Impact of employee benefits on families with children with autism spectrum disorders

Abstract

The objectives of this study are to evaluate the employee benefits parents of children with autism spectrum disorders have, how benefits are used, work change, and job satisfaction. We conducted a cross-sectional mailed survey study of 435 families with children with autism spectrum disorders residing in the United States. We received 161 surveys for a response rate of 37%. Families reported using the following benefits: 39% paid family leave, 19% unpaid family leave, 91% flexible work arrangements, and 86% telecommuting. Of respondents, 43% reported stopping work, cutting down on hours worked, or changing jobs because of their child’s condition. Having paid family leave was a positive predictor for job satisfaction. Parents of children with autism spectrum disorders have an interest and need for alternative work arrangements.

Keywords

autism spectrum disorders family functioning and support policy

Introduction

Autism spectrum disorder (ASD) affects approximately 1 in every 68 children in the United States (Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, 2014). In this article, we consider employee benefits such as paid or unpaid leave policies and flexible work arrangements in the United States context for children with ASD. Many studies (including one study of parents of children with ASD) have shown that parents, particularly mothers, of children with disabilities or children with special healthcare needs (CSHCN) have decreased employment, including working less hours or not being employed (Anderson and Elfert, 1989; Breslau et al., 1982b; Heck and Makuc, 2000; Kuhlthau and Perrin, 2001; Okumura et al., 2009; Salkever, 1982; Thyen et al., 1999; Walker et al., 1989). Using the 2003 National Survey of Children’s Health, Blanchard et al. (2006) found parents of children with autism had more difficulties with job maintenance and day-to-day care for their child compared to parents of children with other developmental problem. Parents of children with ASD compared to other CSHCN experience increased financial burden, including work loss, (Kogan et al., 2008) and parents of children with ASD were more likely than other parents to report that child care problems caused them to quit their job (Montes, 2011).

Studies have also shown that demands of caregiving can have a negative influence on the physical and psychological health of caregivers (Kuhlthau et al., 2010; Raina et al., 2005). Parents of children with chronic conditions (CCC) experience increased stress (Breslau et al., 1982a; Dyson, 1991, 1993, 1996; Patterson et al., 1992; Silver et al., 1998; Sloper and Turner, 1993; Walker et al., 1992) and poorer mental health (Breslau, 1986; Cadman et al., 1991; Thyen et al., 1998, 1999) than parents of otherwise healthy children. Mothers of children with ASD report being highly stressed and having poor or fair mental health (Montes and Halterman, 2007). The demands of caring for a child with ASD is associated with increased parenting stress (Blanchard et al., 2006; Karst and Van Hecke, 2012; Schieve et al., 2007; Weiss et al., 2012).

Compared to children without ASD, children with ASD have higher healthcare use, including physician visits; physical, occupational, or speech therapy; and treatment for emotional, developmental, or behavioral problems (Gurney et al., 2006). Treatment for ASD is multidisciplinary and includes applied behavioral analysis, speech therapy, occupational therapy, physical therapy, and medications to address symptoms of autism (Carbone et al., 2010; Myers, 2007; Myers and Johnson, 2007). Studies have also shown that healthcare expenditures are significantly higher for children with ASD than for children without ASD (Croen et al., 2006; Leslie and Martin, 2007; Liptak et al., 2006).

Employee benefits can not only include health insurance but also include other benefits such as family leave, telecommuting, and flexible work arrangements. These non-insurance benefits (referred to as employee benefits in this article) are designed to help employees balance their work and home demands and to help employees remain employed. These benefits may be particularly important for parents of CSHCN and among those, parents of children with ASD because this group of parents has high caregiving demands, high levels of stress, need for flexibility to assure that the child’s health and related needs are met, and a need to maintain employment to assure family income and insurance benefits. Little is known about the impact of these benefits for parents of children with ASD.

The US Family and Medical Leave Act of 1993 (FMLA) is a US federal law that provides leave for 12 weeks without the risk of job termination. However, this law does not require paid leave and excludes small businesses. Moreover, the 12-week time frame may be short for families with children with chronic medical conditions (US Department of Labor, Wage, and Hour Division, 2014). In the studies by Chung et al. (2007), parents of CSHCN who were eligible for FMLA benefits and aware of their eligibility were much more likely to miss work for a child’s illness than ineligible parents. In addition, parents expressed a need for more family leave. Approximately 41% of parents reported at least one time in the past 12 months that “they did not miss work even though they believed that they needed to because of their child’s illness” (Chung et al., 2007). Parents of CSHCN also reported barriers to accessing and understanding family leave benefits (Chung et al., 2012). In a study by Heymann et al. (1996), employed mothers with CCC were more likely to lack sick leave benefits than employed mothers without CCC. A study of 41 employers and working parents with CCC found that employers were generally not aware of the needs of employees who were parents of CCC, but were interested in promoting and expanding benefits, such as family leave policies and flexible work arrangements (Perrin et al., 2005, 2007). The above-mentioned literature is focused on CCC and CSHCN. It does not distinguish levels of severity within condition nor does it distinguish between conditions with ongoing needs versus episodic needs.

The objectives of this study are (1) to describe the employee benefits parents of children with ASD have and how these benefits are used; (2) to examine work change, including stopping work, cutting back on work hours, or changing jobs, due to a child’s health condition; and (3) to describe job satisfaction and the association of job satisfaction with employee benefits. Understanding the impact of employee benefits and which benefits help parents with children with ASD will provide important information to policymakers, employers, parents, and healthcare providers in their efforts to improve policies and help families.

Methods

We conducted a cross-sectional mailed survey study of 435 families with children with ASD from two clinical centers: the Lurie Center for Autism at the MassGeneral Hospital for Children and the Center for Children with Special Needs (CCSN) at the Floating Hospital for Children, Tufts Medical Center. Both of these health centers are in Massachusetts.

The study population was randomly selected from children aged 2 to 18 years old with at least one of the following diagnoses: autism, Asperger’s disorder, or pervasive developmental disorder, not otherwise specified (PDD-NOS). Only families with at least one employed parent were eligible to participate. We randomly selected 200 families from the Lurie Center and 235 children from the CCSN.

Surveys were mailed to the home with a cover letter from the developmental specialist at the Lurie Center for Autism or the CCSN. The cover letter described the study and invited parents to participate. Families who completed and returned the survey were offered either US$20 in compensation or the option to donate the compensation to one of the two centers. Institutional Review Board approval was obtained to conduct this study in both centers.

The survey domains included demographic and household data, employment status for respondent and spouse, if applicable, availability of employee benefits and use of benefits, and history of work change (stopped work, cut down on hours worked, or changed jobs) due to child’s condition and if work change was due to lack of benefits. Respondents were asked to answer questions about their spouse. The employee benefits that we focused on were paid family leave, unpaid family leave, flexible work arrangements, and telecommuting. We further created an indicator variable for whether the person had any (paid or unpaid family leave). Family leave is typically provided for pregnancy, the birth or adoption of a child, to care for sick family members, or if the employee has a serious illness. Flexible work arrangements allow employees to vary their schedules without changing the work location or the total number of hours worked (Georgetown University Law Center, Workplace Flexibility, 2010).

We show descriptive data including means and standard deviations and percentages. We further computed logistic regression models showing the relationship of having employee benefits and job satisfaction using SAS 9.2 modeling all benefits simultaneously.

Results

Of the 435 surveys sent, we received 161 completed surveys for a response rate of 37% respondents reported on their spouse’s benefits (if applicable). We excluded one completed survey because one respondent reported that their child did not have ASD. We excluded four more surveys because there was not at least one household member who was employed and a further five surveys were excluded due to extensive missing data.

Demographic data are illustrated in Table 1. Overall, the majority of respondents were female (69%), had at least a college education, and were two-parent households with an income greater than 80 K. We also looked at demographic data based on the household type. For households with all parents employed, the majority of respondents were female with at least a college education. For households with two parents with one parent employed, the majority of respondents were male with at least a college education. For two-parent households with either two parents or one parent employed, the majority of households had incomes greater than 80 K. For one-parent households with one parent employed, the majority of households had incomes less than 40 K. The majority of households in our sample were two-parent households.

Table 1.

Demographic characteristics of respondent and child.

Demographics: respondent	Percentage (N)
Relationship of respondent
Mother	68.6% (104)
Father	30.1% (45)
Other	1.2% (2)
Respondent age (years)
20–29	3.2% (5)
30–39	52.6% (79)
40–49	37.2% (56)
50–59	5.8% (9)
Over 60	1.3% (2)
Respondent educational level
<HS	0.6% (1)
HS degree	11.5% (17)
Some college	25.0% (38)
College graduate	25.6% (39)
More than college	37.2% (56)
Household employment status
Two parents—both employed	47.0% (71)
Two parents—one employed	43.1% (65)
One parent—one employed	9.9% (15)
Household income
<40 K	14.8% (22)
40 K to 80 K	29.5% (44)
>80 K	45.5% (69)
Don’t know/prefer not to answer	10.3% (16)
Demographics: Child
Gender
Male	82% (124)
Female	18% (27)
Age (years)
2–4	33.3% (50)
5–13	53.6% (81)
14–18	13.1% (20)
Race/ethnicity
White or Caucasian	88.5% (133)
Black or African American	1.9% (3)
Asian, Pacific Islander, or Southeast Asian	1.9% (3)
Multiracial or other	7.7% (11)
Hispanic or Latino descent
Yes	8.3% (13)
No	91.7% (138)
Health insurance status
Public	12.2% (18)
Private through employer or union	66.7% (101)
Private through another source	1.9% (3)
Both public and private	19.2% (29)
Uninsured	0% (0)

Base sample 151.

Table 2 shows the percentages of respondent and spouses who were offered and used specific employee benefits. Offers of benefits ranged from 27.5% being offered telecommuting to 83.1% being offered some sort of family leave. Uptake of the benefits varied as well but was generally quite high with just about half (51.8%) of the respondents who were offered family leave (paid or unpaid) using it, 91.3% of those offered flexible work arrangements using them, and 86.1% of those offered telecommuting using them. Rates for the spouses being offered benefits were slightly lower than for respondents, but still of a similar magnitude with 72.2% being offered paid or unpaid family leave, 48.9% offered flexible work arrangements, and 16.9% offered telecommuting. Rates of uptake for these benefits by spouses were also high (56.1% used paid or unpaid family leave, 77.3% used flexible work arrangements, and 93.3% used telecommuting). When compared with data from the US employees (excluding federal employees and those in agriculture), offers of benefits were greater in the general population in all instances except for unpaid family leave where the percentages were equal (77%) and the percentage offered flexible work arrangements where more parents of children with ASD were offered benefits (60% vs 54%). The results for the percent of employees who used offered benefits were greater among the general population for paid (57%) and unpaid leave (40%) and telecommuting (24%). For flexible work arrangements, the pattern is the reverse with the US percentage 82% compared to 91% among respondents and 77% among spouses.

Table 2.

Percentage of respondents and employed spouses offered employee benefits and using benefits.

Benefit	Employer offers	Used it (% those offered benefit)^a
Respondent^b
Paid family leave	39.5	39.2
Unpaid family leave	77.8	19.4
Paid or unpaid family leave	83.1	51.8
Flexible work arrangements	59.7	91.3
Telecommuting	27.5	86.1
Employed spouse^c
Paid family leave	35.6	28.1
Unpaid family leave	68.2	31.7
Paid or unpaid family leave	72.2	56.1
Flexible work arrangements	48.9	77.3
Telecommuting	16.9	93.3

Use of benefit is calculated with the N who used the benefit as the numerator and the number who reported that the benefit was offered as the denominator.

Employer offers base N for respondent is 151.

Employer offers base N for spouses is 93.

We asked respondents whether they have ever stopped work, cut down on the hours worked, or changed jobs due to their child’s autism (results not shown). Among respondents, 43% reported that they have and 26% reported that their spouses had. When broken down by household type, the results were similar for households with two parents who were both employed (45% of respondents and 23% of spouses had work loss/change). In households with two parents with one employed parent, 36% of respondents and 32% of spouses experienced work loss/change due to their child’s autism. In one-parent households, 69% reported experiencing work loss/change.

Families were asked whether they experienced work loss or employment change due to lack of employee benefits. Among the entire sample, 55% of respondents and 64% of spouses reported that they experienced work loss or employment change due to lack of flexible work arrangements. Approximately 32% of respondents and 48% of spouses reported experiencing work loss or employment changes due to lack of paid family leave and 14% of respondents and 24% of spouses due to unpaid family leave (Table 3).

Table 3.

Percentage of respondents and employed spouses experiencing work loss or employment change due to lack of employee benefits.

Benefit^a	Respondent	Employed spouse
Percentage reporting work loss due to the lack of paid family leave	31.5	47.8
Percentage reporting work loss due to unpaid family leave	13.5	23.8
Percentage reporting work loss due to flexible work arrangements	54.7	65.2

Base N respondent = 151 and spouse = 93.

Most respondents and spouses were very satisfied or satisfied with their jobs (Table 4). National estimates show that 52% of employees are very satisfied with their job with our sample reporting lower estimates: 29% for employees and 29% for spouses. Table 5 illustrates odds-ratios for job satisfaction. In regression analysis, having paid family leave was a positive predictor for job satisfaction with an odds ratio of three among respondents and having flexible work arrangements was a positive predictor for job satisfaction among spouses with an odds ratio of three.

Table 4.

Percentage of respondents and spouses reporting job satisfaction.

Benefit^a	Respondent	Employed spouse
Very satisfied	39.0	29.4
Satisfied	43.4	35.9
Neutral	14.0	28.3
Dissatisfied	2.9	6.5
Very dissatisfied	0.7	0.0

Base N respondent = 151 and spouse = 93.

Table 5.

Predictors of job satisfaction (uses job satisfaction as three categories—very sat/sat vs neutral vs dissat/very dissat).

Benefit offered	Job satisfaction (OR)
Respondent^
Paid family leave	3.0 (1.0, 8.5)*
Unpaid family leave	0.90 (0.31, 2.7)
Paid or unpaid family leave	1.4 (0.45, 4.2)
Flexible work arrangements	2.0 (0.82, 4.9)
Employed spouse^
Paid family leave	0.94 (0.39, 2.28)
Unpaid family leave	1.5 (0.59, 3.76)
Paid or unpaid family leave	1.4 (0.56, 3.62)
Flexible work arrangements	3.1 (1.24, 7.55)*

Base N respondent = 151 and spouse = 93.

Statistically significant at 0.05 or less.

Discussion

Among a sample of parents of children with ASD in the United States, employee benefits are frequently used and lack of such benefits is frequently cited as a reason for job loss. Many parents were aware that their employers offered employee benefits, such as paid leave, unpaid leave, flexible work arrangements, and telecommuting, but far fewer parents used the benefits, particularly unpaid leave. Given the reported association of some of these benefits with staying employed and higher job satisfaction, employers and advocates may want to educate parents about employment benefits and help families navigate their use. Employers may also consider promoting these benefits in the context of helping take care of children with health conditions in general or ASD in particular. Employers may be rewarded with a more satisfied and stable work force. Of note, lack of flexible work arrangements was reported to be an important reason for changing employment by both respondents and spouses. Employers may want to pay particular attention to this benefit. On a federal level, expanding the time period of allowed absence covered by FMLA may help some families, as would expanding it to cover employees of small businesses. FMLA does have a provision for use on an intermittent or reduced schedule basis if the employee makes reasonable provisions to schedule planned medical treatment in a way that “so as not to unduly disrupt the employer’s operations” (United States Department of Labor, 2014). Perhaps FMLA could be further expanded to help families with flexible work arrangements. Findings in countries with paid or more extensive FMLA may be different. Other countries have higher rates of paid leave for serious illness though the United States has moderate rates of the use of flex time (OECD, 2011). Other countries also have different welfare state models which can influence policies that are relevant to families with children with ASD (see Montes, 2011, for a discussion related to child care policies related to children with ASD).

In this sample, many parents report having stopped work, cutting back on hours worked, and changing jobs due to their child’s health. Some reported that these changes were due to a lack of employee benefits, mainly paid leave and flexible work arrangements. It is likely that families need the income support that is protected by paid leave and flexible work arrangements. Moreover, job satisfaction was related to paid family leave (in the respondent) and flexible work arrangements (in the spouse). We are not sure why different benefits were found to be related based on respondent versus spouse status. This supports the value of benefits for parents who are employed. This study supports the notion that work benefits are important both in keeping parents from leaving employment and maintaining satisfaction among the employed.

There were limitations to our study. First, this study is a US sample and is not generalizable to other contexts. Second, the sample was on average from higher socioeconomic status groups. This creates a likely bias in our responses likely to a group that has better access to employee benefits. Thus, we may see a greater use of benefits than we would if the sample had been more representative. Since the focus of the study is on the relationship between having benefits and employment and job satisfaction rather than the percentage of families with benefits, the impact of this potential bias may be attenuated. Additional studies on nationally representative sample of parents of children with ASD could be an important next study. Third, parents may not all be aware of the employee benefits that are available to them. There may be a bias in that those who use the benefits are more likely to report that the benefits are offered by their employer. Finally, this article did not consider the implications of the Supplemental Security Income (SSI) Program on parental employment choices. For children who are designated by SSI as having a disability and who are income eligible, SSI provides financial support and Medicaid. These programs are primarily relevant to lower income families; however, decisions about whether to work (and thus family income) may be influenced by this program.

Studies have shown the significant economic burden and employment impacts on families of children with ASD (Cidav et al., 2012; Lavelle et al., 2014; Montes and Halterman, 2008; Ouyang et al., 2014). There is less information on how employee benefits may mitigate the employment impacts on families. Parents with children with ASDs face challenges caring for their child and participating in the work environment. Employee benefits, such as leave policies and flexible work arrangements, may aid families to remain in the workplace and provide their children with the care they need. Employers who seek to retain valued employees may consider providing and promoting these benefits to parents of children with ASDs.

Footnotes

Acknowledgements

The authors wish to express gratitude to all the families who participated in this study.

Funding

This work was supported by grants from the Deborah Munroe Noonan fund and the Nancy Lurie Marks Foundation.

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