Currently in the United States, half of all workers and three fourths of low-income workers do not receive a single paid sick day (National Partnership for Women and Families, 2007). What does this mean for U.S. families? It means that parents often must choose between caring for a sick child and paying their bills. Families of children with developmental disabilities are more likely to live in poverty (Fujiura & Yamaki, 2000), and their children are significantly more likely to miss school days than typically developing children (Boyle, Decoufle, & Yeargin-Allsopp, 1994). These factors regularly force parents to choose between income and family. Improving labor force protections that support working families is imperative.

The Healthy Families Act (2007), pending in Congress, is legislation that would do just that. The bill proposes to extend an annual minimum of 7 days of paid sick leave to a broad cross-section of U.S. workers. This legislation would, for the first time, support realistic work and life balance for many moderate- and low-income families and would have a particularly important impact on families who are caring for children or adults with developmental disabilities.

The Current Reality of U.S. Workforce Policy

Labor laws and workforce policy have not kept up with a changing U.S. workforce. Labor laws were crafted in the 1930s, forged from the assumption that a household contained one wage-earning and one stay-at-home adult, with the latter responsible for family care, which relieved the worker of such duties (Roehling & Moen, 2003). Women's increasing workforce participation has led to current estimates that in 64% of two-parent households, both adults are working outside the home for pay (Roehling & Moen, 2003). Labor laws that meet the real needs of current U.S. families are long overdue.

The Family and Medical Leave Act (FMLA) of 1993 was the first federal policy initiative that addressed family's competing demands of balancing work and family responsibilities. Before its passage, U.S. workers had no job protection if they needed to take a leave of absence due to family or personal illness or the birth or adoption of a child. The FMLA provides for 12 weeks of job-protected, unpaid leave for full-time workers of companies with 50 or more employees who have been employed by their company for at least 1 year (Waldfogel, 2001). However, the FMLA fell short of addressing families' need for true security. The Healthy Families Act would improve on the protections of the FMLA and provides additional support for working families.

The Healthy Families Act Offers Caregiver Security

The proposed Healthy Families Act (2007) would extend leave to workers who need to care for family members as well as themselves. Most U.S. workers who receive paid sick time cannot use it other than for their own illnesses, including 94 million working parents who are not allowed to use their sick leave to care for a sick child (National Partnership for Women and Families, 2007). Only 11% of low-income families are afforded paid sick leave that allows for care of sick family members (Multistate Working Families Consortium, 2007), which adversely affects people with developmental disabilities and their families, who are overrepresented in poverty.

Families play an indispensable role in the care of people with developmental disabilities across the life course: About 60% of people of all ages with developmental disabilities live with family caregivers (Fujiura, 1998). Despite this elevated caregiving responsibility, there is scant public financial assistance available to these families (Parish, Pomeranz-Essley, & Braddock, 2003), and, thus, a steady family income remains a necessity in addition to caregiving. The U.S. Government Accountability Office has highlighted the critical need for effective policy supports that enable families to continue to provide care (Walker, 2002).

When faced with a choice between work and caring for a child, families today are too often forced to choose work. In a recent study, 41% of respondents said they did not miss work to care for a chronically ill child because they could not afford to forego income, they were afraid of losing their job, or they thought missing work would hurt their job advancement (Chung et al., 2007). Mandatory paid sick leave like that proposed in the Healthy Families Act would allow families to care for their children without the threat of wage or job loss and would begin to address the daily struggle of families who care for loved ones with developmental disabilities.

The Healthy Families Act Offers Financial Security

Families of individuals with developmental disabilities experience higher rates of poverty (Fujiura & Yamaki, 2000), which are associated with increased costs of care and lost work opportunity due to caregiving responsibility over time (Parish, Seltzer, Greenberg, & Floyd, 2004). Not only are the costs of raising children with developmental disabilities higher, but the trajectory of care for children with developmental disabilities is extended beyond that of nondisabled children. In essence, families of children with disabilities forego earning income to care for their children through adolescence and into the child's adulthood (Einam & Cuskelly, 2002; Parish et al., 2004; Porterfield, 2002), and families bear elevated costs of caregiving over time, which contribute to diminished financial well being.

The reduced employment of mothers of children with developmental disabilities is occurring at a time in U.S. history when men's wages have been declining for decades (Blank, 2007). Women's economic contributions to their families have never been more critical. Two-parent families caring for a member with developmental disabilities increasingly struggle with the difficult choice of work and caregiving. In single-parent households, this difficult choice has long been the status quo (Porterfield, 2002).

The Healthy Families Act Fills Current Policy Gaps

Although the FMLA (1993) has helped some workers take leave, about one third of the U.S. workforce is excluded because they work for an employer with fewer than 50 workers or do not work full time (Asher & Lenhoff, 2001). Three out of four eligible workers who wanted to take leave report that they did not because they could not afford the income loss (Pandya, Wolkwitz, & Feinberg, 2006). Expanding coverage to more workers and providing financial subsidies to individuals on leave are needed before most working families, especially those caring for a family member with developmental disabilities, can utilize needed paid leave.

The Healthy Families Act would mandate paid sick leave for those who work for at least 20 hr per week and for a company with 15 or more employees. Extending paid leave to part-time employees is especially important for mothers who are also caring for a person with developmental disabilities, because these women often reduce their work hours, as noted earlier.

In summary, the Healthy Families Act is vital legislation for all of America's working families. However, it is most critical for families of people with developmental disabilities, who experience greater living costs and elevated, enduring caregiving responsibilities. Policymakers should directly address the needs of families caring for people with developmental disabilities by passing the Healthy Families Act and legislating critical support of vulnerable families who balance caregiving and employment.

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Author notes

Authors: Susanna Birdsong, MSW, and Susan L. Parish, MSW, PhD (parish@email.unc.edu), Assistant Professor, University of North Carolina, School of Social Work, 325 Pittsboro St.–CB 3550, Chapel Hill, NC 27599-3550