Offering Assistance to Parents of Kids with Disabilities
Sue Shellenbarger, The Wall Street Journal Online,
October 14, 2005
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For years, David
Bruesehoff hesitated to tell anyone at work about his daughter,
Karissa, who has autism and Down syndrome.
At his company and many others, "it's the 'culture of the
smart,' " the Dallas father says. "It can be hard when another
parent is talking about his child getting into prep school, and
your child's big accomplishment is getting on the bus to go to
A code of silence has long kept parents of children with
disabilities, from autism and Down syndrome to cerebral palsy
and depression, from talking about their kids at work. Now,
driven by growth in their numbers and in the cost of raising
special-needs children, some of these parents are starting to
"come out" at work. And a handful of employers are stepping up
to help, with support groups, informational meetings and
The incidence of U.S. children and teenagers with a disabling
condition has tripled to 7% from 2% in 1960, based on data
published in 2000 in the Archives of Pediatric and Adolescent
Medicine, reflecting increased survival rates and a rise in the
diagnosis of conditions such as autism. Today, an estimated one
in 12 U.S. workers has a child with a disability or special
need, says MassGeneral Hospital for Children, Boston, which is
conducting a five-year, federally funded project to examine
workplace supports for these parents.
"Stigma and fear of reprisal" have kept many workers from
disclosing their family situations, says Chris Fluet, director
of the MassGeneral project.
The risks of speaking up are real: Soon after Kevin McGarry,
Hyde Park, N.Y., started asking questions about insurance
coverage for his disabled daughter on a previous job as a
paralegal in the mid-1990s, his supervisor got upset and told
him to stop asking for benefits. "They didn't want my health
insurance company to get wind" of the rare syndrome his daughter
had from birth. Although his performance previously had drawn
praise, he says he soon started getting negative feedback.
Eventually he was laid off.
Having a child with a disability also requires time and effort
to find and manage treatment, forcing 30% of these parents to
quit or cut back at work, says a 2001 survey by the federal
Maternal and Child Health Bureau.
Few parents can afford to cut back. More than 40% of families
with special-needs kids have financial problems because of care
costs, says a study published in June in Maternal and Child
Health Journal. And 60% of children with special needs rely on
their parents' employers for health insurance, MassGeneral says.
Now, some parents are taking the opposite tack -- turning to the
workplace for support. After her autistic son was born 11 years
ago, Kathy Gonzalez, a technology manager at Toyota Motor Sales
USA, Torrance, Calif., was overwhelmed trying to find treatment
for him. Seeing her co-workers networking on other topics, she
helped start a support group last year at Toyota that draws up
to 40 parents of special-needs kids to its monthly meetings. "If
I could help even one parent get on track for whatever service
they need for their kid, it would be worth it," Ms. Gonzalez
says. At Microsoft, employees with autistic children have formed
a similar network.
Jack Harris, whose 11-year-old son is autistic, was startled to
learn during on-site meetings of a father's network at
PricewaterhouseCoopers's Tampa, Fla., office, that 10 of the 50
other men there also had children with disabilities. With
PricewaterhouseCoopers's blessing, Mr. Harris, a practice
support manager, is planning an on-site special-needs resource
fair early next year. The firm is looking for other ways to
support such parents, a spokeswoman says.
In recent years, Mr. Bruesehoff gradually began talking about
his daughter on his job in Los Angeles for accounting firm Ernst
& Young. Then, when he was offered a transfer to Dallas in 2002,
"I decided I was just going to come clean" and explain that the
availability of programs in Dallas for Karissa, now 17, would be
pivotal. Co-workers responded warmly, helping his family forge
new ties in Dallas, where he now works as a human-resource
manager, he says.
Mr. Bruesehoff is among 64 parents of special-needs kids who
have joined a parent network formed last January by New
York-based Ernst & Young. Sandra Turner, a human-resource
manager, says parents on the network's informational conference
calls are slowly opening up to each other. While fewer than
one-fifth were willing to give their names on the first call,
about half now feel comfortable identifying themselves.
Raytheon, an aerospace and defense contractor, has hosted
several speaker dinners for employees with special-needs
children at its Tucson, Ariz., and Woburn, Mass., facilities.
Jeff Stolz, whose son Joseph, 10, has autism and bipolar
disorder, was among those attending. Heartened to learn many of
his co-workers also had special-needs kids, Mr. Stolz for the
first time took Joseph in April to the annual "Take Your Child
to Work" day festivities at Raytheon. He was apprehensive;
Joseph verged on a tantrum during an introductory session. But
as the day wore on and supportive adults reached out to him,
Joseph calmed down, and even introduced himself by microphone at
the closing session.
In a surprising move in today's cost-cutting climate, a few
employers are even expanding insurance coverage for
special-needs kids. Microsoft, oil-industry supplier
Halliburton, and insurer Progressive Group have begun covering
some of the cost of applied behavior analysis, or ABA therapy,
intensive early training for autistic kids that can cost $20,000
These employers, of course, are the exception. If you have a
child with a disability, only you can size up your corporate
culture. A MassGeneral manual offers tips and resources,
available online at
www.massgeneral.org/ebs by clicking on "Resources for
Employees," then opening "workplace benefits."
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