Working Parents Finding Support for Their Special Needs Children

The number of children with disabilities has been climbing for more than a decade and that means that a growing number of employees are struggling to care for a child with special health care needs.

About 6 million children in the United States are considered disabled, according to a 2014 study in the Journal of Pediatrics — a 16 percent jump from a decade earlier. And about 1 in 20 employees are caring for a child with a disability or chronic illness, according to Family Voices, a national nonprofit advocacy group for special needs children.

In an effort to alleviate some of their burden, consulting firm Mercer and Rethink, a health technology firm, teamed up earlier this year to offer companies an online resource that features video-based treatment programs, tools to help parents manage behavioral problems, communicate better with school districts, and provides access to remote clinical consultations in addition to other supports.

“The motivation behind this was seeing the explosion in the prevalence of autism and other developmental disabilities,” said Mike Civello, vice president of employee benefits at New York-based Rethink. “One hears from the families and from the clients of Mercer how hard it is to support this population, whether it revolves around finding services or other support for the family. Looking at this increase in prevalence and the dearth of trained professionals to address these needs, whether in school, home or the health care arena, made it clear that something more was needed.”

While Rethink was launched in 2007 to help public school districts provide better support to students with developmental disabilities, awareness is growing among employers, in part because of recent state laws requiring insurers to cover certain autism therapies, he said.

“Employers are going to their benefits departments asking about this, so it’s really only in the last couple of years that we are seeing a desire on the part of employers to do something for employees with children that have special needs.”

The program focuses on developmental disabilities, such as autism and Down syndrome, but Dr. David Kaplan, senior partner and leader of Mercer’s Health Innovation LABS, said that parents of children with any kind of physical or mental disabilities face similar challenges.

“Play dates become more complicated, there are issues with schools around accommodations, and there’s the need to take time off for treatments,” he said. “The general stress level for parents — whether a child has autism or another kind of disability — is the same.”

Kaplan said that these kinds of pressures often result in greater levels of anxiety and depression for parents, in addition to increased absenteeism and higher health care costs. Typically, employers rely on employee assistance providers to help parents, but according to Kaplan EAPs are not specifically trained to deal with issues surrounding disabled children.

According to the National Business Group on Health, nearly half of caregivers of children with special needs require more help managing stress and 40 percent of parents need help balancing work and family responsibilities. The NBGH found that parents of children with a disability lose around five hours of work weekly, totaling about 250 hours per year, which translates to an average of $3,000 to $5,000 per person in lost productivity for businesses.

In addition to making sure that benefit plans cover treatment for various disabilities, Kaplan said that employers could help alleviate some of the stress for parents of special needs children by creating a supportive workplace.

“It’s important to create an open and accepting atmosphere by talking about these issues so parents aren’t suffering in silence,” he said. “If you can create a situation where a parent can go to a doctor’s appointment without feeling condemned, that will make a huge difference for the family.”

Rita Pyrillis is a writer based in the Chicago area. Comment below or emaileditors@workforce.com. Follow Workforce on Twitter at @workforcenews.