDD throughout the COVID-19 pandemic. The following sections summarize findings from the 24-month follow-up survey and put them in context over time.

Respondent Tenure

Similar to the initial survey (59%), the 6-month follow-up survey (62%), and the 12-month follow up survey (66%), a large majority of the 24-month follow-up respondents (85%) reported they had worked in direct support at their primary employer for 36+ months, while only 2% had worked at their primary employer for less than 6 months. This is high compared to organizations participating in National Core Indicators Staff Stability Survey, reporting in 2020 that only 39% of their DSP workforce had been employed for 36+ months and 15% for 6 months or less (National Core Indicators, 2022a). The 24-month follow-up survey respondents bring a valuable perspective related to their expertise in the field and their commitment to direct support given their tenure.

Respondent Demographics

The 24-month follow-up survey collected information about respondent demographics. The average age of the sample was 47 years, and 82% identified as women (including transgender women). This is somewhat different from the national average of 41 years and 86% female reflected in a national sample of home care workers across service sectors (PHI, 2021). In the 24-month survey, 76% of respondents identified as White, 13% as Black/African American, 2% as American Indian/Native American, 2% as Asian, 2% as another race not listed, and 5% as two or more races. Additionally, 7% indicated they had a Hispanic, Latino, or Spanish heritage, and 10% were first- or second-generation immigrants to the U.S. The initial survey did not gather this information, and while there are slightly more respondents identifying as White in the 24-month follow-up survey, the numbers in general are comparable with those in the 6- and 12-month follow-up surveys. These demographics likely do not reflect the diversity of the direct support workforce as in other studies that included the IDD sector where 49% of the workforce is identified as people of color (National Core Indicators, 2022a).

Wages are also an important finding. In this study the average pre-pandemic wage for DSPs was $15.31 per hour, and the average current wage was $16.58 per hour. This sample of survey respondents had a much longer tenure than typical DSPs with 85% in their positions for 36 or more months. This likely explains a higher hourly rate than in other studies (National Core Indicators, 2022a). Regardless, a family of three cannot live and meet expenses on this wage. Additionally, 70% of respondents reported that they have education beyond high school, indicating that these are not entry-level workers.

Working Many Hours per Week

Nearly a quarter (22%) of respondents worked six or seven days a week, and 10% reported working more than 40 additional hours per week due to the COVID-19 pandemic. On top of that, 59% indicated feeling pressure to work more hours or days in a week. For decades, the need to work overtime or additional jobs within the direct support workforce has been documented (Hewitt et al., 2019; Test et al., 2003). It is important to note that more Black/African American participants reported working 16 or more additional hours per week compared to other race groups. Although there have been many changes in the workforce since the pandemic started, 60% of respondents are still reporting working more hours per week and 68% had additional responsibilities or different roles. The expectation for workforce staff to continually work additional hours, modify their work life and hours, and add new roles and responsibilities does not promote wellness and health and only intensifies burnout and ongoing retention issues within this workforce. Systems-level solutions that build career preparation programs, pay wages that align with the skills required of the job, and create workplace cultures that attend to the symptoms of burnout, stress, anxiety, depression, trauma, and isolation are critical.

“Boundaries between home and work life. If I’m complaining about anything, it’s that when I say no to working extra hours I’m ignored. I feel like saying no should be the end of the discussion. The pandemic has not been good for me and I’ve been in a depression ever since. Job burnout is real and it’s hard to get over. If I want my days off to relax and get my mind right, I shouldn’t have to explain myself.” (DSP)

Work Life is Still Difficult

Nearly half of respondents (47%) indicated that their work life is worse or much worse, which is better than the 6-month survey of 54% but worse than the 12-month survey (35%). Twenty percent said that it is better or much better. Nearly all respondents (97%) self-identified as essential workers, and 53% reported receiving salary augmentations as an essential worker, which is higher than the results of the earlier surveys where 24%, 30%, and 27%, respectively, reported receiving salary augmentations. Eighty-four percent of respondents indicated some health and wellness issues resulting from the COVID-19 pandemic. These issues included anxiety, depression, other mental health issues, physical and/or emotional burnout, sleep issues, physical health complications, loss of a loved one, PTSD, suicidal ideation, and others. It is important to recognize and acknowledge these stressors and to consider their effect on the workforce. DSPs may benefit from access to support and counseling, as has been recommended for direct support workers in other sectors (Clarke et al., 2020).

“I only took 2 months off during the pandemic. The rest of the time, I worked as an essential worker full time. The emotional toll has affected me immensely. I am always tired and on the verge of burnout. There has been no relief, despite things returning to a "new normal". I feel stuck, depressed, and unappreciated. The emotional exhaustion I feel has permeated all aspects of my life” (DSP)

Staffing Challenges

Respondents reported that staffing challenges continued to be a significant problem for their organization. They stated coworkers were currently not working due to family reasons (11%), fear of becoming infected with COVID-19 (9%), childcare issues (11%), needing to quarantine due to COVID-19 exposure (14%), testing positive for COVID-19 (20%), fear of infecting others (5%), and other reasons (5%). Except for testing positive for COVID-19, these percentages are lower than in previous surveys. Intentional programs and strategies must be developed, implemented, and used to promote recruitment and retention, as high turnover and vacancies have always been an issue in this workforce. A worsening of this due to COVID-19 makes what was already a serious problem even more dire. That said, 72% of respondents indicated new staff had been hired in their organization in the past six months, which is promising.

“Constant cycle of calling, interviewing, hiring, training staff and then for them to only work a few weeks or a few months and then back to hiring... or we hire 3 and in a few weeks 3 that have been working for several months leave, so our staff ratio is never changing even though we have constant orientation classes and constantly hiring people.” (FLS)

COVID-19 Diagnosis

Respondents were asked about having a diagnosis of COVID-19. Over half (52%) said they had been diagnosed with COVID-19, which is higher than in the 12-month survey (19%). The number of respondents who had not supported people diagnosed with COVID-19 decreased significantly since the previous surveys, in which 91% (initial survey), 59% (6-month follow-up survey), and 44% (12-month follow-up survey) of respondents had not supported anyone diagnosed with COVID-19. At the time of the 24-month follow-up survey, 21% of respondents had supported 1-2 people diagnosed with COVID-19, 24% supported 3-5 people, 16% supported 6-10 people, and 22% supported 11 or more people. Only 17% of respondents had not supported someone diagnosed with COVID-19. These results show clearly that respondents take significant risks in their roles of supporting people with IDD. Compared to others in the population, people with IDD are at great risk of getting COVID-19, and many die from it (Gleason et al., 2021). This exemplifies why the people who provide support need to be identified and paid as essential workers as long as the pandemic continues. 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.

“Being much more careful about the way I live my life and activities I participate in because I can't afford to be off work if I am sick and receive no pay.” (DSP)

Safety Measures and PPE

Nearly all (95%) respondents reported some level of safety measures established by their employers. Overall, there was greater adherence to safety measures at the 24-month survey, in part because of clear guidelines from states and the Centers for Disease Control and Prevention (2021). A notable change in safety measures reported by respondents included access to COVID-19 testing (10% in the initial survey, 36% in the 6-month follow-up survey, 43% in the 12-month follow-up survey, and 55% in the 24-month follow-up survey). While personal protective equipment (PPE) was in short supply at the beginning of the pandemic, two and a half years later 90% of respondents have enough PPE; however, 15% still have to pay for it out of pocket.

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 July 2022, 32.8% 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.

Impact of Technology

Respondents reported they people they support were using many types of technology to help with everyday living during the pandemic. These included an internet-enabled device for social media, videoconferencing, an internet-enabled device for transportation and GPS, medication dispensing, remote home monitoring, and other devices. Of the device types listed, 48% or more of respondents felt very confident using them. A third of respondents indicated their employer provides a lot of support to ensure staff understand how to use the technologies. Comparing the people they support and themselves on their use of technology now with the beginning of the pandemic, over half (52%) reported the people they support use technology a lot or somewhat more, and 59% indicate they themselves were using technology a lot or somewhat more. With respect to the overall impact of the use of technology, 50% indicated a somewhat or very positive impact for people supported and 54% reported a somewhat or very positive impact for themselves.

Disproportional Impact of COVID-19 for People from Diverse Racial and Ethnic Backgrounds

There were significant differences between race groups and the number of additional hours worked weekly due to COVID-19. A higher percentage of respondents identifying as White and Other worked no additional hours compared to Black/African Americans. Respondents identifying as White and Other also had a higher percentage of working 1-15 additional hours compared to Black/African Americans. Black/African American respondents had a higher percentage of working 16-30 additional hours weekly compared to White and Other respondents. Black/African American respondents had a higher percentage of working 31-40 additional hours weekly compared to White respondents. Black/African American and Other respondents had higher percentages of working 41 or more additional hours a week due to COVID-19 than White respondents. Additionally, there were significant differences between those who were and were not of Hispanic, Latino, and Spanish descent and the number of additional hours worked weekly due to COVID-19. A higher percentage of respondents without a Hispanic, Latino or Spanish Origin (17%) worked 16-30 extra hours per week, while a significantly higher percentage of those with a Hispanic, Latino, and Spanish origin (13%) worked 31-40 hours extra per week. Work life status change since the beginning of the COVID-19 also had significant differences between race groups. A higher percentage of respondents identifying as Black/African American said life was much better compared to White participants. They also felt life was better compared to White participants. These disparities need additional exploration and actions need to be identified and taken to remediate them.

The many changes respondents faced affected their experiences and perceptions of work. For example, for some the pressure of working more or fewer hours could be viewed as stressful, but for others working more hours might be viewed positively because it means more money is coming into the household. That said, the amount of overtime that many DSPs are working is not healthy and contributes to burnout and health related issues. Many DSPs feel pressure to pick up more hours of work due to staff shortages.

Setting Size and Exposure to COVID-19

There were significant differences between setting type where the respondent worked the majority of their time and the number of people supported who had a COVID-19 diagnosis. Respondents working in agency/facility sites and community job/employment sites had higher percentages of supporting individuals with COVID-19 diagnoses compared to those in family or individual homes. Respondents working in family or individual homes had a higher percentage of not supporting any people with a COVID-19 diagnosis and 1-2 people with a COVID-19 diagnosis. Respondents working in agency/facility sites had a higher percentage of supporting 3-5 people with COVID-19. Respondents working in agency/facility sites and community job/employment sites had higher percentages then those in family or individual homes with respect to supporting 6-10 people with a COVID-19 diagnosis. Respondents working in agency/facility sites, family or individual homes, and job/employment sites had significantly different percentages of working with 11 or more individuals with a COVID-19 diagnosis.

Key Reflections on COVID-19 and Experiences of DSPs Supporting People with Intellectual and Developmental Disabilities Over Time

The COVID-19 pandemic has been very hard on people with IDD. Only 12% of respondents reported that the people they support showed no negative consequences from the social isolation they have endured. However, the consequences of social isolation reported in the initial, 6- and 12-month follow-up surveys showed mixed results. The percentages for boredom decreased slightly and evened off over time (80% to 71% to 68% and 68% again). Mood swings/depression went from 57% to 51% to 49% and back up to 56%. Behavior issues were stable going from 52% to 48% to 48% and up higher to 54%. Similarly, loneliness went from 48% to 46% to 43% and back up to 46%. The reason for initial decreases in negative consequences may be the result of an increase in social interactions as restrictions lifted in many places, but increased stresses in other areas may have contributed to a rebound in negative consequences.

“The long term mental health effects being experienced by some of the people I support have begun to manifest in unhealthy ways, including self-harm and behavior regression. Seeking additional resources for these people I support has been difficult, as many medical and mental health providers are still operating at reduced levels.” (FLS)

Moving Forward – What is Needed for DSPs

Ensure DSPs are identified as essential workers in comprehensive, organized, and funded response plans at national and state levels for additional waves of COVID-19 and future pandemics. This workforce needs to be granted official essential worker status in order to retain DSPs in their jobs. Some DSPs are leaving work to care family members or children. Having essential worker status and pay may give DSPs childcare and financial support needed to remain in their jobs. An effective way to support and recognize this workforce and ensure they are listed as essential workers is to establish a standard occupational classification (SOC) code for DSPs.

Develop education and training programs to ensure DSPs have the skills needed to use technology that is a component of the services and support they deliver. One clear result of this survey was the increased use of technology both by respondents and the people they support. While DSPs reported 59% increased use of technology, only 33% of them reported getting a lot of support from their employers to make sure they understand the technologies used by the people they support. The increased use of technology by in supporting people is one outcome of the pandemic that is most likely to continue. Supporting to gain the knowledge, skills and abilities on effective ways to use technology in supporting people requires the availability and use of education and training programs for DSPs as well as FLSs. Education and training programs will need to identify and address current barriers for using technology such as lack of access to technology tools such as Wi-Fi, laptops, phones, and iPads that DSPs will need in order to effectively use technology with the people they support. This will require program organizations to assess what investments are needed to ensure DSPs have access to the technology tools available.

Conduct research to understand the best methods to teach individuals with IDD how to use technology that is incorporated into their services and supports. During the pandemic, the use of technology to support people increased significantly yet the research on the best ways to teach and support people in using technology as part of their services and supports has not kept pace. Investment at the federal and state levels is needed to understand and evaluate best practices in teaching people with IDD how to they can use technology in their daily lives. This research is important to identifying core competencies for DSPs when using technology with the people they support.

“Learned how to teach and connect with others on zoom. Held an inclusive yoga class on zoom that was fun.” (DSP)

Ensure DSPs have access to comprehensive health and wellness programs. Eighty-four percent of respondents indicated reduced health and wellness resulting from working during the COVID-19 pandemic. These issues included anxiety, depression, other mental health issues, physical and/or emotional burnout, sleep issues, physical health complications, loss of a loved one, PTSD, suicidal ideation, and others. A third (33%) of respondents experiencing these issues said they affect their daily work a lot, and only 39% indicated their employer provided support to staff struggling in these areas. It is important to recognize and acknowledge these stressors and to consider their effect on the workforce. DSPs may benefit from access to support and counseling, as has been recommended for direct support workers in other sectors (Clarke et al., 2020).

Develop vaccination campaigns that target direct support professionals. The direct support workforce is at high risk of being exposed to people who are COVID-19 positive. Over three-quarters of the workforce has supported people who were COVID-19 positive and nearly two-thirds have supported more than three individuals with IDD who had COVID-19. Yet 16% of this sample reported that they were not vaccinated. Well-organized and targeted vaccination campaigns for DSPs have been developed and incentives provided for this workforce to get vaccinated. Educational materials that show DSPs their high risk of exposure and respond to their reasons for being hesitant about vaccines have also been developed. However, there need to be continued efforts to support new entrants into the field to get vaccinated if they are not.

“I am working in a variety of roles due to coworkers being out with Covid and I’m working in homes with person who have Covid! Not all coworkers are vaccinated.” (DSP)

Wage increases for essential workers commensurate with the increased level of exposure. Direct support depends largely on human interaction which places workers at increased risk for contracting COVID-19. Half of respondents indicated they were paid higher wages during the pandemic; however, many employees were working a high number of overtime hours. DSP wages need to be augmented like other healthcare and essential workers during national crises and future pandemics. Work needs to happen now to ensure these state-level and national policies are changed and clearly include DSPs.

“We are considered essential workers but we do not get essential work pay.” (DSP)

Access to childcare and support if schools or daycares close. Ensuring essential worker status specific to this occupation would prioritize childcare availability for these families in most states. A large percentage of the workforce is comprised of single mothers with children (PHI, 2019; Hewitt et al., 2019). Access to childcare ensures that DSPs can continue coming to work. Future public health approaches in response to pandemics must include this access so that essential workers in DSP roles can continue to work.

“Just feeling so stressed out when we are low on staff and my company wanting me to work even though I can’t because I can’t find child care beyond my family and they all work too so that has been the most challenging thing.” (DSP)

Access to career ladders that lead to increased skills and compensation. Seventy-three percent of respondents indicated they were primary wage earners in their household, earning an average of $15.31 per hour prior to the pandemic. This workforce needs access to credentialing programs and career ladders that result in higher wages and access to affordable benefits. Credentialing programs provide opportunities for DSPs to increase their skills which results in the provision of higher quality supports and provides an equitable framework on which to ground pay increases.

Create systems-level pathways and incentives to enter this workforce. This industry has had historically high vacancy and turnover rates. Many DSPs lost their jobs due to furloughs or layoffs and others left the field for safety or personal reasons during the pandemic. These cutbacks will likely affect the workforce long-term. Intentional pathways via workforce development and educational programs are needed to guarantee vacancies in the developmental disabilities industry can be filled.

Moving Forward – What is Needed for People with IDD

Develop evidence-based strategies for accessing and using telehealth. In addition to physical and mental health issues, respondents reported that the people they supported had increased challenges in managing their diet and pain. Availability of telehealth appointments could help alleviate these issues by increasing access to supports. Work is needed within the medical community to eliminate disparities and ensure people get the healthcare they need.

Ensure access to technology for people with IDD that allows social interaction with others. Over half of the respondents reported depression, loneliness, and boredom among the people they support related to lifestyle changes from the COVID-19. Technology offers a safe socializing option, and most of the respondents reported the people they supported were using internet-enabled devices for social media and videoconferencing to connect with others. Over half also reported the people they supported were using technology somewhat or a lot more now compared to the beginning of the pandemic. Continued investments in technologies that help people have greater control over their lives and access to virtual social interaction are imperative to help maintain friendships and social contacts in future waves of COVID-19 or other pandemics and crises.

Review of policies to ensure person- and family-centered practices with informed decision-making regarding social contacts during a pandemic. People with IDD and their families should participate together in decisions affecting them. In conjunction with safety training, people who receive supports and their families need to have a say in when and how they partake in community activities. Person-centered services seek to balance people’s preferences with their safety.

Conclusion

A national emergency was declared on March 13, 2020 concerning the COVID-19 pandemic. More than two years later, the crisis remains. These results shed light on the work experiences of direct support workers during this difficult time. The findings underscore a number of systemic problems with provision of services for people with intellectual and developmental disabilities and the vulnerability of the direct support workforce. It is critical that systemic challenges of low wages, high turnover and vacancies, and the effects these challenges have on the lives of people with intellectual and developmental disabilities be addressed through significant policy change. Health and wellness programs, along with employer support, need to be available to the direct support workforce, and equity issues identified for direct support workers of color must be resolved. Additionally, these results provide insight into new opportunities to invest in understanding how to best leverage the integration and use of technology in supporting people.

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