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By
Sue Shellenbarger, The Wall Street Journal
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 school."
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 insurance benefits.
The incidence of U.S. children and teenagers with
a disabling condition has tripled to 7 percent
from 2 percent 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 percent 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 percent 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 percent 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 or more.
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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