A parental juggling job
Workplace stigmas add to struggles of people with disabled children
First in a two-part series on caring for children with disabilities
Meg Comeau has flexible work, good family health insurance through her husband's job, and the right schooling for their daughter. Yet life, she says, is still a "house of cards."
Her 21-year-old daughter, Sarah, has Prader-Willi syndrome, a rare genetic disorder that produces developmental delays and health issues and is similar to Down syndrome. For the first decade of Sarah's life, she required so many surgeries and so much care that Comeau couldn't work. Even now, although Sarah attends a special needs school, her complex condition requires Comeau's frequent absence from her job as a university administrator.
"If I wasn't able to have that flexibility, her care would suffer," says Comeau, project director of the Catalyst Center, a federally funded Boston University working group that helps states improve financing for families with disabled children. Her husband, Robert, works 6 a.m. to 2:30 p.m. as a manager in an electronics firm, so he can pick Sarah up from school. Outside of school, "one of us is always with her," says Comeau.
Largely hidden from view in workplaces across America are millions of parents like Comeau struggling with a herculean work-life challenge: caring for a special needs child. Because they often suffer discrimination or have to cut back on work, these families are more likely to be poorer than those raising children without disabilities. Alongside all the intangible rewards and the bountiful love in these families, there is hardship: careers are cut short, finances are put in disarray, life is chaotic.
Nearly 14 percent of kids up to age 17, or about 10.2 million children, have special healthcare needs, which is defined as a chronic problem that limits activities or demands extra healthcare, according to 2006 government data.
In any given company nationwide, 8.6 percent of employees care for such children, according to Massachusetts General Hospital's Center for Child and Adolescent Health Policy. And this population is growing, due to rising rates of childhood asthma, diabetes, and other chronic health problems.
This summer, Governor Sarah Palin of Alaska, mother of an infant with Down syndrome and the Republican vice presidential nominee, spoke out on the campaign trail for families with special needs children, her son Trig often by her side.
Still, many parents of children with disabilities remain afraid to go public with their situation at work.
"A lot of parents won't disclose this because of the fear of stigma, not wanting to be perceived as different or unreliable," says Julie Rosenzweig, a longtime researcher into the work-life challenges of special needs families. As well, their careers may suffer. "They will take jobs that step out of their career, skip over promotions, turn down travel opportunities," she says.
Even the growing availability of flexible work and leave options doesn't always help such families. Such benefits often "are used on a short-term basis, such as when a mother gives birth or for short-term, easily resolved issues," says Rosenzweig, an associate professor of social work at Portland State University in Oregon. "They are not designed for parents with children with disabilities" who often need unpredictable, crisis-driven care.
As a result, 27 percent of parents caring for children with serious emotional and behavioral disorders have been terminated because of related work disruptions, according to a 2004 survey of nearly 400 such parents by Rosenzweig and colleagues. Because of the demands of care, nearly half of the parents had to quit a job to care for their children, and 11 percent couldn't find work.
While such parents tend to face greater stigma than those whose children have physical disabilities, both groups often have difficulties finding and keeping work because of their child's condition, Rosenzweig says. More than a fifth of families raising children with disabilities live in poverty, compared with nearly 13 percent of families raising children without a disability, US Census data show.
Sara, a Boston mother of a 7-year-old with cerebral palsy, patches together 15 to 20 hours of work from four different jobs as a home health aide, in order to care for her son and his two siblings, ages 9 and 5. An Eritrean who prefers semi-anonymity because she is a political refugee, Sara senses that she's been turned down for multiple jobs because she revealed her son's condition in interviews.
"It's very hard to understand when you don't have a child with this situation," says Sara, whose husband works overnight stockroom shifts at a Target store so he can help care for his son. "At the moment, I can't work full time."
Legally, parents caring for children with disabilities have some protection against discrimination. Amid rising claims by working caregivers in general, the federal Equal Employment Opportunity Commission issued guidelines last year to detail how laws banning discrimination based on sex or race protect such workers. For instance, a new mother who is placed into less desirable work because her boss assumes she is less serious about her career post-birth is protected against sex-based stereotyping under Title VII of the Civil Rights Act of 1964.
As well, the Americans with Disabilities Act outlaws discrimination against caregivers to the disabled, although it doesn't require that employers accommodate them by changing schedules or job duties, as is mandated for workers with disabilities.
After her daughter moved from public school to the private Cotting School in Lexington in 1996, Meg Comeau returned to work, earning a master's degree in healthcare administration on the side.
Along the way, she carefully sought flexible work in a field she knew would be understanding. But she also believes that her career has been slowed by her long absence from the workforce.
"I should be at a different level of authority, compensation, benefits," she says. "My career is much further behind."
Maggie Jackson is the author of "Distracted: The Erosion of Attention and the Coming Dark Age." She can be reached at www.maggie-jackson.com.