Balancing work and family: Perspectives of parents of children with developmental disabilities
Freedman, Ruth I
BALANCING WORK AND FAMILY responsibilities is a dilemma faced by many parents with young children. We have little information, however, about how parents of children with developmental disabilities balance and sustain their multiple caregiving and work roles. This article reports the findings of a qualitative research study that obtained the perspectives of working parents of children with disabilities regarding their work and family experiences. Four focus groups were convened in which parents discussed the influence of the caregiving demands of their child on work and family roles and the supports that they found helpful in balancing their multiple responsibilities.
During the past decade, several demographic trends have had an impact on the caregiving efforts of families of children with special needs. First, the number of mothers in the workplace has increased. Sixty-five percent of mothers work outside the home, including more than half of all mothers of children younger than one year of age. By the year 2000, it is predicted that approximately three of every four children will have mothers in the workplace (U.S. Senate Committee on Labor and Human Resources, 1991). A second demographic trend with significant implications for work/family issues is the increase in single-parent families. In 1988, women were the sole parents in approximately 21% of all families with children (Hayghe, 1990). Third, the number of two-parent, dual-earner families has increased (Googins, 1991).
The literature suggests that these trends may have special implications for families with children with developmental disabilities. Attempting to work and provide care to a child with special needs appears to be particularly difficult. Studies have found that caregivers of children with disabilities are less likely to be in paid employment and are more likely to work part time, earn less money, and reduce the hours they work or take a leave of absence to care for their children (Akabas & Krauskopf, 1984; Baldwin & Glendinning, 1983; Birenbaum, Guyot, & Cohen, 1990; Breslau, Salkever, & Staruch, 1982; Gallimore, Weisner, Bernheimer, Guthrie, & Nihira, 1993). These findings may reflect the difficulty parents have locating appropriate child care for their children with special needs (Akabas & Krauskopf, 1984; Fink, 1988).
Although many studies have examined the impact of caring for a child with disabilities on caregiver stress and well-being (Beckman, 1983; Breslau & Davis, 1986; Breslau, Staruch, & Mortimer, 1982; Frey, Greenberg, & Fewell, 1989; Friedrich Friedrich, 1981; Singer & Irvin, 1989; Wikler, 1981), these analyses did not systematically investigate the interplay between caregiving and work roles and responsibilities. Similarly, a growing body of literature focuses on the impact of work/family roles and conflicts on employee well-being (Barnett & Baruch, 1985; Bohen Viveros-Long, 1981; Burden, 1986; Crouter, 1984; Googins, 1991; Menaghan & Parcel, 1990). This literature, however, does not focus on parents of children with disabilities.
The purpose of this exploratory study was to gather information from parents of children with developmental disabilities about the impact of caregiving on work and family roles. The following key questions were addressed:
* How does having a child with developmental disabilities influence decisions about work?
* How does having a child with developmental disabilities influence work performance?
* How does having a child with developmental disabilities influence career choices and career development?
* How do parents use formal and informal supports to meet their work and caregiving responsibilities?
* What supports and benefits do parents derive from their workplace?
In order to gain the perspectives of parents of children with disabilities, focus groups were conducted. Focus groups are a means of collecting qualitative data through group discussions about a selected topic (Krueger, 1988). By encouraging participants to talk above their own experiences and to respond to comments made by other participants, focus groups create a dialogue for ideas and points of view that might not be elicited through individual interviews. This methodology was particularly appropriate for this study because it allowed parents to help formulate the critical issues for discussion.
Various strategies were used to recruit parents, including advertisements in parent-advocacy newsletters, fliers distributed at a developmental disabilities evaluation clinic, and displays at conferences attended by potential participants. To be eligible to participate in a focus group, families had to have a child with special needs currently living at home and at least one parent had to be employed. Four focus groups were held, with six or seven participants in each group. Each parent attended one focus group that lasted from one and one-half to two hours. Prior to the focus-group discussions, parents completed a questionnaire about their family background, their child’s special needs, and other caregiving responsibilities.
Twenty-six parents representing 21 families participated in the four focus groups. Although most families were represented by one parent, five married couples participated. Children of participants had a range of disabilities, including mental retardation, Down syndrome, pervasive developmental delay, attention-deficit disorder, autism, and learning disabilities. The severity of the disabilities varied widely, with differences in medical needs, behavioral issues, and cognitive impairment. The ages of the children with special needs ranged from 4 to 32 years; most families had one or two other children.
Most of the parents attending the groups were employed in professional jobs, with 12 employed in businesses, 8 in human services, and 5 in educational settings. The number of work hours per week varied, with 15 employed full time, 10 part time, and 1 not currently working outside the home. All 26 participants were white, 20 were female, and 2 were single parents.
Generalizability of this study’s findings are limited given the small sample size and the relative homogeneity of families in terms of socioeconomic status and ethnic and racial background. This study is an exploratory first step in gathering information about work and family issues. Larger and more diverse samples are needed to make generalizations beyond this study’s sample.
Questions for discussion in the focus groups were developed by the researchers from the literature in the general area of work and family as well as studies related to stress and coping among parents of children with developmental disabilities. At each focus group, one of the researchers acted as the facilitator, directing questions and monitoring the discussion, while a second researcher took notes. In addition, all of the groups were tape recorded and transcriptions were produced.
After each focus group, the researchers reviewed the notes and transcriptions to revise the questions for the next group on the basis of themes that had arisen in the previous sessions. The purpose of these revisions was to emphasize areas that might not have received full attention in the other groups. Following the final focus group, each of the three researchers independently analyzed all of the information from the four groups and identified the key findings that emerged most consistently from the data. Many similarities were revealed when the three sets of results were compared. In the few instances in which discrepancies were found, the researchers as a group reviewed the data to resolve the differences.
How does having a child with developmental disabilities influence decisions about work? he decisions made by the focus-group parents about whether to work, how much time to take off, how many hours to work, and what schedule to work were influenced by their caretaking responsibilities. In two-parent families, the mother typically worked part time and the father full time in order to earn a full salary and obtain health insurance coverage.
Most of the mothers in our focus groups quit their jobs after their children with developmental disabilities were born and returned to work part time when their sons or daughters were older and formal services were in place. Although this pattern is often found in families with children without special needs, these mothers felt that they delayed returning to work even longer because of their children’s disabilities. This was especially true when surgery, extended convalescence, or specific therapies were required. In contrast, one mother returned to work earlier than she otherwise would have because of the demanding nature of her child’s medical and related needs. She viewed work as a respite from the intense caregiving responsibilities required by her daughter.
Many parents, usually mothers, chose to work part time instead of full time, because appropriate, affordable, child-care programs, particularly after-school programs, were unavailable. For example, the mother of a six-year-old left her full-time job in a law firm because she was unable to arrange day care after school due to her son’s difficult behavioral problems.
I had to leave the law firm. I’m a frustrated Perry Mason. I now write law books because that is the only job that I can work during the day and be the afternoon caregiver.
In addition to adjusting the number of hours worked or quitting work to care for a child with special needs, parents also reported changing their work schedules to accommodate the needs of their children. One parent reported going to work at 6 A.M. in order to complete work by 2 P.M. when her child returned home from school. In another family, a wife worked part time at night after her husband returned home from his full-time day job.
Although most parents felt that their work decisions were influenced by having a child with a disability, a few parents indicated that they had made no special accommodations in their work situations resulting from their child’s special needs. It’s important to note that the children in these families did not have severe medical or behavioral problems requiring specialized monitoring or care.
How does having a child with developmental disabilities influence work performance? Many parents noted that having a child with special needs had positively influenced their attitudes toward work as well as their work performance. they cited the psychological benefits they derived from working and described work as a “respite,” a “welcome distraction,” or a “salvation” that provided at least a temporary break from their intense caregiving responsibilities. One parent said she felt like a problem solver at work, in contrast with her feelings of despair at home, where she lacked control and had little success working with her child.
In addition to having a greater appreciation of work, parents also reported “bending over backwards” and “needing to be super-achievers” to be sure that their work was done, knowing that they may need greater flexibility and special allowances to take time off for family responsibilities or to make personal telephone calls from work. Further, some parents felt that their experiences raising children with special needs made them better able to handle difficult work situations.
How does having a child with developmental disabilities influence career choices and career development? Having a child with special needs also influenced the types of jobs or careers that parents pursued. After the birth of her son with special needs, one mother was so impressed by the professionals who helped her son in an early-intervention program that she quit her job as the vice president of a fast-paced sales company and returned to school for a teaching degree. Other parents chose to work in jobs that built upon their personal experiences and expertise as parents. Several participants began as volunteers in consumer organizations and later became full-time paid advocates or social workers who helped other families obtain services for children with special needs. As rewarding as their careers have been, one mother discussed the disadvantages of working so closely with these families: “I work my life and I live my job. I feel like I don’t ever get away from it.” For this reason, other parents deliberately chose jobs that were different from the caregiving they provided at home. In addition, some parents chose a particular field such as education that would allow them to care for their children during school vacations and summers.
The career development and advancement opportunities of many parents were also curtailed by their caregiving roles and responsibilities. As one mother said: “I’ve been offered jobs lots superior to the job I have, but have not been able to take these jobs because they involve traveling.” A father stated,
I just recently turned down a promotion because it requires some Saturday work. It just would be disastrous for our home if I weren’t home on Saturdays. I give the boys a shower and shave in the morning since they are unable to do these things.
Several parents decided not to pursue graduate school because of the care required by their children with special needs.
Other parents turned down job offers that would have required relocating because of their concern about the adequacy and continuity of services for their child with special needs. As one parent noted,
You’re in a place where systems are working well for you. If you have good schools, good medical facilities, you stay put. You don’t know what kind of services there would be if you lived in other parts of the country.
How do parents use formal and informal supports to meet their work and caregiving responsibilities? The parents attending the focus groups used widely differing combinations of formal and informal support services in order to work and meet the needs of their families. Several parents were able to work and provide care for their children by utilizing after-school programs, transportation services, and in-home personal-care services. After-school programs were helpful because they allowed some parents to extend their work day and attend late meetings or complete paperwork at the office. Unfortunately, these services were sporadic either because funding could not be sustained from one year to the next or because it was impossible to maintain trained personnel. In addition, transportation and in-home personal care services were described as restrictive, in part, because work hours must be set according to the rigid schedules required by formal service providers.
Even when formal support services were stable, parents were often concerned about how they would reconstruct portions of their support network when their children needed to make the transition from one set of services to another. The transition from high school was identified as particularly problematic because of lack of funding and available work and residential programs for their child. As one mother observed, “When my daughter was born, there was a lot of money and there was a lot of respite care, and as she got older, they just kept pulling the rug right out from under you.”
In order to fill in gaps in the formal service system, many parents described how they used informal support from family and friends to assist them in working and providing care to their children with special needs. One mother related that her neighbor took care of her child for an hour each morning when neither she nor formal services were available. Parents also depended on support from informal sources in crisis situations, such as for transportation or illness.
For families of children with serious medical conditions, however, support in an emergency was often lacking primarily because parents felt that no friends or relatives were available who either could or would be willing to provide the skilled care needed by their children. One mother noted that when her daughter gets sick, the grandparents cannot care for her because they are unable to lift her or provide for her other needs.
Finally, parents indicated that their greatest source of emotional support was other parents of children with special needs. One mother stated,
I’m lucky that I have a very close friend who has a girl the same age as my daughter and who has the same syndrome. I don’t know what we would do without each other. She understands the issues.
What supports and benefits do parents derive from their workplace? Parents related that they relied on support from their co-workers and bosses as well as formal policies regarding benefits to help them meet their work and caregiving responsibilities. In terms of supports, many said that their co-workers and bosses made it possible for them to come to work late, bring work home, take their children to various appointments during the day, and spend time on the telephone to take care of personal matters. Most parents indicated that this willingness to be flexible stemmed from the fact that they had proven themselves over the years as valued employees.
More formal time-off policies were also a source of support. Some employers allowed parents to take days off to care for sick children. Other employers allowed parents to take leaves of absence when their children had undergone surgery. Further, for parents working part time, the flexibility to choose the days they would work each week supported their ability to meet their caretaking responsibilities.
Health insurance was viewed by families as a double-edged sword. In one respect, insurance provided through employment offered families the security they rely on to meet the often intense medical needs of their children. One mother said, “That job matters to our survival as a family.” However, in order to maintain their insurance, parents made many work and career concessions. For example, many parents remained in their current jobs in order to receive consistent health care coverage rather than move to a better position in another company. One father stated: “You are pretty much like an indentured servant to that company because if you leave that company, you lose those health benefits.”
Several key themes emerged from the focus-group data that have important implications for work/family policies and future research. First, work plays a vital and positive role in the lives of families with children with developmental disabilities. Parents depend on their jobs not only for financial remuneration and health benefits, but also as a psychological source of fulfillment, respite, and control over their lives. As a result, parents consider themselves to be loyal, conscientious workers and are eager to be of value and to be valued in their workplace settings.
Second, the needs of working parents who have children with developmental disabilities appear to be strikingly similar to the needs of working parents who have children without disabilities. Work-and-family studies in general have found that working parents frequently experience dilemmas in balancing work and home responsibilities and need affordable child care, health care, and flexible and supportive workplace environments to help them manage their multiple responsibilities (Googins, 1991). As one focus group parent noted,
You need a fundamental change in society’s values in this country about children, period. When you pet it about children in general, the special-needs kids will pet pulled along.
What seems to distinguish families of children with disabilities from other working families is the intensity and complexity of the arrangements required to balance work and home responsibilities successfully. For example, parents of children with disabilities, particularly those with serious medical or behavioral problems, find it more difficult to locate appropriate, affordable child care. Similarly, these families are more dependent upon health insurance policies which comprehensive coverage. Whereas all working parents sometimes find it necessary to take time off from work to care for a sick child, this need is likely to occur more frequently in families with children with chronic disabilities. This is especially true when ongoing care and therapies from a large team of professionals is required. Parents may also need to spend more time coordinating the services required by their children. Whereas most parents meet occasionally with school staff about their children’s programs, the parents of a child with disabilities may also spend time meeting with their child’s therapists and developing and monitoring their child’s individualized education plan.
Successfully balancing work and family responsibilities appears to be a more complex task for families of children with developmental disabilities than for families of children without these disabilities. The supports and arrangements that they construct seem to be more fragile and tenuous than those in other families. When parents arrange a support system that meets their needs, they are anxious about whether it will endure and are reluctant to make changes in their careers that might jeopardize their existing work-family balance. In addition, many of these families continue to care for their children with disabilities well into adulthood. Thus, their need for supports does not diminish after their sons or daughters are no longer attending school.
The findings generated by the four focus groups have important implications for policy and practice in the human services field, particularly regarding employee benefits, child care, health insurance, and family supports. Given the limited and exploratory nature of this initial study, however, the conclusions drawn need to be examined further in larger-scale studies of families of children with developmental disabilities.
The availability of employee benefits and the flexibility of the workplace environment are critical supports for parents of children with special needs. Employer policies that assist parents in balancing work and family responsibilities include on-site child care or child-care vouchers, flex-time, job sharing, dependent-care reimbursement, sick days to care for dependents, maternity coverage, and medical-leave plans. These family-oriented policies benefit all workers with dependent-care responsibilities, including employees caring for spouses with disabilities, elderly parents, or children without disabilities. In addition, evidence increasingly indicates that employers also benefit from such policies. Current research indicates that policies such as employee-sponsored child care or the availability of alternative work schedules may reduce workers’ absenteeism, tardiness, and turnover and may increase workers’ morale and job satisfaction (Gonyea, 1993).
A flexible cafeteria-style benefits menu in which employees can choose from a list of benefit options is helpful in addressing the various health and dependent-care needs among employees, including parents of children with special needs. Recognizing that employers might not be willing or able to pay for all benefits for all employees, parents could choose options that address their most pressing needs. For example, flex-time or job-sharing options might be critical for some parents, whereas other parents may prefer dependent-care reimbursement or sick days to care for their children.
A second area of concern is the availability of affordable, appropriate child-care alternatives for children with special needs. Full-day and after-school day-care options are needed as well as respite or crisis day-care options when regular arrangements are not available. Childcare staff who are trained to work with children with behavioral, medical, and other special needs are greatly needed. Although many parents expressed the desire for school and daycare programs in their own communities that integrate children with disabilities into regular programs, they felt that existing programs were unprepared or unwilling to include their children. In addition, parents believe that child care for children with special needs is much more costly than for other children.
When children reach school age, parents often plan to work during their child’s school hours. However, if schools do not offer full-day programs or parents are unable to arrange care or supervision in the after-school hours, they may be limited to part-time positions. Furthermore, these situations may continue over a period of several years if older children with special needs are not able to be at home alone.
The lack of appropriate vocational and residential options for young adults with disabilities is a major obstacle to their growth and independence as well as a significant problem for their families. Focus-group parents whose children were reaching the age at which they would no longer attend public schools anticipated having to adjust their work and home lives to accommodate their extended caregiving responsibilities. In one family, the parents were considering leaving their current jobs in order to open a family business that would provide employment for their daughter with special needs. This dilemma illustrates the need for the development of supported and competitive employment programs and residential alternatives for young adults who are making the transition out of school as well as supports for their families during this process.
Closely tied to issues of employment is the need for comprehensive health care coverage. Many families with children with disabilities have inadequate or no insurance as a result of their children’s preexisting conditions. Important features of health insurance reform, derived from the concerns voiced by focus-group parents, include universal access, comprehensive service coverage, and consumer choice in selecting health care providers. If these proposed reforms are implemented, working parents might not feel as “locked in” to their current jobs and may feel freer to change jobs and pursue career opportunities without the threat of losing health care coverage.
From a practice perspective, human service professionals need to be aware of the challenges faced by employed parents of children with disabilities. Social workers need to understand the positive and critical role that work plays in the lives of many of these parents and the importance of “family-friendly” policies that support them. As the human services field moves increasingly toward family-centered models of practice, it will be important for professionals to collaborate with, support, and enable family members to function in all spheres of their daily lives, including work, home, and community. Human services professionals can play important roles, both in providing information about and referrals for existing resources and mobilizing and advocating for needed services and supports. Further, professionals can help foster opportunities for working parents of children with disabilities to meet, share information, and support other parents in similar circumstances.
The focus-group results and the policy implications drawn from these findings should be examined further. First, larger-scale studies of parents of children with disabilities should be undertaken to test the hypotheses generated from these data. Structured interviews that combine quantitative and qualitative data-collection techniques should be conducted to assess relationships among and between variables measuring child, family, and workplace characteristics; the nature and availability of formal and informal supports; and parental well-being. Both cross-sectional and longitudinal studies are needed.
Second, future research projects should include more diversity among families in order to analyze whether differences exist between types of families with respect to how they balance their work and family responsibilities. These analyses should include the following variables: ethnic background, family structure, type of employment, size of employer, and type of employer.
Third, research that compares the work and family experiences of families with children with disabilities with families of children without disabilities would help illuminate the commonalities and differences in the needs of these families.
Finally, evaluations of the impact of policies such as health care reform and family and medical leave policies on families of children with developmental disabilities should be conducted.
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Ruth I. Freedman is Assistant Professor, Boston University School of Social Work, and Leon Litchfield is Research Associate, Center on Work and Family, Boston University, Boston, Massachusetts. Marji Erickson Warfield is Assistant Professor of Pediatrics, University of Massachusetts Medical School, Worcester, Massachusetts. This article is based on work supported by a grant from the Boston University School of Social Work and Boston University Center on Work and Family.
Copyright Family Service America Oct 1995
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