Sharing the Story

Work & Family: Employers aiding parents of disabled children

Thursday, October 13, 2005

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."

Let Me Win

"In ancient Rome, the gladiators went into the arena with these words on their lips: 'Let me win, but if I cannot win, let me be brave in the attempt.'

"Today, all of you young athletes are in the arena. Many of you will win, but even more important, I know you will be brave, and bring credit to your parents and to your country. Let us begin the Olympics. Thank you."

The opening of the Special Olympics 20 July 1968, by Eunice Kennedy Shriver

What Moves Me

I found this while surfing.. of course..

The Rite Stuff

A bar mitzvah represents an enormous challenge for one boy and his family, and spirits soar when he succeeds.

Sunday Boston Globe Magazine, October 19, 2003

I didn’t have a bat mitzvah, and my husband had not been raised Jewish. So why was I insisting that my firstborn son, who happens to be autistic, have a bar mitzvah?

read the rest here: http://susansenator.com/ritestuff.html