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Disabled, Ill Kids Pose Workplace Challenges

January 28, 2009
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The population of special-needs children is rising, but few U.S. employers realize how that group affects the workplace, experts say.

According to the Boston-based Center for Child and Adolescent Health Care Policy, an estimated 8.6 percent of U.S. workers care for a child younger than 18 with physical or mental disabilities or chronic conditions. That has tripled since 1960, the organization says.

Further, nearly 24 percent of such families said the condition caused family members to reduce their work hours or stop working, the U.S. Department of Health and Human Services says.

Eileen Brennan, associate dean of social work at Portland State University in Oregon and co-principal investigator of the Work-Life Integration Project at the university's Research and Training Center on Family Support and Children's Mental Health, says more employers need to be aware of the prevalence and strain of being a working parent with a special-needs child.

"It affects so many people in this country," Brennan says. "As doctors are able to save more children [born prematurely], and children with special needs are not institutionalized as much and are living in communities, many more employers really need to be aware of this."

Parents of such children experience a host of workplace quandaries. The Sloan Work and Family Research Network in Boston estimates that nearly 14 percent of parents need more than 10 hours a week to coordinate their child's care, and 25 percent have been fired at least once due to their child's exceptional care needs.

"Depending on the level of care that's needed by the child, it can be a pretty demanding, unpredictable stressor for these employees," says Judi Casey, principal investigator and director at Sloan.

Experts say a lack of communication between employers and employees often hinders progress on these issues. Companies are concerned about their employees' privacy, says Janice Dragotta, a senior consultant for health and productivity at Watson Wyatt Worldwide in San Francisco. Employees are worried they will face scrutiny if they openly discuss their child's condition, Casey says.

Dragotta says employers need to facilitate an environment in which all employees believe they can be open about their personal circumstances. Allowing flexible work schedules and sick leave policies are ways to support a wide range of employees, including those with special-needs children.

Flexibility essential

Ophelia Galindo, national leader of the absence and productivity solutions group at Buck Consultants in Los Angeles, says flexibility is what parents of such children need most.

"Flexibility is the key word," Galindo says. "With a special-needs child, there is some unpredictability around their needs."

She says employee assistance programs are companies' most common form of support, but some companies go beyond EAPs and offer specific programs.

New York-based professional services firm Ernst & Young established a network for such employees. Services include telephone conferences on general and condition-specific topics such as Down syndrome and autism, as well as consultation and support around estate planning, internal and external benefits as well as resources. It also sponsors parent mentoring, whereby experienced families mentor parents with newborns or children just diagnosed with special needs.

Newark, New Jersey-based Prudential Financial Inc. also offers a support network for its employees with special-needs children. The group goes beyond educating those directly affected by such circumstances. It informs the entire organization about this population's challenges, helping colleagues to understand and empathize rather than judge a co-worker for frequent absences or need for more flexible schedules.

Additionally, Prudential's employee assistance and work/life programs offer emergency backup child care, referrals to services such as summer camps geared for special-needs children and a limited number of free counseling sessions. Maureen Corcoran, Prudential's vice president of diversity, says offering such programming helps the company keep its most valuable employees.

"Employees tell us they stay because they are supported," Corcoran says. "I've had people tell me often that they know that if they left the firm, they wouldn't get the flexibility or understanding around their particular life situations."

The Canada Post Corp. in Ottawa supports its employees with special-needs children who also are members of the Canadian Union of Postal Workers and the Union of Postal Communications Employees by funding two programs developed and delivered by the former.

The first program offers direct support from special-needs advisors; $100 each month for each member with a special-needs child to offset extraordinary costs such as respite child care, transportation and uninsured health expenses; information and resources, including a newsletter; and a Web site to connect with other parents.

The second program supports union members who have disabled children transitioning from youth services provided before age 19 to adult services. It provides information, resources and financial support similar to those in the first project.

Jamie Kass, national child care coordinator for the Canadian Union of Postal Workers, says the programs help with employee retention and productivity.

"All of those kinds of things help to make workers more effective at work," Kass says. "I think it's made a big difference in terms of people's morale and how they feel in the workplace."

Watson Wyatt's Dragotta says employers and employees benefit from such supportive work environments.

"If an employer is able to offer some supports, it really becomes a win-win, because the employee has that fabric of support and resources they need, which I think, in turn, translates into the employee being able to be at work and focus on work," she says.

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