Many parents of chronically ill children in California are unaware of paid family leave program

Parents of children with special health needs in California often are not aware that there is a paid family leave insurance program available for their use, with only 5 percent of those surveyed having used the program, according to a study in the September 3 issue of JAMA.

Chronically ill children, or children with special health care needs, comprise 13 percent to 17 percent of children in the United States, according to background information in the article. These illnesses include cerebral palsy, chronic kidney failure, congenital heart diseases, cystic fibrosis, degenerative neurological disorders and malignancies. "Children with special health care needs average 3 times as many medical encounters as other children, account for one-half of child hospital days, and miss nearly 3 times as much school. Their health-related needs create substantial pressure on parents to miss work," the authors write.

In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member, providing 6 weeks of non–job-protected paid leave annually for most part-time and full-time employees at approximately 55 percent of salary. It is a government-mandated insurance program that employees pay for through automatic payroll deductions. This program has been a model for state and federal paid family leave efforts, yet its impact is unknown.

Mark A. Schuster, M.D., Ph.D., of Children's Hospital Boston and Harvard Medical School, and colleagues examined parents' reports of taking leave before the start of PFLI (November 21, 2003 - January 31, 2004; n = 754) and after (November 18, 2005 - January 31, 2006; n = 766) its implementation. The researchers conducted telephone interviews with employed parents of children with special health care needs, randomly sampled from two children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI).

The researchers found that only 77 parents (18 percent) reported having heard of PFLI and only 20 (5 percent) reported using it. California's PFLI was not associated with an increase in the percentage of parents taking leave from before to after initiation of the program. Before PFLI began, 295 parents (81 percent) at the California site and 290 parents (78 percent) at the Illinois site took at least 1 day of leave in the previous year to care for their ill child compared with after PFLI began (327 parents [79 percent] at the California site and 296 parents [79 percent] at the Illinois site).

The Paid Family Leave Insurance Program also was not associated with an increase in the amount of leave parents took. Before PFLI began, 21 percent of parents at the California site and 14 percent of parents at the Illinois site took at least 4 weeks compared with after (19 percent of parents at the California site and 11 percent of parents at the Illinois site). Before PFLI began, 41 percent of parents at the California site and 36 percent of parents at the Illinois site said that at least once in the past year they did not miss work despite believing their child's illness necessitated it. These figures were similar after PFLI began.

"Many factors may explain the minimal use of PFLI, but lack of awareness is likely important. Uptake of new policies generally requires a combination of awareness, low perceived costs (e.g., minimal income loss), and high perceived benefits (e.g., improving children's health, allaying children's fears)," the authors write.

"For policymakers considering paid leave programs, our findings suggest that it is insufficient for employees to learn about the program only when starting a new job or requesting leave. Additional dissemination (e.g., media campaigns, periodic employer-based notification of all employees) may raise awareness. Maximizing uptake of paid leave programs among parents of children with special health care needs may be a particularly important policy goal, given their substantial need for leave."

(JAMA. 2008;300[9]:1047-1055. Available pre-embargo to the media at www.jamamedia.org)

Editor's Note: Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

Editorial: Paid Family Leave for Parents of Chronically Ill Children

"To correct the deficiencies in the use of paid leave, extensive and frequent employee education about the existence of the program must occur," writes John M. Neff, M.D., of Children's Hospital and Regional Medical Center, Seattle, in an accompanying editorial in this week's JAMA. "Ideally, future legislation should ensure that use of these funds will not affect future employment or job opportunities. Other important considerations include length of coverage, the amount of payment, and the funding source."

"An important issue for states to consider is that failure to enact paid family leave legislation will likely increase costs to the state and to the family. Paid family leave legislation provides incentives to keep individuals in the work force, taking advantage of the upfront education and job training that has already occurred. Without such legislation, parents of children with serious chronic health conditions are likely to drop out of the work force and lose employment-based insurance. Medicaid case loads and expenses are likely to increase with increased enrollment of chronically ill children at the high end of the health care cost spectrum."

(JAMA. 2008;300[9]:1080-1081. Available pre-embargo to the media at www.jamamedia.org)

Editor's Note: Please see the article for additional information, including financial disclosures, funding and support, etc.

Source: JAMA and Archives Journals