Providing Support During the COVID-19 Pandemic

Direct Support Workforce and COVID-19 National Report: 12-Month Follow-up

September 2021

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 twelve-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, 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 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: 12-Month Follow-up.

Suggested citation:

  • Hewitt, A., Pettingell, S., Bershadsky, J., Smith, J., Kleist, B., Sanders, M., … Kramme, J. (2021). Direct Support Workforce and COVID-19 National Report: Twelve-Month Follow-up. Minneapolis: Institute on Community Integration, University of Minnesota.

Introduction and Background

Across the United States, in March of 2020, many businesses, schools and organizations that support individuals with disabilities followed safety protocols, closed their doors, and began working and participating remotely or in very different ways because of the COVID-19 pandemic. For the vast majority of direct support professionals (DSPs), it was not an option to stop working. Nearly all DSPs continued to work but in different ways and in some cases, different places. From the very beginning of the pandemic, stories emerged from friends and colleagues across the country of the significant challenges in providing supports safely to individuals with intellectual and developmental disabilities 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 important to hear directly from DSPs about their experiences in supporting people with disabilities during a global pandemic. In response, ICI developed three online surveys and collaborated with NADSP to reach 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. All three 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.

Background

Direct support professionals provide critical supports so that people with intellectual and developmental disabilities (IDD) are able to live, work, and thrive in their communities. These professionals perform tasks that are 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). Currently, the Bureau of Labor Statistics does not have an occupational classification for direct support professional. Most commonly this group of professionals are classified under the occupational titles of home health aides, personal care assistants, certified nurse assistants, and others. This is problematic. While DSPs do perform many similar tasks as these other groups, they have many responsibilities that are not included in these other classifications. Supporting people in the community requires high skill, yet this is not reflected in DSP training and compensation. DSP wages are low and have been for decades. In order to pay bills and support families, most DSPs work overtime or multiple jobs. They also have limited access to affordable benefits and consequently more than half rely on some type of public assistance. Far too often and in far too many communities across the United States this workforce is unknown and not given the visibility, value and respect it deserves.

The shortage of direct support workers has been well documented for nearly 30 years. Over 43% of DSPs left their positions in 2019 with one-third leaving in the first six months of employment (National Core Indicators, 2020). Vacancy rates were 8.5% for full-time and 11% for part-time positions. COVID-19 has made what was already an extremely challenging situation even worse. As a result of high vacancies, many DSPs, supervisors, and other staff consistently have to work overtime to provide supports (Hewitt et al., 2019; Test et al., 2003). Another consequence of high vacancies in DSP positions is that sometimes people with IDD go without supports that they need and that have been authorized. Family members often end up providing these supports themselves, which affects their availability to maintain their own employment (Anderson et al., 2002). The threat of contracting COVID-19, social distancing guidelines, and stay-at-home orders affected people with IDD and DSPs. People with IDD are more likely to contract COVID-19 (Gleason et al., 2021) and are at greater risk of mortality from COVID-19 than nearly any other diagnosis type (Kaye, 2021). During the pandemic, they have experienced loss of employment and social isolation. DSPs are most often their primary supports.

In December of 2020, the first vaccine for COVID-19 was made available in the United States (NPR, 2021) and remains the country’s biggest strategy to combat this pandemic. In most states, caregivers were identified as an early approved recipient of vaccinations due to the at-risk nature of their positions and the reality that people with intellectual and developmental disabilities were at extremely high risk of becoming infected and dying of COVID-19. In order to better understand the extent to which DSPs have been vaccinated, a series of questions regarding vaccination status and experiences were added to the 12-month follow-up survey.

The purpose of the initial, 6-month follow-up, and 12-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. Almost 9,000 direct support workers from the U.S. completed the survey between April and May 2020 with at least one survey received from every state. Results of the first survey are available at www.ici.umn.edu/covid19-survey. The second round of data collection took place between November 2020 and January 2021, six months after the first, and examined how workforce systems are supporting DSPs and Frontline Supervisors during the COVID-19 pandemic. The second survey was completed by 8,846 respondents. Results of the second survey are also available at www.ici.umn.edu/covid19-survey. The third round of data collection took place about 12 months after the first, from June 2021 to July 2021, when life appeared to be returning more to pre-pandemic routines and vaccinations were a primary focus. The third survey was again administered online and examined how workforce systems are supporting DSPs and Frontline Supervisors a year and a half after the start of the pandemic, with additional focus on health and well-being and vaccination experiences. The 12-month follow-up survey was completed by 5,356 respondents. The results of the third survey are presented in the current report.

The purpose of the initial, 6-month follow-up, and 12-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 third 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 promoted the survey and distributed the link to DSPs and disability organizations across the country.

Of the 7,366 12-month follow-up surveys opened in Qualtrics, 13% opened the link but did not answer any items, 11% indicated they were DSPs but answered less than six items, 3% were not DSPs or frontline supervisors (FLSs), did not reside in the USA, or were duplicate testers. This left 5,356 surveys in the 12-month follow-up sample. Of those, 3% did not provide the state in which they worked. Analyses at the state level were reported for only those who provided the state item; those without state were reported only in the total sample results.

Of the 3,968 respondents who answered the question about if and when they previously took the Covid-19 DSP survey, 5% said April/May 2020, 3% said November/December 2020, 6% said at both time points, and 87% had not previously completed it. An attempt was made to match respondents who participated in more than one round of administration. However, since providing names and/or email addresses was optional, there were insufficient matches to conduct change over time analyses. Thus, this report and the two reports before it provide information from three different samples at three different points in time.

The final sample included 5,356 respondents.

Analysis

Quantitative Analysis

Descriptive statistics were provided for individual items. Using SPSS version 27 (IBM Corp, 2020), crosstabulation 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 COVID-19, 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

Key words and terms were identified 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 two questions followed by quotes from respondents.

Respondent participation by State

Figure 1. Number of respondents in the 12-month follow-up survey by state/territory of employment

In which state/territory do you work?

Response Options

N

%

Alabama

0

0

Hawaii

0

0

Montana

0

0

US Virgin Islands

0

0

Arizona

5

0.1

California

82

1.6

Colorado

66

1.3

Connecticut

42

0.8

District of Columbia

2

0

Delaware

44

0.9

Florida

6

0.1

Georgia

22

0.4

Guam

1

0

Idaho

2

0

Kansas

17

0.3

Kentucky

39

0.8

Louisiana

1

0

Massachusetts

32

0.6

Maine

46

0.9

Mississippi

29

0.6

North Dakota

49

0.9

Nebraska

15

0.3

New Hampshire

37

0.7

New Jersey

62

1.2

New Mexico

52

1

Nevada

7

0.1

Oklahoma

8

0.2

Oregon

73

1.4

South Carolina

1

0

South Dakota

15

0.3

Utah

1

0

Vermont

8

0.2

Washington

2

0

Wisconsin

17

0.3

West Virginia

3

0.1

Wyoming

10

0.2

Puerto Rico

1

0

Alaska

112

2.2

Illinois

118

2.3

Missouri

130

2.5

North Carolina

139

2.7

Ohio

250

4.8

Pennsylvania

134

2.6

Rhode Island

121

2.3

Tennessee

176

3.4

Texas

151

2.9

Arkansas

272

5.3

Indiana

331

6.4

Maryland

258

5

Michigan

377

7.3

Virginia

383

7.4

Iowa

535

10.3

Minnesota

473

9.1

New York

416

8

Total

5,173

100

The 5,173 respondents who reported the state or territory in which they worked were located in nearly all 50 United States, the District of Columbia, and the territories (see figure 1). There were 4 states with no respondents (7%), 33 states or territories (61%) that had 1-100 respondents, 9 (17%) had 101-250 respondents, 5 (9%) had 251-400 respondents, and 3 (6%) had more than 400 respondents. Individual state reports are available for states with at least 200 respondents at 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 5,332 employees who answered the question on role included:

  • 81% Direct Support Professionals,
  • 18% Frontline Supervisors,
  • <1% Certified Nursing Assistant (CNA), and
  • 1% Other, including, Behavior Technician/Behavior Therapist, Crisis Relief Worker,
  • CEO/Executive Director/Owner, Dietitian/Nutritionist, Healthcare Lead/Medical Lead/Medical Technician, Insurance Authorization Specialist, LPN, Management of Financial Funds, Nurse, PCT, Psych Technician, Quality Assurance, Social Worker, and Support Broker.

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

Job Tenure

The majority survey respondents (82%) had worked in direct support for more than 36 months. Six percent had worked 24 to 36 months, 6% for 12 to 24 months, 4% for 6 to 12 months, and 2% for less than 6 months. The respondents also had longer tenure with their primary employer, with the majority working for their primary employer for more than 36 months (66%). This is similar to the initial survey (59%) and 6-month follow-up survey (62%). Additionally, in the 12-month survey, 10% had worked at their primary employer for 24-36 months, 11% for 12-24 months, 8% for 6-12 months, and 5% for less than 6 months. The results are presented in figure 2.

Figure 2. Percentage of respondents in the 12-month follow-up survey by length of time working in direct support at primary employer

  • More than 36 months: 66%
  • 24-36 months: 10%
  • 12-24 months: 11%
  • 6-12 months: 8%
  • Less than 6 months: 5%

Settings where Supports were Provided

Survey respondents reported the primary setting where they provided supports (figure 3). Sixty-three percent provided support primarily in agency or facility settings (e.g., group home, sheltered workshop), 28% in family or individual homes, 7% 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%), and 6-month follow-up survey percentages were similar to those in the 12-month follow-up survey.

Figure 3. Percentage of respondents in the 12-month follow-up survey working primarily in service setting types

  • Agency/Facility Site: 63%
  • Family or Individual Homes: 28%
  • Community Employment/Job Sites: 7%
  • Other Sites: 2%

Results – Demographic Characteristics

Gender, age, race, ethnicity, immigration status

In the 12- and 6-month surveys, respondents provided information about their gender identity, age, race, ethnicity, and immigration status. In the 12-month survey, eighty-three percent identified as women (including transgender women), 15% men (including transgender men), and 1% non-binary and preferring to self-describe, respectively. The average age was 45 years. Respondents reported their race as:

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

Six percent of respondents indicated their ethnicity as Latinx, and 8% were first- or second-generation immigrants to the U.S. The demographic composition of the 12-month follow-up survey is similar to the 6-month follow-up survey. Demographic information was not collected in the initial survey.

The demographics reflected in this study of DSPs supporting people with intellectual and developmental disabilities are not congruent with other studies in the aging and physical disability sectors where 59% of the workforce is identified as being people of color and 26% immigrants (PHI, 2021).

Wages Paid and Primary Wage Earner Status

Seventy-one percent of respondents were the primary wage earner in the household which was comparable to those in the initial and 6-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 COVID-19. Wage-related information was summarized by employee type, whether DSP, FLS, CNA, or other. For DSP positions, the average hourly wage was $14.18 (median = $13.73, range $6.78 to $40.00). The other types of workers, except CNAs, were paid higher wages on average than DSPs. Managers, supervisors, directors, and coordinators made, on average, $18.10 per hour (median = $17.25, range $7.25 to $65.00). CNAs made, on average, $13.69 per hour (median = $13.50, range $7.00 to $19.00). Other positions made, on average, $17.06 per hour (median = $15.08, range $6.47 to $40.00).

Respondents were also asked to report their current hourly wage rate. For DSP positions, the average hourly wage was $14.60 (median = $14.18, range $6.25 to $40.00). Managers, supervisors, directors, and coordinators made, on average, $18.86 per hour (median = $18.00, range $8.25 to $65.00). CNAs made, on average, $14.22 per hour (median = $14.50, range $7.00 to $19.00). Other positions made, on average, $17.32 per hour (median = $15.85, range $8.93 to $40.00). See the “Job Titles” section for the description of “other positions.” Table 1 details wage and primary wage earner information for DSPs.

Table 1. Wage and primary wage earner status for DSPs* in the 12-month follow-up survey

Average pre-pandemic hourly wage of DSPs*

$14.18

Average current hourly wage of DSPs*

$14.60

Received salary augmentation as Essential Worker

27%

Self-identified as the primary wage earner in their household

71%

* Managers/supervisor, directors/coordinators, and other licensed staff (a total of 19% of the sample) were excluded from calculation of average wages.

Hourly Wages by Race and Ethnicity

As seen in figure 4, for DSPs, there were significant differences between race groups and current hourly wages. DSPs identifying as Black/African American made, on average, $0.57 per hour less than those identifying as White ($14.70) and $0.79 per hour less than those identifying as Other ($14.92). There were no significant differences between those who identified or did not identify as Latinx and current hourly wages. 

There were also significant differences between DSPs of different race groups with respect to pre-pandemic hourly wages. Pre-pandemic, DSPs identifying as Black/African American made, on average, $0.69 per hour less than those identifying as Other ($14.57). A similar pattern was seen in the 6-month follow-up survey where DSPs identifying as Black/African American made, on average, $13.57, which was $0.41 and $0.62 less per hour respectively than White ($13.98) and those identifying as Other ($14.19) DSPs. Additionally, in the 6-month follow-up survey, White DSPs made, on average, $0.21 less per hour than Other DSPs, a significant difference was not seen at the 12-month follow-up survey. There were significant differences in pre-pandemic wages between those who were and were not of Latinx descent. Those of Latinx descent made, on average, $14.30, which was $0.39 more per hour than those not of Latinx descent ($13.91).

Figure 4.  DSP wages in the 12-month follow-up survey by race group

Race group

Pre-pandemic

Current

Black/African American*^

$13.88

$14.13

White^

$14.21

$14.70

Other (America Indian/Native American, Asian, Other, 2 or more race groups)*^

$14.57

$14.92

* Black/African American DSPs made significantly less pre-pandemic than individuals identifying as Other. ^ Black/African American DSPs made significantly less currently than individuals identifying as White or Other.

Salary Augmentation for Essential Workers

Ninety-six percent of respondents self-identified as essential workers. In most industries, one benefit of “essential worker” status was access to essential worker salary augmentation. In community supports for persons with disabilities, only 27% of respondents in this 12-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 and 30% in the 6-month follow-up survey. The amount of the wage increase for respondents is depicted in figure 5. Of the 27% in the 12-month follow-up survey who received a salary augmentation, 16% received an increase of $0.01 to $1.00 per hour, 27% received $1.01 to $2.00 per hour, 24% received $2.01 to $3.00 per hour, 9% received $3.01 or more per hour, and 24% received a lump sum bonus.

Figure 5. Percentage of respondents in the 12-month follow-up survey receiving extra pay due to COVID-19 risks

  • $0.01 - $1.00 per hour: 16%
  • $1.01 - $2.00 per hour: 27%
  • $2.01 - $3.00 per hour: 24%
  • More than $3.01 per hour: 9%
  • I received a lump sum: 24%

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,
  • 10% said $15,000 to $21,999,
  • 35% said $22,000 to $39,999,
  • 43% said $40,000 to $99,999,
  • 8% 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). Fourteen percent of survey respondents fell into this bracket. It is important to note that to qualify for most federal and state benefits household incomes can be 125-150% of the federal poverty level and this puts the income threshold at $27,450 to $32,580 which includes roughly half of the respondents in this survey.

Education

Most respondents (73%) had education beyond high school. Fifteen percent had a two-year degree, 30% had some college, 20% had a four-year bachelor’s degree, and 8% had a graduate degree. Another 25% had a high school diploma, 1% completed 12th grade but had no diploma, and 1% had an 11th grade education or less.

73% of respondents had education beyond high school.

Annual Household Income by Primary Wage Earner

There were significant differences between respondents who were and were not primary wage earners and annual household income (see figure 6). Fifty-nine percent of those who were the primary wage earners in their households reported $39,999 or less for their annual household income compared to 20% 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 each income level. Those who were primary wage earners had significantly higher percentages of annual incomes of $14,999 or less (5% vs. 2%), $15,000 to $21,999 (12% vs. 4%), and $22,000 to $39,999 (42% vs. 14%) compared to households where the respondent was not the primary wage earner. Conversely, households where respondents were not the primary wage earner had significantly higher percentages of annual incomes of $40,000 to $99,999 (58% vs. 38%), $100,000 to $200,000 (20% vs. 3%), and over $200,000 (2% vs. <0.1%) compared to households where the respondent was the primary wage earner. Patterns were similar in the 6-month follow-up survey. Sixty-four percent of those who were the primary wage earners in their households reported $39,999 or less for their annual household income compared to 25% of those who were not the primary wage earners in their households.

Figure 6. Primary wage earner in the 12-month follow-up survey by annual household income

  

Primary wage earner

Not primary wage earner

$14,999 or less *

5%

2%

$15,000 to $21,999 *

12%

4%

$22,000 to $39,999 *

42%

14%

$40,000 to $99,999 *

38%

58%

$100,000 to $200,000

3%

20%

Over $200,000 *

<1%

2%

*There were significant differences between primary wage earner status and annual household income for each income level.

Annual Household Income by Race and Ethnicity

As seen in figure 7, there were significant differences between race groups and annual household income. A significantly higher percentage of respondents identifying as Black/African American (6%) made $14,999 or less than White (4%) or Other (4%) respondents. Similarly, Black/African American respondents had significantly higher percentages of annual household incomes of $15,000 to $21,999 (13% vs. 9%) and $22,000 to $39,999 (39% vs. 33%) compared to White respondents. A significantly higher percentage of respondents identifying as White (45%) had annual household incomes of $40,000 to $99,999 compared to Black/African Americans (38%) and Other (38%). Lastly, White (9%) and Other (10%) respondents had significantly higher percentages of making $100,000 to $200,000 annual household incomes than Black/African Americans (4%). There were no significant differences between those who were and were not of Latinx descent and annual household income.

Figure 7. Race in the 12-month follow-up survey by annual household income

  

Black/African American

White

Other (American Indian/Native American, Asian, Other, 2 or more race groups)

$14,999 or less *

6%

4%

4%

$15,000 to $21,999 *

13%

9%

11%

$22,000 to $39,999 *

39%

33%

36%

$40,000 to $99,999 *

38%

45%

38%

$100,000 to $200,000 *

4%

9%

10%

Over $200,000

<1%

<1%

1%

* Black/African American respondents had a significantly higher percentage annual household income of $14,999 or less, $15,000 to $21,999, and $22,000 to $39,999. White respondents had a significantly higher percentage with an annual household income of $40,000 to $99,999. White and Other had significantly higher percentages of annual household income of $100,000 to $200,000.

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

In the 12-month follow-up survey, over one-third (34%) of respondents reported working more than 40 hours per week prior to the COVID-19 pandemic in January 2020. Twenty-six percent worked 1 to 15 additional hours per week due to the COVID-19 pandemic, 12% worked 16 to 30 additional hours per week, and 24% worked 31 + additional hours per week due to the pandemic. Thirty-eight percent did not work any additional hours per week due to the COVID-19 pandemic. See figure 8. The percentage of respondents working 31+ additional hours per week was lower in both the initial (15%) and 6-month follow-up (17%) surveys.

Figure 8. Percentage of respondents in the 12-month follow-up survey working additional hours per week due to the COVID-19 pandemic

  • 31+ hours: 24%
  • 16 to 30 hours: 12%
  • 1 to 15 hours: 26%
  • None: 38%

In the 12 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 9). A significantly higher percentage of respondents identifying as White (40%) worked no additional hours compared to Black/African Americans (34%) and Other (31%). Respondents identifying as White (27%) also had a significantly higher percentage of working 1-15 additional hours compared to Black/African Americans (24%). Black/African American (10%) respondents had a significantly higher percentage of working 31-40 hours weekly compared to White (7%) respondents, and both Black/African American (21%) and Other (23%) respondents had significantly higher percentages of working 40 or more additional hours a week due to COVID-19 than White respondents. There were no significant differences between those who were and were not of Latinx descent and number of additional hours worked weekly due to Covid-19. A similar pattern was seen in the 6-month follow-up survey. Significantly higher percentages of respondents identifying as White (39%) or Other (34%) worked no additional hours compared to Black/African Americans (27%). Both respondents who identified as Black/African American (9%) and Other (8%) had significantly higher percentages of working an additional 31-40 hours weekly due to COVID-19 compared to White respondents (5%). A significantly higher percentage of respondents who identified as Black/African American (17%) worked more than 40 additional hours a week due to COVID-19 compared to White (9%) and Other (10%) respondents.

Figure 9. Extra weekly hours worked in the 12-month follow-up survey by race

  

Black/African American

White

Other (American Indian/Native American, Asian, Other, 2 or more race groups)

None *

34%

40%

31%

1-15 hours *

24%

27%

25%

16-30 hours

11%

13%

12%

31-40 hours *

10%

7%

9%

41 or more hours *

21%

13%

23%

* White respondents had a significantly higher percentage of not working additional hours and working 1-15 additional hours due to COVID-19. Black/African American respondents had a significantly higher percentages of working an additional 31-40 hours per week due to COVID-19, and Black/African Americans and Other respondents had a significantly higher percentages of working 40 or more additional hours per week due to COVID-19.

Changes in Work Schedule

Sixty 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 reasons were offered:

  • 40% had additional responsibilities/different roles,
  • 30% working more hours per week,
  • 26% working different shifts,
  • 20% working in different settings,
  • 18% providing supports to different people,
  • 9% working remotely/telehealth/virtual,
  • 5% working less hours per week,
  • 3% were furloughed/laid off/unemployed/facility closed, and
  • 4% identified other changes.

The 12-month survey percentages are lower than those in the initial survey, where 34% worked more hours per week, 30% worked different shifts, 29% worked in different settings, 2% worked remotely/telehealth/virtual, 8% worked less hours per week, and 2% were furloughed/laid off/unemployed/facility closed. The 6-month follow-up survey also had higher percentages – 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.

Results – Impact of pandemic on Staffing Patterns and Practices

Pandemic Impact on Turnover and Vacancy

Nearly two-thirds (62%) of respondents said that they know of staff who left their jobs due to the COVID-19 pandemic. When asked about the reason(s) their coworkers were no longer working, 21% cited family reasons (e.g., caring for someone with health issues, homeschooling kids), 18% noted fear of becoming infected with COVID-19, 18% cited childcare issues (e.g., no daycare available), 12% cited needing to quarantine due to COVID-19 exposure, 12% cited testing positive for COVID-19, 7% noted fear of infecting others, and 21% noted other reasons. See figure 10. With the exception of testing positive for COVID-19, these percentages are lower than in the initial survey, where 34% cited fear of becoming infected, 25% listed childcare issues, and 13% noted fear of infecting others. In the initial survey, 9% cited testing positive for COVID-19 as a reason for leaving; this was higher at the 12-month follow-up survey. The 6-month survey results were similar to those from the 12-month survey.

Figure 10. Reasons cited by respondents in the 12-month follow-up survey that their coworkers were no longer working

  • Family reasons: 21%
  • Other: 21%
  • Fear of becoming infected: 18%
  • Because of child care issues: 18%
  • Because of quarantine due to COVID-19 exposure: 12%
  • Because of testing positive for COVID-19: 12%
  • Fear of infecting others: 7%

When asked on a scale of 1 (no negative impact) to 10 (extreme negative impact) how much of a negative impact the pandemic has had on themselves and their coworkers, the average negative impact rating given by respondents was 7.

Provision of Personal Protective Equipment and Safety Measures

Personal protective equipment (PPE) was in short supply as the pandemic began. A year and a half after the start of the pandemic, 91% of respondents said they have enough PPE; however, 20% said they had to pay for their PPE out of pocket.

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 12-month follow-up survey included:

  • 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
  • 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.

Three 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. 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 a year and a half after the start of the pandemic. As shown in figure 11, 6% indicated their work life was much better, 19% said better, 40% said the same, 26% said worse, and 9% 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. This question was not included in the initial survey.

Figure 11. Respondent work life status in the 12-month follow-up survey

  • Much better: 6%
  • Better: 19%
  • The same: 40%
  • Worse: 26%
  • Much worse: 9%

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 (8%) said life was much better compared to White (6%) respondents. White (9%) and Other (10%) respondents had significantly higher percentages of feeling life was much worse than Black/African American (5%) respondents. There were no significant differences between those who were and were not of Latinx descent and work life status change since the beginning of the pandemic.  In the 6-month survey, a significantly higher percentage of respondents identifying as Black/African American (4%) said their work life was much better compared to White (2%) or Other (2%) respondents. Black/African Americans (9%) also had a significantly higher percentage of feeling their work life was better than White respondents (5%). White (42%) respondents had a significantly higher percentage of feeling their work life was worse than Black/African Americans (34%) and much worse than Black/African Americans (15% vs. 9%).

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

  

Black/African American

White

Other (American Indian/Native American, Asian, Other, 2 or more race groups)

Much better *

8%

6%

7%

Better

20%

19%

21%

The same

43%

40%

39%

Worse

24%

26%

23%

Much worse *

5%

9%

10%

* Black/African American respondents had a significantly higher percentage of feeling work life was much better than those identifying as White; White and Other respondents had higher percentages of feeling work life was much worse than Black/African Americans.

When asked if they would stay in their job for at least another six months, 80% of respondents said yes while 16% were unsure and 4% said no.

Pandemic health and wellness experiences due to COVID-19

In the 12-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:

  • 50% physical and/or emotional burnout,
  • 47% anxiety,
  • 38% sleep difficulties,
  • 36% depression,
  • 18% physical health complications,
  • 4% suicidal ideation, and
  • 4% listed other reasons.

Eighteen percent of respondents did not have any of these experiences. Themes that emerged in the other reasons included: anger/frustration/irritation, PTSD, being laid off/financial stress, family issues, fear, having gotten COVID-19, isolation/loneliness, having lost someone, stress, and weight gain/overeating/being less active.

Results – Respondent Exposure to COVID-19 by Setting Type

Over half (57%) of respondents responding to the 12-month follow-up survey said they had been exposed to COVID-19, and 19% said they had had a COVID-19 diagnosis. As seen in figure 13, there were significant differences between setting type where the respondent worked and whether they had been exposed to COVID-19. Respondents working in agency/facility sites had a significantly higher percentage of exposure (62%) compared to those in community job/employment sites (50%) and family or individual homes (46%). These exposure numbers are higher than the 6-month follow-up survey, where 47% of respondents said they had been exposed to COVID-19 through their work, and respondents had percentages of exposure of 52% in agency/facility sites, 44% in community job/employment sites, and 38% in family or individual homes.

Figure 13. Respondent exposure to COVID-19 in the 12-month follow-up survey by setting type

  • Community Job/Employment: 50%
  • Family/Individual Home: 46%
  • Agency/Facility *: 62%

*Agency/facility sites had a significantly higher percentage of exposure to COVID-19.

Results – Impact of COVID-19 on People Receiving Supports

At the time of the 12-month follow-up survey, 22% had supported 1-2 people diagnosed with COVID-19, 18% supported 3-5 people, 9% supported 6-10 people, and 7% supported 11 or more people. 44% respondents had not supported anyone diagnosed with COVID-19. See figure 14. This compares to 91% of respondents in the initial survey and 59% in the 6-month follow-up survey who had not yet supported anyone with a diagnosis of COVID-19.

Figure 14. Percentage of people supported in the 12-month follow-up survey with COVID-19 diagnosis

  • 0 people: 44%
  • 1-2 people: 22%
  • 3-5 people: 18%
  • 6-10 people: 9%
  • 11 or more people: 7%

Percentage of people supported who had COVID-19 diagnosis by Setting Type

Similarly, this analysis examined the setting type where the survey respondent worked the majority of their time and the number of people supported who had a COVID-19 diagnosis. 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 (62%) and community job/employment sites (67%) had significantly higher percentages of supporting individuals with COVID-19 diagnoses compared to those in family or individual homes (41%). Respondents working in family or individual homes had a significantly higher percentage of not supporting any people with a COVID-19 diagnosis. Individuals working in community job/employment sites, family or individual homes, and agency/facility sites all differed significantly from each other with respect to supporting 1-2 people with a COVID-19 diagnosis (29%, 23%, and 20%, respectively). Respondents working in family or individual homes had a significantly lower percentage of supporting 3-5 people (12% vs. 20% for agency/facility and 23% community job/employment sites) with a COVID-19 diagnosis. Individuals working in community job/employment sites, family or individual homes, and agency/facility sites all differed significantly from each other with respect to supporting 6-10 people with a COVID-19 diagnosis (8%, 4%, and 12%, respectively). Respondents working in family or individual homes had a significantly lower percentage (2%) of working with 11 or more individuals with a COVID-19 diagnosis. In the 6-month follow-up survey, the same pattern was seen for respondents supporting none, 3-5 people and 11 or more people.

Table 2. Percentage of People Supported with COVID-19 in the 12-month follow-up survey by Setting Type

  

Setting Type

Agency/Facility

Family/Individual Home

Community Job/Employment

# People Supported

%

%

%

None

38%

59% *

33%

1-2 people

20% *

23% *

29% *

3-5 people

20%

12% *

23%

6-10 people

12% *

4% *

8% *

11 or more people

10%

2% *

7%

Total

100

100

100

* Family/Individual Home had a significantly higher percentage of supporting no people with COVID-19; All sites differed with serving 1-2 and 6-10 people with COVID-19; Those in family/individual homes had lower percentages of supporting 3-5 and 11 or more people with COVID-19.

Nearly three-fourths (71%) of respondents reported social distancing measures still in place where they work. When asked how the people who received supports were doing with following social distancing measures at the time of the 12-month follow-up survey, 19% of respondents said excellent, 40% good, 31% fair, and 10% poor. Figure 14 details these perceptions about people supported following guidelines for social distancing. This was an improvement from 58% in the initial survey and 42% in the 6-month follow-up survey.

Figure 14. Respondent perceptions in 12-month follow-up survey on social distancing of people they supported

  • Poor: 10%
  • Fair: 31%
  • Good: 40%
  • Excellent: 19%

Respondents also reported on the frequency the people they supported were allowed in-person visits with their family members or friends. Forty-eight percent of respondents said that the people they supported were often allowed to visit with their family members or friends in-person, 34% said sometimes, 12% said seldom, and 6% said never as they were not allowed to have visitors in their home. This compares to 64% and 27% of respondents reporting that the people they supported were never able to have visitors in the initial and 6-month surveys, respectively.

Respondents were asked about the consequences the people they supported were experiencing due to the social isolation from the COVID-19 pandemic. The 12-month follow-up survey respondents reported the following consequences experienced by the people they supported:

  • 73% missed going out into the community,
  • 68% boredom,
  • 54% decreased exercise,
  • 49% more anxiety,
  • 49% increased mood swings and/or depression,
  • 48% increased behavior issues,
  • 43% loneliness,
  • 40% sleeping more than usual,
  • 28% regression,
  • 17% difficulty addressing dietary issues,
  • 9% sleeping less than usual,
  • 7% difficulty addressing pain management,
  • 7% academic concerns, and
  • 12% other health issues.

Eight percent said they had seen no negative consequences from social isolation. 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. Percentages in the 12-month follow-up survey did not change substantially from those in the 6-month follow-up survey.

When asked on a scale of 1 (no negative impact) to 10 (extreme negative impact) how much of a negative impact the pandemic has had on the people they support, the average negative impact rating given by respondents was 7.

Return to pre-pandemic activity for people supported

In the 12-month follow-up survey, respondents were asked the extent they felt the people they supported had their life back to pre-pandemic levels. Five percent said completely, 29% said mostly, 56% said somewhat, and 10% said not at all. Respondents were also asked the extent to which several common activities returned to normal pre-pandemic levels for the people they supported. Figure 15 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.

Figure 15. Return to pre-pandemic activity in the 12-month follow-up survey for people supported

  

Not at all

Somewhat

Mostly

Completely

Volunteering in community

47%

31%

13%

9%

Seeing friends

12%

45%

26%

17%

Seeing family

4%

39%

30%

27%

Going on vacation

38%

36%

15%

11%

Working at job

21%

30%

25%

24%

Attending day program

24%

29%

24%

23%

Spending time in faith community

31%

39%

18%

12%

Going shopping/errands

14%

46%

24%

16%

Going to entertainment venue

42%

40%

11%

7%

Going out to eat

23%

49%

18%

10%

Forty-seven percent of respondents said volunteering in the community has not at all returned to pre-pandemic levels for the people they support, 31% said somewhat, 13% mostly, and 9% completely. For seeing friends, 12% of respondents said not at all, 45% said somewhat, 26% said mostly, and 17% said completely. Four percent of respondents said seeing family has not at all returned to normal levels for the people supported, 39% somewhat, 30% mostly, and 27% completely. For going on vacation, 38% of respondents said not at all, 36% somewhat, 15% mostly, and 11% completely. Twenty-one percent of respondents said working their jobs has not at all returned to normal for people supported, 30% said somewhat, 25% mostly, and 24% completely. For attending day program(s), 24% of respondents said not at all, 29% somewhat, 24% mostly, and 23% completely. Thirty-one percent of respondents said not at all for spending time in a faith community, 39% said somewhat, 18% mostly, and 12% completely. For going shopping or running errands, 14% of respondents said not at all, 46% said somewhat, 24% mostly, and 16% completely. Forty-two 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, 40% said somewhat, 11% mostly, and 7% completely. For going out to eat, 23% of respondents said not at all, 49% said somewhat, 18% mostly, and 10% completely.

Results – Vaccinations

Respondents were asked if they had been vaccinated against COVID-19. Sixty-nine percent 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 (see figure 16).

Figure 16. Respondent vaccination status in the 12-month follow-up survey

  • Yes, fully: 69%
  • Yes, partially: 3%
  • Not yet but scheduled: 2%
  • No: 26%

Vaccinated survey respondents

Those who were fully or partially vaccinated were asked several questions about their experience. As seen in figure 21, reported vaccinations for respondents began in December 2020 with three-quarters having had their first shot by March 2021. Four percent had their first shot in December 2020, 27% in both January and February 2021, 20% in March 2021, 12% in April 2021, 7% in May 2021, 2% in June 2021, and 1% in July 2021.

Figure 17. Timing of respondent vaccination in the 12-month follow-up survey

  1. December 2020: 4%
  2. January 2021: 27%
  3. February 2021: 27%
  4. March 2021: 20%
  5. April 2021: 12%
  6. May 2021: 7%
  7. June 2021: 2%
  8. July 2021: 1%

When asked if their employer arranged and paid for their vaccination, 35% said their employer did not arrange or pay, 3% said paid only, 15% said arranged only, and 47% said their employed both arranged and paid for it.

Respondents received their vaccinations from various locations including:

  • 31% at work site or employer office
  • 27% at a mass vaccination site
  • 18% in a pharmacy or doctor’s office
  • 14% at a pop-up or community vaccination clinic, and
  • 10% at another location.

Themes from other responses included church, health department, and hospital.

Survey respondent and coworker vaccination hesitancy

Twenty-six percent of respondents reported not being vaccinated and not having an appointment scheduled. Reasons for their choice not to be vaccinated included the following:

  • 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.

Common themes from other reasons included: vaccinations being against beliefs/spiritual beliefs, allergies, strongly opposed to vaccinations in general, concern about side effects (long and short term), conspiracy theories/politics/misinformation, simply “don’t want to get it,” fear of needles, had COVID-19/has antibodies, needs FDA approval, not enough research/need more research, pregnant/breastfeeding/fertility issues, and other health issues.

All respondents were also asked separately about reasons their coworkers indicated as to why they were hesitant to get vaccinated. Reasons listed for coworkers being hesitant to get vaccinated included:

  • 52% said their coworkers do not feel it is safe,
  • 29% said their coworkers do not believe in the worth of vaccinations,
  • 28% said their coworkers do not feel they need it,
  • 2% said their coworkers have difficulty accessing it,
  • 1% said their coworkers were not eligible,
  • 1% said it was due to cost, and
  • 5% listed another reason.

Common themes from other reasons included: vaccinations being against beliefs/spiritual beliefs, allergies, strongly opposed to vaccinations in general, concern about side effects (long and short term), conspiracy theories/politics/misinformation, simply “don’t want to get it,” fear of needles, had COVID-19/has antibodies, history of injustice and experimentation on people of color, needs FDA approval, not enough research/need more research, pregnant/breastfeeding/fertility issues, and other health issues.

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

In the 12-month follow-up survey, 93% percent of respondents did not work for employers requiring them or their coworkers to be vaccinated in order to work for their organization. Three-quarters (76%) of respondents worked for employers who did not offer paid time off (PTO) to get vaccinated, and an equal percentage (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 when the people with IDD whom they supported were vaccinated. As seen in figure 18, reported vaccinations for people supported began in December 2020 with over three-quarters having had their first shot by March 2021. Six percent had their first shot in December 2020, 26% in January 2021, 29% in February 2021, 23% in March 2021, 10% in April 2021, 5% in May 2021, 1% in June 2021, and <1% in July 2021.

Figure 18. Timing of vaccinations of people supported in the 12-month follow-up survey

  1. December 2020: 6%
  2. January 2021: 26%
  3. February 2021: 29%
  4. March 2021: 23%
  5. April 2021: 10%
  6. May 2021: 5%
  7. June 2021: 1%
  8. July 2021: <1%

Respondents were asked how many of the people they support with IDD were vaccinated. Five percent said none, 6% fewer than half, 37% more than half, and 52% said all of the people they support were vaccinated.

Survey Respondent Perspectives

Two questions were included on the 12-month follow-up survey that allowed respondents to respond in an open-ended format. The questions were: A year after the start of the pandemic, what is one most significant positive change in your work life? and A year after the start of the pandemic, what is one most significant challenge in your work life?

What was the most significant positive change in your work life a year after the start of the pandemic?

Of the 3,554 responses to this question, better safety measures (15%) was the most frequently mentioned positive change in work life experienced by respondents in their work life. This included hygiene and cleaning protocols, social distancing, access to personal protective equipment, and getting vaccinated.

"One year post pandemic, the most significant positive change in my work life is knowing the commitment my job has to ensure overall health and safety."

"All of the health and safety measures put in place at work will minimize the future spread of viruses and bacteria."

"High rate of vaccination among coworkers and people we support (which has a huge effect on mental health and overall morale)."

Twelve percent of respondents simply replied “nothing” or “none” in response to significant positive changes in their work life since the pandemic started.

"There is nothing positive at the moment."

"Nothing. Still understaffed, underpaid, underappreciated, and taken advantage of."

An increase in pay was a significant positive change for 6% of respondents, though many received bonuses or temporary increases rather than permanent increases.

“I don't have to work as many hours due to getting a new job with slightly better pay.”

"We finally got a deserved pay raise."

"More money due to overtime but no pandemic pay increase."

Five percent of respondents spoke of better relationships among staff, management, and the people they support. This included improved communications and spending quality time with those they support.

"The communication with supervisors and other staff is much better."

"We taught [the people we support] to communicate with family and others using methods of technology via email, FaceTime and cellphones and online shopping."

Other responses include being able to return to the community with the people they support (3%), using technology to work remotely or connect the people they support with family, friend, and medical professionals through applications like Zoom.

"On occasion, I am still permitted to work remotely here and there for days when I have a lot of admin work."

"I love doing Zoom doctor appointments."

What was the most significant challenge in your work life a year after the start of the pandemic?

One of the most frequently cited reason for challenges in work life a year after the start of the pandemic was being short staffed, mentioned in 16% of the 3,785 responses. Many respondents worked long hours, worked in multiple locations, experienced chaotic schedules, and felt unsupported due to the worker shortage.

“NO STAFF. I have to work extra or have EXTRA clients added to our group and it is TOO MUCH to handle, overwhelming and unsafe.”

“Staffing shortages [are] unlike anything I have ever seen in this field of work ever.”

Difficulty with COVID-19 restrictions was also a significant challenge for 17% of the respondents. This includes mask wearing, for themselves and the people supported; social distancing; and changes in regulations and safety protocols.

“[It is challenging] getting individuals to wear masks and keep them on while to stay indoors all the time.”

“The most significant challenge post-pandemic is the mask wearing for vaccinated staff.”

“The constant change of protocols frustrates the clients.”

“[A significant challenge is the] unclear policies that change often.”

Thirteen percent of respondents mentioned difficulties in supporting people with intellectual and developmental disabilities to understand the many changes brought about by the pandemic and find solutions that would address issues including not being able to interact with family and friends in the community, increased behaviors, anxiety, boredom, and depression.

"Being creative and making sure the clients actually understands what you mean with all of the alternative ways we have had to change our lifestyles."

“[A significant challenge is] the increase in behaviors due to loneliness, anxiety,  depression, and boredom because of lack of outside contact with friends and family."

Fear of catching COVID-19 of infecting others, including family, people supported, and the families of people supported, was noted by 7% of respondents.

"Worry that I'll get infected and endanger my family."

"Fear of getting COVID-19 or passing it to my clients/clients’ family."

Lack of appreciation was mentioned by 6% of respondents, who experienced this primarily through low wages. Many respondents asserted that words of thanks was not sufficient appreciation when they lack benefits and wages.

"Income being decreased in September back to $10.35. Not enough to survive; have to work as a substitute teacher too. People are getting hired at McDonald’s [at] $16.25 to start. I want to stay with the company, love helping, but I have to survive too."

“Realizing we are only valued by our company through words and not paid time off, sick leave, mental health days, lack of hazard pay.”

"Working copious amounts of overtime but state agency doesn’t recognize efforts and sacrifices that providers are making to continue to assist individuals. No hazard pay. No retention pay. Nothing."

Other work life challenges noted by DSPs include family issues, including childcare (4%), “nothing” (4%), and loss of job or hours (1%).

Key reflections on COVID-19 and DSP Experiences Over Time

Respondents continued to provide critical supports for people with IDD throughout 2020 and 2021 in the midst of the COVID-19 pandemic. The following sections summarize findings from the 12-month follow-up survey and put them in context over time.

Respondent tenure

Similar to the initial survey (59%) and second 6-month follow-up survey (62%), a large majority of the 12-month follow-up respondents (66%) reported they had worked in direct support at their primary employer for 36+ months, while only 5% had worked at their primary employer for less than 6 months. This is compared to organizations reporting in 2019 that 37% of their DSP workforce had been employed for 36+ months and 18% for 6 months or less (National Core Indicators, 2020). Given the tenure of the workforce in the 12-month follow-up survey, these respondents bring a unique perspective related to their expertise in the field and their commitment to direct support.

Respondent Demographics

The 12-month follow-up survey gathered information about respondent demographics. The demographics of the survey respondents indicated that 83% were women (including transgender women) with average age of 45 years. This is close to the national average of 86% and 41 years reflected in a national sample of home care workers across service sectors (PHI, 2021). Seventy-two percent of respondents identified as White, 19% as Black/African American, 6% as Latinx, 2% as American Indian/Native American, 1% as Asian, 2% as another race, and 4% as two or more races. The initial survey did not gather this information, but the numbers are similar to those in the 6-month follow-up survey. These demographics likely do not reflect the diversity of the direct support workforce as in other studies that included the aging and physical disability sectors, where 59% of the workforce is identified as being people of color and 26% as immigrants (PHI, 2021). Further examination is needed to compare these demographics by region of the country.

Wages are also an important finding. In this study the average pre-pandemic wage for DSPs was $14.18 per hour. The average current wage for DSPs was $14.60 per hour. This group of survey respondents had a much longer tenure than typical DSPs, given that 66% had been in their positions for 36 or more months. This likely influences the hourly rate being higher than in other studies (National Core Indicators, 2020). That said, a family of three cannot live on this wage and meet expenses. It is important to note that Black/African American respondents were more likely to have lower salaries and household incomes than other groups. Roughly half of respondents indicated that their household income fell below 125-150% of the federal poverty level for a family of three. This means they are eligible for many federal and state governmental benefits available to poor people. Furthermore, 73% of respondents reported that they have education beyond high school, indicating that these are not entry-level workers.

Working many hours per week

Prior to the COVID-19 pandemic in January 2020, over one-third of respondents reported working more than 40 hours per week. The need to work additional jobs or overtime hours has been documented for decades in the direct support workforce (Hewitt et al., 2019; Test et al., 2003). Although there were many changes in the workforce since the pandemic started, 30% of respondents indicated that they are working more hours per week and 40% had additional responsibilities or different roles. Respondents reported that the additional overtime and work in different roles and locations added to symptoms of burnout, stress, anxiety, depression, and isolation. Continuing to expect workforce staff to pick up additional hours, modify their work life and hours, and add new roles and responsibilities does not promote health and wellness and only serves to exacerbate ongoing issues of retention within this workforce. More systems-level solutions that build pipelines, 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, and isolation are critical.

Work life is still difficult

Over one-third of respondents (35%) indicated that their work life is worse or much worse which is an improvement from the 6-month survey of 54%. One-quarter said that it is better or much better. While 96% of respondents self-identified as essential workers, only 27% reported receiving salary augmentations as an essential worker. This is comparable to the results of the earlier surveys, in which 24% and 30%, respectively, reported receiving salary augmentations.

Eight percent of respondents reported on the increased financial stress they experienced from reduced work hours or being laid off. Additional expenses for family and childcare added to respondents’ financial burden and was a common reason many direct support workers in other sectors left their jobs (Cimarolli & Bryant, 2021). Eighty-two percent of respondents indicated increased health and wellness issues resulting from working during the COVID-19 pandemic. These issues included anxiety, depression, physical and/or emotional burnout, isolation/loneliness, sleep issues, physical health complications, suicidal ideation, and others. Additionally, 18% of respondents reported they were in fear of contracting and 7% of spreading COVID-19. It is important to recognize these stressors and to consider their effect on the workforce. DSPs may benefit from access to counseling and support, as has been recommended for other direct support workers in other sectors (Clarke et al., 2020).

Staffing challenges

Respondents reported that staffing challenges continued to be a significant problem for their organization. Sixty-two percent reported knowing of staff who left their jobs due to the COVID-19 pandemic. They stated coworkers were no longer working due to family reasons (21%), fear of becoming infected with COVID-19 (18%), childcare issues (18%), needing to quarantine due to COVID-19 exposure (12%), testing positive for COVID-19 (12%), fear of infecting others (7%), and other reasons (21%). Except for testing positive for COVID-19, these percentages are lower than in the initial survey, where 34% cited fear of becoming infected, 25% listed childcare issues, and 13% noted fear of infecting others. In the initial survey, 9% cited testing positive for COVID-19 as a reason for leaving; this was higher at the 12-month follow-up survey. The 6-month survey results were similar to those from the 12-month survey. Intentional programs and ­­­strategies must be developed and used to promote entry into this workforce because high vacancies have always been an issue in the field. A worsening of this due to COVID-19 makes make what was already a serious problem even more difficult.

Exposure to and diagnosis of COVID-19

Respondents were asked about their exposure to and diagnosis of COVID-19. Over half (57%) said they had been exposed to COVID-19, and 19% said they had been diagnosed with COVID-19. The number of respondents who had supported people who had been diagnosed with COVID-19 increased significantly since the previous surveys in which 91% (initial survey) and 59% (6-month follow-up survey) of respondents had not supported anyone diagnosed with COVID-19. At the time of the 12-month follow-up survey, 22% of respondents had supported 1-2 people diagnosed with COVID-19, 18% supported 3-5 people, 9% supported 6-10 people, and 7% supported 11 or more people. Only 44% of respondents had not supported someone diagnosed with COVID-19. These findings make it clear that respondents take significant risks in their roles of supporting people with IDD. People with IDD are at great risk of getting COVID-19 compared to others in the population, and many die from it (Gleason et al., 2021). As such the people who provide their support need to be identified and paid as essential workers as long as the pandemic continues. This is important information for preparing for future national crises or pandemics.

Safety measures and PPE

Nearly all (97%) respondents reported some level of safety measures established by their employers. Overall, there was greater adherence to safety measures at the 12-month survey, including enforcement of social distancing practices, 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 initial survey, 36% in 6-month follow-up survey, 43% 12-month follow-up survey). While personal protective equipment (PPE) was in short supply at the beginning of the pandemic, a year and a half later 91% of respondents have enough PPE; however, 20% have to pay for it out of pocket.

Vaccination

Twenty-six percent of the 12-month follow-up survey respondents were not vaccinated at the time the survey was fielded. Vaccine hesitancy is pervasive in the United States. In December 2020, 48% of the population was not vaccinated (NPR, 2021). There were several reported reasons for not getting vaccinated including waiting for FDA approval, belief systems against vaccination, fear it is unsafe, costs, and others. There was also a clear pattern of vaccine take up falling off in the month of April 2021. 

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

There were significant differences between respondents of different race groups with respect to pre-pandemic hourly wage. DSPs identifying as Black/African American made, on average, $0.69 per hour less than those identifying as Other ($14.57). A similar pattern was seen in the 6-month follow-up survey where DSPs identifying as Black/African American made, on average, $13.57, which was $0.41 and $0.62 less per hour than White ($13.98) and those identifying as Other ($14.19) DSPs. Additionally, at the 6-month follow-up survey, White DSPs made, on average, $0.21 less per hour than Other DSPs, a significant difference not seen at the 12-month follow-up survey. There were significant differences in pre-pandemic wages between those who were and were not of Latinx descent. Those of Latinx descent made, on average, $14.30, which was $0.39 more per hour than those not of Latinx descent ($13.91). There were significant differences between race groups and current hourly wages, too. DSPs identifying as Black/African American made, on average, $0.57 per hour less than those identifying as White ($14.70) and $0.79 per hour less than those identifying as Other ($14.92). These wage disparities need to be further explored to better understand why they exist and what actions will need to be taken to reduce them.

There were also significant differences between race groups and the number of additional hours worked weekly due to the COVID-19 pandemic. A significantly higher percentage of respondents identifying as White (40%) worked no additional hours compared to Black/African Americans (34%) and Other (31%). Respondents identifying as White (27%) also had a significantly higher percentage of working 1-15 additional hours compared to Black/African Americans (24%). Black/African American (10%) respondents had a significantly higher percentage of working 31-40 hours weekly compared to White (7%) respondents, and both Black/African American (21%) and Other (23%) respondents had significantly higher percentages of working 40 or more additional hours a week due to COVID-19. Those who were and were not of Latinx descent and number of additional hours worked weekly due to Covid-19.

The wage differences between Black/African American respondents and White/Other respondents and the reality that they were also more likely to be the primary wage earner in their household and had lower household incomes likely contributes to their need to work more hours. These disparities need additional exploration and actions need to be identified and taken to remediate them.

There were also significant differences between race groups and whether their work life status had changed since the beginning of the COVID-19 pandemic. A significantly higher percentage of respondents identifying as Black/African American (8%) said life was much better compared to White (6%) respondents. White (9%) and Other (10%) respondents had significantly higher percentages of feeling life was much worse than Black/African American (5%) respondents. It is difficult to understand what underlies the report from Black/African Americans that their work life was much better and from White and Other respondents that theirs were much worse. Clearly respondents faced many changes in their lives and these likely contributed to their experiences and perceptions. For example, for some people working more hours might be viewed as a positive because it means more money is coming into the household, for others the pressure of working more or less hours could be viewed as very stressful.

Setting Size and Exposure to COVID-19

There were significant differences between the setting type where respondents worked the majority of their time and the percent of respondents exposed to COVID-19 and the number of people they supported who had a COVID-19 diagnosis. Over half (57%) of respondents were exposed to COVID-19. Respondents working in agency/facility sites (62%) and community job/employment sites (67%) had significantly higher percentages of supporting individuals with COVID-19 diagnoses compared to those in family or individual homes (41%). Respondents working in family or individual homes had a significantly higher percentage of not supporting any people with a COVID-19 diagnosis. Individuals working in community job/employment sites, family or individual homes, and agency/facility sites all differed significantly from each other with respect to supporting 1-2 people with a COVID-19 diagnosis (29%, 23%, and 20%, respectively). Respondents working in family or individual homes had a significantly lower percentage of supporting 3-5 people (12% vs. 20% for agency/facility and 23% community job/employment sites) with a COVID-19 diagnosis. Individuals working in community job/employment sites, family or individual homes, and agency/facility sites all differed significantly from each other with respect to supporting 6-10 people with a COVID-19 diagnosis (8%, 4%, and 12%, respectively). Respondents working in family or individual homes had a significantly lower percentage (2%) 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 8% of respondents reported that the people they support showed no negative consequences from the social isolation they have endured. However, for nearly all of the consequences of social isolation also reported in the initial and the 6-month follow-up survey, the percentages decreased slightly over time: boredom went from 80% to 71% to 68%, mood swings/depression from 57% to 51% to 49%, behavior issues from 52% to 48% to 48%, and loneliness from 48% to 44% to 43%. The reason for the decrease in negative consequences may be the result of an increase in social interactions. As reported in the initial survey, people supported were allowed to see family and friends in person often (10%), sometimes (10%), seldom (16%), and never (64%). In the six-month follow-up survey, often increased to 18%, sometimes to 26%, seldom to 29%, and never decreased to 27%. And, by the 12-month survey, 48% were allowed in-person visits often, 34% sometimes, 12% seldom, and 6% never.

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 officially identified as essential workers in order to retain DSPs in their jobs. Some DSPs left work to care for children or other family members. Access to essential worker status and pay may give DSPs childcare and financial support needed to remain in their jobs. An important 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 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. Well over half of the workforce has supported people who were COVID-19 positive and over a third have supported more than three individuals with IDD who had COVID-19. Yet 26% of this sample reported that they were not vaccinated. When vaccines were first available many employers organized vaccine clinics or developed partnerships with local businesses to ensure their staff had access to vaccination. However, there was a sharp decline beginning in April 2021 of staff getting vaccinated. New well-organized and targeted vaccination campaigns for DSPs need to be developed and incentives provided for this workforce to get vaccinated. Vaccinations need to be made available free of charge to all DSPs. Educational materials that show DSPs their high risk of exposure and respond to their reasons for being hesitant about vaccines need to be developed as well. Employers need to share with their peers successful strategies in getting DSPs to agree to become vaccinated.

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 comprises single mothers with children (PHI, 2019; Hewitt et al., 2019). Access to childcare ensures that DSPs can continue coming to work.

Wage increases for essential workers commensurate with the increased level of exposure. Direct support depends largely on human interaction, placing workers at increased risk for contracting COVID-19. Only 27% of respondents indicated they were paid higher wages during the pandemic and 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.

Access to career ladders that lead to increased skills and compensation. Seventy-one percent of respondents indicated they were primary wage earners in their household, earning an average of $14.18 per hour prior to the pandemic. This workforce needs access to career ladders and credentialing programs that result in increased wages and access to affordable benefits. Credentialing programs provide opportunities for DSPs to increase their skills, resulting in the provision of higher quality supports and providing a clear and equitable framework on which pay increases can be grounded.

Create systems-level pipelines and incentives to enter this workforce. Vacancy rates have historically been high in this industry as have turnover rates. During the pandemic many DSPs lost their jobs due to layoffs or furloughs and others left the field for personal or safety reasons. This retrenchment will most likely have longer-term effects on the workforce. Creating intentional pipelines through educational and workforce development programs are needed to ensure vacancies in the developmental disability industry can be filled.

Professional recognition and wage equity for direct support. Direct support workers have always provided critical, essential supports. The average wage of $14.18 per hour for respondents prior to the pandemic – and only $12.36 nationally (National Core Indicators, 2020) – is not reflective of the skilled nature of the work. Moreover, this study showed that Black/African American DSPs made significantly lower hourly wages than White/Other groups. These disparities must be explored and resolved. All DSPs need to make a livable wage and have access to affordable healthcare benefits. They should not have to work multiple jobs or excess overtime to be able to live above the poverty line.

Moving Forward – What is Needed for People with IDD

Prioritize people with IDD living in the community in the administration of vaccinations. As essential workers, DSPs were among healthcare professionals who received vaccinations early. People with IDD living in long-term care facilities were also prioritized as a vulnerable population. People with IDD who are living independently in the community or with family must also be a priority for COVID-19 vaccinations.

People with IDD need education and training on handwashing, hygiene, and social distancing. While 71% of respondents reported that people with IDD were good or very good at following social distancing practices, 29% were reportedly fair or poor at this. This was an improvement from 58% and 42% in the initial and 6-month follow-up surveys. Some respondents reported that the people they supported had difficulties understanding the changes and restrictions to their lifestyle resulting from the COVID-19 pandemic. People with IDD need access to ongoing, effective education and training on health and safety practices. Efforts to identify effective instruction using universal design for learning strategies should be tested and materials disseminated and implemented.

Ensure access to technology for people with IDD that allows social interaction with others. Many respondents reported boredom, loneliness and depression among the people they support related to lifestyle changes from the COVID-19 pandemic. Improvements were made in the percentage of people who were never allowed to see friends and family (6%) from the initial survey (64%) and the 6-month follow-up survey (27%). Technology and other forms of safe socializing are a plausible explanation for this improvement. Investments in technologies that help people have greater control over their lives and access to virtual social interaction can help them maintain friendships and social contacts in future waves of COVID-19 or other pandemics and crises.

Develop evidence-based strategies for accessing and using telehealth. In addition to mental health issues, some respondents reported that people supported had increased difficulties managing their diet and pain. Access to telehealth could make it easier to access supports and help alleviate these issues. Work is needed within the medical community to eliminate disparities and ensure people get the healthcare they need.

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 be involved in decisions affecting them. Person-centered services seek to balance people’s safety with their preferences. Alongside of training on safety, people who receive supports and their families need to have a say in how and when they participate in community activities.

Conclusion

A national emergency was declared on March 13, 2020 concerning the COVID-19 pandemic. More than one year later, the crisis remains. This study sheds light on the work experiences of DSPs during this challenging time. The study results 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 high turnover, high vacancies, low wages, and the effects these challenges have on the lives of people with intellectual and developmental disabilities be addressed through significant policy change. Vaccination campaigns must be developed to increase the percentage of employees in this essential workforce who are fully vaccinated. Additionally, the equity issues identified for Black/African American DSPs with regard to wage equity must be resolved.

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