Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated and Unvaccinated Direct Support Professionals

Abstract

Direct support professionals (DSPs) may be at increased risk of contracting COVID-19 due to the proximal nature of their work. In response to the pandemic a three-wave study was launched to understand experiences of DSPs. An on-line national survey found that 70% of DSPs were vaccinated. Vaccinated DSPs were older and had higher education levels. Among the unvaccinated, 56% reported concerns about COVID-19 vaccination safety. Unvaccinated DSPs were more likely to report that the people they supported were also unvaccinated. Encouraging DSPs to get vaccinated to protect the people they support is essential. Paid time off, arranging for vaccinations, and setting an expectation for vaccination may encourage vaccination uptake among DSPs.

Services provided by the direct support workforce are growing in demand (Public Health Institute, PHI, 2021). Although there is no formal occupational classification of direct support professional (DSP), the broad direct support workforce field typically includes home care workers (2.4 million), residential care aids (675,000), nursing assistants in nursing homes (527,000), and more (Pettingell et al., 2022; PHI, 2021). It is estimated that there are 1.3 million DSPs in the United States (President’s Committee for People With Intellectual Disabilities, 2018). The common denominator across these different roles is providing crucial support to individuals with disabilities that maximizes the autonomy and quality of community living for the people they support. The wide array of DSP responsibilities includes but is not limited to supporting people with basic needs such as eating, bathing, and toileting, food preparation, household chores (e.g., laundry), medication management (Musumeci et al., 2021) as well as developing and maintaining relationships, participating in their communities, budgeting and money management, counseling and more (National Alliance for Direct Support Professionals, NADSP, n.d.). DSPs also support people with intellectual and developmental disabilities (IDD) in employment and all aspects community living.

Individuals working in this profession face many difficulties. The physical demands of the DSP role are often combined with the psychological demands of working with people who have behavioral support needs and the mental challenges of working long and inconsistent hours (Hewitt, Pettingell, Bershadsky, et al., 2021; PHI, 2021). Many DSPs also face financial insecurity on top of the job-related stressors mentioned. Previous reports indicate that the 40th percentile of DSPs earned $30,000 a year and that the median hourly pay of all DSPs in 2020 was $13.56 (Musumeci et al., 2021; PHI, 2021). In recent studies researchers found that DSP wages are quite low. The National Core Indicators (NCI) Staff Stability 2019 Survey reported an average hourly DSP wage of $12.36 (NCI, 2020). Hewitt, Pettingell, Kramme, et al. (2021) found a higher average hourly DSP wage, $14.60; however, 66% of their sample had been employed at their primary employer for 36 months or more which may explain the difference in wages. Low pay has caused many DSPs to live in poverty and further contributes to the burnout that has long characterized the field. The wage increases over the last decade have proven far too insignificant to improve financial well-being, especially when accounting for increases in the cost of living. Insurance coverage is another common difficulty faced by many DSPs. National data suggests that most direct support workers (60%) were enrolled in private health insurance. However, 21% receive public coverage such as Medicaid, whereas 14% are not insured (Artiga et al., 2021). When looking at the demographics of the DSP workforce, the professionals come from a variety of backgrounds. A vast majority of the professionals are female (88%); 32% are Black and 16% Hispanic (Musumeci et al., 2021). The median age for this workforce was 47 for home care workers, 37 for residential care aides, and 38 for nursing assistants. Despite the importance of the direct support workforce, the field has long been known for its occupational stress and consistently high turnover rates (Bogenschultz et al., 2014; Hewitt & Larson, 2007; Houseworth et al., 2020; PHI, 2021). For example, Bogenschutz and colleagues (2014) found an annual separation rate of 25% for DSPs and 12% for Frontline Supervisors (FLSs). Wages, access to health insurance, number of part-time employees, staffing ratios, and Medicaid spending have all been associated with DSP turnover (Houseworth et al., 2020).

COVID-19 Pandemic Impact on Workforce

The COVID-19 pandemic exacerbated previous difficulties in the DSP workforce and introduced new concerns. In the nursing homes sector PHI (2021) reported that between January 2020 and July 2021, 654,000 nursing home residents and 582,000 nursing staff were diagnosed with COVID in the United States, whereas nearly 132,000 residents and over 1,700 staff had died from the virus. In addition to the risks of exposure to and becoming ill from COVID-19, many other stressors were added to the work life of DSPs. A recent survey indicated that 16% (3,785 responses) of DSP survey respondents cited short staffing as a significant challenge at the start of the pandemic (Hewitt, Pettingell, Bershadsky, et al., 2021). Short staffing resulted in other concerns such as longer hours, working in different locations, unpredictable scheduling, and lack of support for remaining DSPs. Home and community-based services (HCBS) data indicated that as of August 2021, over a third of states with HCBS sites reported having publicly available data regarding the impact of coronavirus on enrollees and vaccination rates (Watts et al., 2021). Of those sites, two thirds of the represented states reported preexisting staffing troubles and closures of at least one HCBS provider. Shortages following the pandemic produced the most significant effect on in-home and group-home services, whereas closures for social distancing measures produced the largest effect on adult day health and supported employment programs. McCall and colleagues found that 4%, or 168,370 DSPs, were displaced from their jobs within the first 3 months of the pandemic (McCall et al., 2021). Of those displaced, only 9%, or 14,770 workers, re-entered the workforce into any occupation whereas 0% re-entered the workforce into the same occupational group by the end of the first quarter of 2021. The remaining 91%, or 153,610, direct care workers, remained out of the workforce during this period. The DSP workforce faces more staffing challenges during COVID-19 than ever before.

Vaccination Issues in General Public

As of January 2022, approximately 63.6% of the U.S. population is fully vaccinated, and 41% have received their booster (Centers for Disease Control, 2022). Despite the availability of the vaccine to the general public, public perception towards vaccines has varied drastically since its initial availability and continues to change. In a survey measuring intent, perceptions, and reasons against vaccinations in the United States, researchers found that although 38.1% of adults surveyed in September 2020 indicated that they were “not likely” to get the COVID-19 vaccination, the percentage decreased to about 32.1% adults in December 2020 (Nguyen et al., 2021). Other reasons, such as concerns about the side effects and safety of the vaccine and lack of trust in the government, increased. In December, the follow-up survey found that 29.8% of individuals against vaccination voiced concern about vaccine safety, whereas 12.5% did not trust the government (Nguyen et al., 2021). Another study found that vaccine hesitancy was highly correlated with a lack of trust in the scientific community and not with trust in the government’s response to the pandemic (Bagasra et al., 2021).

When looking at racial differences in vaccine hesitancy, researchers found that Asians had the highest level of trust in the scientific community and the highest percentage of individuals who planned to get vaccinated. On the other hand, the American Indian or Alaskan Native (AIAN) group had the least trust in the scientific community and the highest percentage of participants who had no plans of getting vaccinated. However, data suggests that AIAN initially had higher rates of vaccination, due in part to coordination efforts between Tribal health programs, The Indian Health and Urban Indian Organizations (Hill & Artiga, 2021). In early 2021, 32% of the AIAN population had been vaccinated compared to 26% of Native Hawaiian or other Pacific Islander, 19% of White, 16% of Asian, 12% of Black, and 9% of Hispanic populations (Hill & Artiga, 2021). Although these studies indicate that there are myriad factors that contribute to vaccine hesitancy, they also demonstrate that coordinated and targeted efforts to reach underserved communities can be effective.

Vaccination Issues in Direct Support Workforce

At the onset of the pandemic, the DSP workforce did not have the option of working from home. Although virtual support options have emerged throughout the pandemic, most DSPs continue to provide in-person supports. Therefore, it continues to be of critical importance that DSPs are vaccinated, in part because individuals with IDD are at greater risk for both contracting COVID-19 and experiencing worse outcomes. Gleason and colleagues (2021) examined a population of more than 64 million patients from 547 health care organizations. The odds of contracting COVID-19 were 2.6 times higher for someone with intellectual disability than without. However, Davis and colleagues (2021) found that the risk was 60% of the general population in a study of individuals from eight states comprising one third of the U.S. population. Both studies found that for those infected with COVID-19, people with ID were from 2.8 to 5.9 times more likely to die from COVID-19 (Davis et al., 2021; Gleason et al., 2021). Despite the direct nature of DSP work and the increased vulnerability of the client population, vaccine hesitancy continues to persist among caregivers.

Many have speculated about the effect of mandated vaccinations on the direct care workforce. One study on vaccination conditions of employment (COE) implementation in a community nursing home suggested success in mandating vaccinations for staff (Ritter et al., 2021). Before the COE, efforts to increase vaccination included handouts, on-site vaccination clinics, virtual presentations, and individual outreach. This resulted in less than half of the nursing home staff being vaccinated. Three months after the COE, 89.8% (n = 246) of the initial staff were vaccinated. In contrast, 6.9% (n = 17) resigned, and seven staff were exempt due to religious reasons or leave of absence. However, there is evidence that despite reservations about vaccinations, mandates strengthen people’s intentions to get vaccinated (Albarracin et al., 2021). Although hesitancy remains, mandated vaccination and aid from employers appear to be a viable solution for increasing DSP vaccination rates.

Purpose of the Current Study

The purpose of this study was to examine COVID-19 vaccination issues related to DSPs. We compared DSPs who were vaccinated with those who remained unvaccinated to understand if and how they differ in terms of their vaccination experiences and personal and professional characteristics. The research questions included:

1. Do vaccinated and unvaccinated DSPs differ on demographic characteristics?

2. Do vaccinated and unvaccinated DSPs differ in terms of vaccination circumstances of their employer and the people they support?

3. Do vaccinated and unvaccinated DSPs differ on the quality of their work-life?

Method

Instrument

The COVID-19 Direct Support Workforce 12-month Survey was the third in a series of three online surveys. It was launched using the survey platform Qualtrics on June 1, 2021. Information on the survey and access link were posted on our website, sent to our contacts throughout the United States for assistance in distribution, and circulated on social media. The survey closed on July 25, 2021. The survey included items about respondent characteristics, work hours and wages, staffing, COVID-19 safety measures employers had in place, perceptions of the pandemic impact on the people whom the respondents supported, DSP work-life and well-being, vaccinations, and demographics.

Sample

There were 7,366 surveys submitted in Qualtrics. Of those, 13% opened the link but did not answer any items, 11% indicated they were DSPs but left the survey blank or only answered the first three questions, 3% were not DSPs or FLSs, < 1% were duplicate testers, and < 1% did not reside in the United States. This left a usable sample of 5,356 (73%) respondents. Respondents were located in nearly all 50 states, the District of Columbia, Guam, and Puerto Rico. There were four states with no respondents (7%), 33 states or territories (61%) that had 1–100 respondents, nine (17%) had 101–250 respondents, five (9%) had 251–400 respondents, and three (6%) had more than 400 respondents. Three percent of respondents did not provide the state in which they worked. For the purpose of this study, only the 3,674 DSPs who endorsed “yes, fully vaccinated (2 shots of Moderna or Pfizer or 1 shot of Johnson & Johnson)”, “yes partially (1 shot of Moderna or Pfizer)”, or “no, not vaccinated” were included in the analytic sample.

Variables

Demographic Variables

• Region was a single item created to match the U.S. Census regions. The Northeast region included: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont. The Midwest included: Illinois, Indiana, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, North Dakota, South Dakota, Ohio, and Wisconsin. The South included: Alabama, Arkansas, Delaware, the District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, Oklahoma, North Carolina, South Carolina, Tennessee, Texas, Virginia, and West Virginia. The West included: Alaska, Arizona, California, Colorado, Hawaii, Idaho, Montana, New Mexico, Nevada, Oregon, Utah, Washington, and Wyoming.

• Age was a continuous measure.

• Gender Identity was a single item with four options: man including transgender man, woman including transgender woman, nonbinary, and prefer to self-describe.

• Race was a single item with six options: American Indian or Native American, Asian, Black or African American, White, Some Other Race, or Two or More Races. Race groups were collapsed into Black or African American, White, and Other to explore the relationship with DSP vaccination 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.

• Ethnicity was a single item with two options: Yes, and No I am not of Hispanic, Latino, or Spanish origin.

• Education Level was a single item with six options: less than a high school diploma, a high school diploma or GED, a 2-year degree, some college, a 4-year degree, and postgraduate education.

• Household Income was a single item with six options: $14,999 or less, $15,000 to $21, 999, $22,000 to $39,999, $40,000 to $99,999, $100,000 to $200,000, and over $200,000.

• Setting Worked In was a single item with four options: agency or facility, family or individual home, community employment or job site, and another site not included in the options.

Vaccination Variables

• Employer Requires Vaccination was a single item with two options: yes and no.

• Employer Offers Financial Incentive for Vaccination was a single item with two options: yes and no.

• Employer Offers Paid Time Off (PTO) for Vaccination was a single item with two options: yes and no.

• When People Supported Got Vaccinated was a single item with eight options: December 2020, January 2021, February 2021, March 2021, April 2021, May 2021, June 2021, and July 2021.

• Number of People With Intellectual and Development Disabilities (IDD) Supported Who Are Vaccinated was a single item with four options: none, fewer than half of the people you support, more than half of the people you support, and all.

Analysis

All analyses were conducted in SPSS version 27 (IBM Corp, 2020). Frequency distributions were used to provide descriptive statistics. Crosstabulation tables with Chi-square tests (χ²) were run to examine differences between vaccinated DSPs (fully or partially) and unvaccinated. Analyses were evaluated at alpha level (α = 0.05).

Results

Descriptive Results

Demographics

Seventy percent of the 3,674 DSPs were fully vaccinated (two shots of Moderna or Pfizer/BioNTech or one shot of Johnson & Johnson), partially vaccinated (2%), or not vaccinated (28%) in the analytic sample. The average age was 45 years (SD = 14 years, median = 46 years). Over four fifths (82%) identified as women, including transgender women, 16% as men, including transgender men, and 1% nonbinary and preferred to self-describe, respectively. Nearly three fourths (71%) identified as White, 20% as Black or African American, 2% as American Indian or Native American, 1% as Asian, 2% as another race not listed as an option, and 4% as two or more races. Additionally, 6% came from a Hispanic, Latino, or Spanish heritage. Two percent had less than a high school diploma, 27% had a high school diploma or GED, 15% had a 2-year degree, 30% had some college, 18% had a 4-year degree, and 8% had postgraduate education. Over half (59%) of DSPs provided most of their services in agency or facility sites, 31% in family or individual homes, 8% in community employment or job sites, and 2% in other settings. Nearly two thirds (65%) worked for their primary employer for more than 36 months, 10% between 24 to 36 months, 11% between 12 to 24 months, 8% between 6 to 12 months, and 6% less than 6 months. Five percent of DSPs had an annual household income of $14,999 or less, 12% $15,000 to $21, 999, 37% $22,000 to $39,999, 39% $40,000 to $99,999, 6% $100,000 to $200,000, and 1% over $200,000. Geographically, nearly half (43%) were located in the Midwest, 32% in the South, 17% in the Northeast, and 8% in the West.

Vaccination Experiences of DSPs

There were 3,674 DSPs who answered the question about being vaccinated. Nearly three fourths (72%) were fully (two shots of Moderna or Pfizer/BioNTech or one shot of Johnson & Johnson) or partially vaccinated (one shot of Moderna or Pfizer), and 28% were not vaccinated.

For DSPs who were vaccinated, 78% had received their first vaccination shot by March 2021. Concerning where DSPs received their first vaccination shot, 31% were at their worksite or employer office, 18% in a pharmacy or doctor’s office, 27% at mass vaccination sites, 14% at pop-up or community vaccination clinics, and 10% at another location. Themes from “other” responses included church, health department, and hospital. Nearly half (46%) had their employer arrange and pay for their vaccination, 14% had an employer who only arranged the vaccination, 3% had their employers only pay for their vaccination, and 36% had employers who neither arranged nor paid for their vaccination (see Table 1).

Table 1.

Vaccination Experiences of Vaccinated Direct Support Professionals

Vaccination site	N	%
Worksite or employer office	807	31.0
Pharmacy or doctor’s office	486	18.0
Mass vaccination site	719	27.0
Pop-up or community vaccination clinic	366	14.0
Another location	272	10.0
Total	2,650	100.0
Employer arranged and paid for vaccination
Arranged and paid for vaccination	1,225	46.0
Arranged for vaccination only	371	14.0
Paid for vaccination only	86	3.0
Neither arranged nor paid for vaccination	966	37.0
Total	2,648	100.0

DSPs who were unvaccinated were asked why they were hesitant to get the vaccine. As seen in Table 2, 56% felt the vaccine was not safe, 23% did not feel they needed it, 22% did not believe in the worth of the COVID-19 vaccine, 1% had difficulty accessing the place or time the vaccine was offered, 1% were not eligible at the time of the survey to be vaccinated, less than 1% said that cost was a barrier, and 21% had other reasons for not getting vaccinated. Common themes from “other” reasons included: vaccinations being against beliefs/spiritual beliefs, allergies, being 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 Federal Drug Administration (FDA) approval, not enough research/need more research, pregnant/breastfeeding/fertility issues, and other health issues.

Table 2.

Unvaccinated Direct Support Professionals Reasons for Not Getting Vaccinated

Reasons for not getting vaccinated	N	%
Do not feel it is safe	569	56.0
Do not feel they need it	233	23.0
Do not believe in the worth of the COVID-19 vaccine	224	22.0
Difficulty accessing the place or time vaccine offered	11	1.0
Not eligible	9	1.0
Cost	3	< 1.0
Other	216	21.0

Note. Respondents could choose more than one option.

Employer’s Role and Vaccination Status of People Supported

Whether they were vaccinated or not, DSPs were also asked a series of questions related to their employer’s role around vaccinations and the vaccination status of the people they supported. For employers, only 8% required DSPs and their coworkers to be vaccinated to continue being employed. One quarter (25%) worked for an employer or in a state that offered a financial incentive for employees to get vaccinated. Twenty-one percent of DSPs worked for employers who offered paid time off (PTO) for employees to get vaccinated (see Table 3). DSPs were also asked two questions about the vaccination status of the people they supported. Six percent of DSPs reported that the people whom they support began to be vaccinated in December 2020, 25% in January 2021, 29% in February 2021, 23% in March 2021, 11% in April 2021, 5% in May 2021, 1% in June 2021, and less than 1% in July 2021. Five percent of DSPs reported the people with IDD that they supported were not vaccinated, 6% said fewer than half of the people with IDD they supported were vaccinated, 34% reported that more than half of the people with IDD they supported were vaccinated, and 55% reported that all of the people supported with IDD were vaccinated (see Table 3).

Table 3.

Direct Support Professionals’ Experiences Around Vaccination Circumstances With Employers, People Supported, and Quality of Work-Life

Experiences around vaccination circumstances with employers	N	%
Employer requires vaccination to continue to be employed
Yes	278	8.0
No	3,353	92.0
Total	3,631	100.0
Employer or state offers a financial incentive for employee vaccination
Yes	697	25.0
No	2,080	75.0
Total	2,777	100.0
Employer offers paid time off (PTO) for employees to get vaccinated
Yes	526	21.0
No	1,936	79.0
Total	2,462	100.0
Experiences around vaccination circumstances with people supported	N	%
When people supported began to be vaccinated
December 2020	167	6.0
January 2021	698	25.0
February 2021	835	29.0
March 2021	663	23.0
April 2021	317	11.0
May 2021	142	5.0
June 2021	19	1.0
July 2021	7	<1.0
Total	2,848	100.0
People with intellectual and developmental disabilities who are vaccinated against COVID-19
None	167	5.0
Fewer than half of the people supported	190	6.0
More than half of the people supported	1,054	34.0
All	1,692	55.0
Total	3,103	100.0
Quality of work life since the beginning of the COVID-19 pandemic	N	%
Much better	248	7.0
Better	695	19.0
The same	1,533	42.0
Worse	889	24.0
Much worse	293	8.0
Total	3,658	100.0

Quality of Work Life

Finally, DSPs were asked about the quality of their work-life now as compared to the beginning of the COVID-19 pandemic. Seven percent indicated it was much better, 19% better, 42% the same, 24% worse, and 8% much worse (see Table 3).

Comparisons of Vaccinated Versus Unvaccinated DSPs

Demographic Comparisons Between Vaccinated and Unvaccinated DSPs

Demographic variables were examined for DSPs by their vaccination status. Variables of interest included region of the United States in which they lived, age, gender identity, race, ethnicity, education level, household income, and type of setting in which the DSP worked.

As seen in Table 4, there were statistically significant differences between DSPs who were vaccinated and those who were not on gender identity, χ²(3) = 25.655, p < 0.001. A significantly higher percentage of vaccinated DSPs identified as men (18% vs. 11%), whereas a higher percentage of unvaccinated DSPs identified as women (88% vs. 80%).

Table 4.

Demographic Comparisons by Direct Support Professional (DSP) Vaccination Status

Variable	Vaccinated DSPs		Unvaccinated DSPs
Region	N	%	N	%	p value
Northeast	457	18.0a	145	15.0b	0.087
Midwest	1,109	43.0 a	443	45.0 a
South	798	31.0 a	333	33.0 a
West	206	8.0 a	72	7.0 a
Total	2,570	100.0	993	100.0
Gender Identity
Man (including transgender man)	440	18.0 a	106	11.0 b	<0.001
Woman (including transgender woman)	2,000	80.0 a	821	88.0 b
Non-binary	33	1.0 a	5	1.0 a
Prefer to self-describe	16	1.0 a	5	1.0 a
Total	2,489	100.0	937	100.0
Race
Black or African American	494	20.0 a	166	19.0 a	0.599
White	1,736	71.0 a	625	71.0 a
Other	214	9.0 a	84	10.0 a
Total	2,444	100.0	875	100.0
Hispanic, Latino, or Spanish Background
Yes	139	6.0 a	49	6.0 a	0.844
No	2,285	94.0 a	833	94.0 a
Total	2,424	100.0	882	100.0
Education Level
Less than high school	43	2.0 a	23	2.0 a	<0.001
High school diploma or GED	634	25.0 a	321	33.0 b
Some college	369	14.0 a	153	16.0 a
2-year degree	752	29.0 a	306	32.0 a
4-year degree	526	21.0 a	120	12.0 b
Postgraduate education	220	9.0 a	43	5.0 b
Total	2,544	100.0	966	100.0
Annual Household Income
$14,999 or less	90	4.0 a	55	7.0 b	<0.001
$15,000 to $21,999	232	10.0 a	132	15.0 b
$22,000 to $39,999	847	37.0 a	332	39.0 a
$40,000 to $99,999	928	41.0 a	286	34.0 b
$100,000 to $200,000	153	7.0 a	44	5.0 a
Over $200,000	15	1.0 a	3	<0.1 a
Total	2,265	100.0	852	100.0
Type of Work Setting
Agency or facility	1,553	59.0 a	625	62.0 a	0.085
Family or individual home	823	31.0 a	310	31.0 a
Community employment or job site	218	8.0 a	68	7.0 a
Other site	62	2.0 a	14	1.0 a
Total	2,656	100.0	1,017	100.0
Age (average)	47 years		41 years		<0.001

Note. Subscript letters ^a and ^a in a row indicate column proportions do not differ significantly at the 0.05 level. Subscript letters ^a and ^b in a row indicate column proportions differ significantly at the 0.05 level. P-values in bold represent relationships that are significant at the 0.05 level.

Vaccinated DSPs were significantly older (M = 47 years; SD = 14 years), on average, than unvaccinated DSPs (M = 41 years; SD = 13 years), t(3,514) = −4.809, p < 0.001. There were statistically significant differences between DSPs who were vaccinated and those who were not on education level, χ²(5) = 63.790, p < 0.001. DSPs who were vaccinated had significantly higher percentages with 4-year degrees (21% vs. 12%) and postgraduate education (9% vs. 5%).

Statistically significant differences between vaccinated and unvaccinated DSPs were also present for annual household income, χ²(5) = 35.438, p < 0.001. Vaccinated DSPs had significantly higher percentages in the $40,000 to $99,999 (41% vs. 34%) and $100,000 to $200,000 (7% vs. 5%) annual income brackets. Approximately the same percentage of vaccinated DSPs working in agency or facility settings (59% vs. 62%) and nearly the same percentages in community employment or job sites (8% vs. 7%) and other worksites (2% vs. 1%) were vaccinated (see Table 4). There were no significant differences between vaccinated and unvaccinated DSPs with respect to region, race, ethnicity, and type of work setting.

Comparisons of Employer’s Role and Vaccination Status of People Supported Between Vaccinated and Unvaccinated DSPs

Vaccination experiences with employers and people whom the DSPs support and DSP quality of work-life since the beginning of the pandemic were examined for DSPs by vaccination status. Variables of interest included employers requiring vaccination to continue working, employer or state offering a financial incentive for employees getting vaccinated, employers offering paid time off (PTO) so employees can get vaccinated, the timing of people supported getting vaccinated, the number of people supported who were vaccinated, and the DSP quality of work-life since the beginning of the pandemic.

As seen in Table 5, there were statistically significant differences between DSPs who were vaccinated and those who were not with employers requiring COVID-19 vaccination to continue their employment, χ²(1) = 66.138, p < 0.001. Vaccinated DSPs had a significantly higher percentage of working for an employer who required COVID-19 vaccinations to continue being employed (10% vs. 2%). There were statistically significant differences between vaccinated and unvaccinated DSPs who worked for an employer or lived in a state with a financial incentive for employees to get vaccinated, χ²(1) = 7.129, p = 0.008. Unvaccinated DSPs had a significantly higher percentage of working in a state or for an employer who offered a financial incentive for employees to get vaccinated (29% vs. 24%). There were also statistically significant differences between DSPs who were vaccinated and those who were not on whether their employer offered PTO for employees to get vaccinated, χ²(1) = 12.759, p < 0.001. A significantly higher percentage of vaccinated DSPs worked for an employer who offered PTO for employees to get vaccinated (23% vs. 16%).

Table 5.

Vaccination Experiences With Employers, People Supported, and Quality of Work-Life Comparisons by Direct Support Provider (DSP) Vaccination Status

Experiences around vaccinations with employers	Vaccinated DSPs		Unvaccinated DSPs		p value
Employer requires vaccination to continue to be employed	N	%	N	%
Yes	259	10.0a	19	2.0b	<0.001
No	2,361	90.0 a	992	98.0 b
Total	2,620	100.0	1,011	100.0
Employer or state offers a financial incentive for employee vaccination	N	%	N	%
Yes	503	24.0 a	194	29.0 b	0.008
No	1,605	76.0 a	475	71.0 b
Total	2,108	100.0	669	100.0
Employer offers paid time off (PTO) for employees to get vaccinated	N	%	N	%
Yes	429	23.0 a	97	16.0 b	<0.001
No	1,433	77.0 a	503	84.0 b
Total	1,862	100.0	600	100.0
Experiences around vaccinations with people supported	Vaccinated DSPs		Unvaccinated DSPs		p value
When people supported began to be vaccinated	N	%	N	%
December 2020	113	5.0 a	54	8.0 b	0.005
January 2021	566	26.0 a	132	20.0 b
February 2021	646	30.0 a	189	29.0 a
March 2021	509	23.0 a	154	23.0 a
April 2021	227	10.0 a	90	14.0 b
May 2021	108	5.0 a	34	5.0 a
June 2021	15	1.0 a	4	1.0 a
July 2021	5	<1.0 a	2	<1.0 a
Total	2,189	100.0	659	100.0
People with intellectual and developmental disabilities who are vaccinated against COVID-19	N	%	N	%
None	97	4.0 a	70	8.0 b	<0.001
Fewer than half of the people supported	137	6.0 a	53	6.0 a
More than half of the people supported	766	34.0 a	288	35.0 a
All	1,274	56.0 a	418	51.0
Total	2,274	100.0	829	100.0
Quality of work life since the beginning of the COVID-19 pandemic	N	%	N	%	p value
Much better	193	7.0 a	55	5.0 b	0.004
Better	526	20.0 a	169	17.0 b
The same	1,111	42.0 a	422	42.0 a
Worse	620	24.0 a	269	27.0 b
Much worse	195	7.0 a	98	10.0 b
Total	2,645	100.0	1,013	100.0

Note. Subscript letters ^a and ^a in a row indicate column proportions do not differ significantly at the 0.05 level. Subscript letters ^a and ^b in a row indicate column proportions differ significantly at the 0.05 level. P-values in bold represent relationships that are significant at the 0.05 level.

Statistically significant differences between vaccinated and unvaccinated DSPs were also present regarding when the people the DSPs supported began to get vaccinated, χ²(7) = 20.210, p = 0.005. Vaccinated DSPs had significantly higher percentages of the people they supported getting vaccinated in January 2021 (26% vs. 20%). Unvaccinated DSPs had significantly higher percentages of people with IDD whom they supported get vaccinated in December 2020 (8% vs. 5%) and April 2021 (14% vs. 10%). Vaccinated DSPs had a significantly higher percentage of all the people with IDD they supported being vaccinated (56% vs. 51%), whereas unvaccinated DSPs had a significantly higher percentage of none of the people with IDD they supported being vaccinated (8% vs. 4%). These differences were statistically significant, χ²(3) = 23.538, p < 0.001, (see Table 5).

Comparison of Quality of Work Life Between Vaccinated and Unvaccinated DSPs

There were statistically significant differences between vaccinated and unvaccinated DSPs regarding their work-life status compared to the beginning of the COVID-19 pandemic, χ²(4) = 15.513, p = 0.004. Vaccinated DSPs had significantly higher percentages of feeling their work-life was much better (7% vs. 5%) or better (20% vs. 17%) than the beginning of the COVID-19 pandemic than unvaccinated DSPs. Unvaccinated DSPs had a higher percentage of feeling their work-life was much worse (10% vs. 7%) since the beginning of the COVID-19 pandemic than vaccinated DSPs (see Table 5).

Discussion

As noted previously, individuals with IDD may be more likely to contract COVID-19 and are more likely to die from COVID-19 if they contract it (Davis et al., 2021; Gleason et al., 2021). This underscores the important role that DSPs play in ensuring the health and wellness of individuals with IDD. At the time of this survey, most of the respondents were vaccinated (70%), a higher proportion than the general population (60%). Of those vaccinated, most (78%) had received their first vaccination by March of 2021. This may demonstrate that most DSPs understood the importance of vaccinations to keeping themselves, their families, and the people they support safe. It may also reflect advocacy efforts around elevating the DSPs to early vaccination priority status as essential workers. It is important to note that DSPs who were vaccinated also reported that more of the people they supported were vaccinated. More research would be needed to understand if this reflects the important role DSPs play in providing information to the people they support; if it was related to other factors such as agency culture; or, if other larger state and regional factors came into play such as geography and state differences in vaccination rates, in general.

There were some key demographic differences in vaccinated versus unvaccinated DSPs. DSPs who were vaccinated were somewhat older than those who were not vaccinated (47 vs. 41 years of age). Vaccinated DSPs were also more likely to have higher education levels, which mirrors the general population’s experience. There was no difference in vaccination rates by race or ethnicity in this sample. This differs from the general population in which there have been differences in vaccine uptake by race and ethnicity. Early in the pandemic, vaccination rates were higher among White individuals, however, as the pandemic has continued, the differences in rates across ethnic groups have narrowed. In January of 2022, the Kaiser Family Foundation reported that 60% of White and Hispanic individuals have at least one dose, 54% of Black individuals, and 80% of Asian individuals report at least one dose of a COVID-19 vaccine. The authors of this report also note that the uptake in vaccinations in the White population is declining, but is increasing in other populations (Ndugga et al., 2022). It may be that the messages sent to DSPs about the importance of being vaccinated accounts for the similar vaccination rates across the various groups.

For the 28% of DSPs who were not vaccinated, the reasons for not getting vaccinated were similar to that of the general population. More than half (56%) reported being concerned about the vaccine’s safety. It is important to note that this survey was deployed before the full FDA approval of the Pfizer/BioNTech vaccine in August 2021 which may have convinced some DSPs to become vaccinated.

The effects of incentives on vaccination status yielded some mixed results. Vaccinated DSPs were more likely to report to have employers who offer PTO for vaccinations which is not a surprising finding. However, unvaccinated DSPs were more likely to report having access to financial incentives for vaccines from their employer or state. There are some factors which may explain this finding. As vaccines were being developed and distribution of the vaccine was being planned, some expressed concern that the financial incentives might be negative, particularly in certain populations (Robertson et al., 2021). In a survey of 1,000 adults conducted in December of 2020, Robertson and colleagues (2021) found that financial incentives between $1,000 and $2,000 were likely to be effective in increasing the willingness to be vaccinated in the general population. However, incentives were potentially less likely to be successful for Republicans than for the general population. Further, large financial incentives decreased the willingness to consider a vaccine for Black and Latino Americans (Robertson et al., 2021), perhaps stemming from the distrust of the health care system. It may that large financial incentives raised concerns about vaccines being risky if large incentives were offered.

Another study conducted in the same timeframe found that about 14% of the U.S. population reported that they would only get vaccinated if financially compensated (Carpio et al., 2021). Half would require a minimum compensation of $500 to consider vaccination (Carpio et al., 2021). It is important to note that both of these studies are about intentions to get vaccinated and were conducted before vaccinations were readily available to anyone who wanted one and offered incentive amounts that were higher than most incentives that were typically available for vaccinations. Little has been published about the actual effectiveness of incentives, particularly with DSPs. One unpublished study found that financial incentives did not increase vaccine uptake in hesitant populations (Chang et al., 2021). The authors reported that financial incentives may have had a perverse effect for people who were over 40 and who voted Republican in the 2020 election (Chang et al., 2021). Further, negatively framed public health messages served as a disincentive for men and those under 40 if the person delivering the message (via video) was discordant by gender (Chang et al., 2021).These findings have important public health implications regarding vaccine hesitancy including ensuring that public health messages are tailored to the audience in terms of both message and messenger and finding the right balance of financial incentives that encourage people to participate without increasing people’s concerns about personal risk.

Nearly a quarter of DSPs didn’t believe that they needed the vaccine or didn’t see value in it. There needs to be increased messaging that is culturally accessible about the need for the vaccine to protect others that may be more vulnerable and that it isn’t merely about personal risk from COVID-19. Because of the lack of trust in the medical communities in some populations, the Association of University Centers on Disabilities AUCD and NADSP addressed the issue of vaccine confidence across diverse communities through various outreach activities funded by the CDC (https://www.kff.org/coronavirus-covid-19/issue-brief/latest-data-on-covid-19-vaccinations-by-race-ethnicity/; https://nadsp.org/covid-19-vaccine-hesitancy-campaign/). As noted previously, the risk of COVID-19 to people with IDD means that having a vaccinated workforce is critical to the health of the vulnerable population for whom DSPs provide support.

Given the risk of COVID-19 to the health of individuals with IDD, it’s essential to implement policies to encourage DSPs to get vaccinated to protect the people they support. The different experiences reported by the vaccinated versus unvaccinated DSPs in this study highlight some of the approaches that need to be implemented systemwide:

1. Service providers should set an expectation that the people who provide supports receive vaccines. Sending a clear message about the importance of vaccines to the health and safety of the people supported is vital. Messaging that provides clear and straightforward information about critical areas in which people are concerned, such as FDA approval, vaccine development, and vaccine safety, must be made available in plain language for the people supported and DSPs (Centers for Disease Control, 2021).

2. Employers should provide PTO for DSPs to receive the vaccine and time off if they experience side effects. Most DSPs are the primary wage earner and make low wages (Hewitt, Pettingell, Bershadsky, et al., 2021; PHI, 2021). Taking unpaid time off from work to receive vaccinations is not financially feasible for many DSPs.

3. Service providers should arrange for vaccinations for their DSPs. When vaccines first became available, many employers of DSPs held vaccination clinics on site or arranged for employees to go to other locations. As the pandemic has gone on and vaccination rates have increased, easy access to vaccinations may have become less common. As such, ongoing efforts to make access to vaccinations easy for DSPs should continue. This could be made possible through assistance with scheduling and transportation to and from community sites or holding vaccination clinics for employees.

4. The messages DSPs have likely received regarding vaccination come from employers or through general population public service announcements. Efforts to tailor messages to DSPs is an important tool to increase vaccination. For example, messages from vaccinated DSPs about their decision to get vaccinated may be effective. In addition, given the diversity of the workforce, it is important that these messages are culturally accessible. The importance of personal relationships is a critical to reducing vaccine hesitancy. Individuals who are concerned about the safety and efficacy of vaccines must have a trusted person to respond to their questions and concerns in a respectful way.

There is much that this study found that needs further exploration. There were many “other” reasons that the respondents provided as to why they were not yet vaccinated. Further exploring vaccine hesitation with unvaccinated DSPs through interviews may bring to light more information about strategies to increase vaccination rates. Additionally, the implications of vaccination mandates on the workforce need to be monitored. Efforts to develop lucrative entry mechanisms into this profession and to retain existing workers will be essential to offset the workforce strain that will happen from DSPs who might leave the field because they are not willing to be vaccinated.

Limitations

One of the main limitations of this study is that it uses a convenience sampling method and as such the respondents to this survey may not match the demographics of the total direct support workforce. Our sample had lower participation by people of color and length of tenure in the field was longer than in some studies. Additionally, although it is a large sample of DSPs from nearly every state, the District of Columbia, and the U.S. territories, it is difficult to generalize findings to all DSPs in the United States. As previously noted, this survey was fielded before the full FDA approval of the Pfizer/BioNTech COVID-19 vaccine. It was also fielded before the federal vaccine mandates were announced.