Paid Family Leave for Parents of Chronically Ill Children

Abstract

PARENTS OF CHRONICALLY ILL CHILDREN FACE UNusual challenges in the current US health care system. The system is an odd mix of public and private insurance. Children are covered either through their parents’ employment-based insurance or through public insurance programs (Medicaid) that require meeting some type of financial means test. There is little health insurance support other than Medicaid for those individuals who lack insurance as a result of partial employment or for those who have employment-based insurance that provides inadequate coverage for the employed individual or family members. Children with special health care needs are defined as “those children who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition who also require health and related services of a type and amount beyond that required by children generally.” Methods using this definition to identify chronically ill children estimate that 15% of children have a chronic illness and that these children consume approximately 50% of the health care resources devoted to children. Individually, these children are expensive to care for and costs increase significantly according to the severity of the chronic condition. Expenditures for health care of chronic conditions in childhood generally cannot be anticipated. Consequently, a family with a child who has a chronic health condition faces many unexpected costs and personal choices. These unexpected costs include insurance co-payments, out-ofpocket expenses such as transportation needs, medications, special treatments, equipment, and home support of the child. One family member may have to stay home to provide parental care. There are choices concerning who will provide that home care and whose work-related insurance is essential. This decision can be difficult if the parent who would prefer to be the stay-at-home parent is also the one who has the most job satisfaction, best employer-based insurance coverage, or earns the most money. In addition, the loss or decrease in employment may have significant influence on a family member’s sense of personal worth or selfesteem. These losses increase according to the severity and needs of the child and, by necessity, may lead the family closer to Medicaid as the principal safety net insurance coverage. The 1993 Federal Family and Medical Leave Act provided job-protected leave for up to 12 weeks after the birth of a child and to care for an immediate family member (spouse, child, or parent) with a serious health condition. This act had limited success, in part because there was no provision for paid leave. According to surveys conducted in 2000, 46.5% of employees were covered and eligible, 41.9% had not heard of the law, and many individuals who needed the leave did not take it because they could not afford it. As part of an effort to correct some of the deficiencies in federal legislation, several states developed their own paid family leave legislation. California was the first to offer a paid family leave insurance program. In 2004, non–job protected family leave for workers caring for a child, spouse, domestic partner, or parent with a serious health condition became available. After missing 1 week of work, employees can receive up to 6 weeks of coverage at 55% of pay (maximum $917 per week in 2008). The article in this issue of JAMA by Schuster and colleagues is the first study to evaluate the use of paid family leave among families with a chronically ill child. The authors measured the awareness and use of the provisions of this legislation in a sample of employed parents in California with a child with a chronic illness, both prelegislative and postlegislative enactment, and in a similar control sample of employed parents in Illinois, where there is no similar paid family leave legislation. The program was not associated with increased rates of parents taking leave after the legislation was enacted (81% of parents in California and 78% of parents in Illinois with children with special health care needs took 1 day of leave to care for an ill child before the legislation, and 79% of parents in California and 79% of parents in Illinois did so afterward). Some families should have taken leave but did not for fear of loss of income or job loss or career damage (41% of parents in