Special Needs

Julie Katz adores her 12-year-old son Geoffrey, but shes candid about the myriad challenges of raising him. He has autism.

The Arlington, Va., mother of two juggles his school schedule, doctors appointments and therapy sessions while she also leads a parental support group.

Then there are the almost-daily bureaucratic and personal battles on behalf of her son, who was adopted at birth. "I'm constantly fighting with some agency trying to get services for him, or asking the [latest] coach to let him play," she sighs. "He also needs a lot of one-on-one attention and time from me, and I can't neglect my daughter. I'm often exhausted."

Though Katz once worked full time, Geoffrey's needs have made it next to impossible for her to have a traditional job. She now works from home as a freelance graphic designer and says the family relies primarily on her husbands salary. As a result, they've had to make financial concessions and other sacrifices.

Katz believes her husband's career track has slowed because he curtails business travel and long hours at the office so he can help care for their son. Even so, his work as a financial business manager at a large association means he cant be at home as much as he'd like. Moreover, the family depends on the health insurance his job offers, though they wish it was more comprehensive: Many of their sons treatments and medications are not fully covered. Says Katz: "I think a lot of families are struggling with these issues."

Indeed. Of about 54 million people with disabilities in the United States, more than 9 million are children with special health care conditions such as severe asthma, leukemia, mental retardation and cerebral palsy. About one in five households is caring for a child with special needs, according to the U.S. Department of Health and Human Services (HHS).

Data from The Families and Work Institute in New York, a leading nonprofit center for work/life research, indicates that nearly 9 percent of a given companys workforce is caring for a child with special needs. That would translate into about 170 workers in a mid-size company with 2,000 employees, or more than 40 employees in a firm with 500. Despite these estimates of large numbers of employees with special-needs children, experts say few companies have addressed the increased need for progressive benefits packages and innovative programs for those employees.

Challenges for Employed Parents

While all working parents have needs related to their children, what often distinguishes parents of those with special needs is the intensity. Many of these parents find their career and schedule options limited by all they have to do. At work, they may be distracted by the constant pressure to advocate for their children—making phone calls to health care providers, seeking benefits from local or federal agencies, and arranging appointments with doctors or the school system.

"When you have a child with a disability, your life becomes more complex, from child care to medical issues," says Bob Siegel, a national director with Easter Seals Inc., a Chicago-based nonprofit that champions the disabled. "It can be difficult to put your child first and integrate those needs with work."

In fact, employees with special-needs children have such a difficult time juggling work and care of the child that 30 percent of these parents are forced to scale back at work or quit altogether, according to a 2001 survey by the Maternal and Child Health Bureau, a division of HHS.

Besides ongoing issues regarding their childs health and well-being, parents also may face financial concerns that are different from or more intense than those faced by the average family. For example, parents of special-needs children spend, on average, $326 per month on out-of-pocket medical expenses. (For more information, see "Legal and Financial Hurdles" to the right.)

And, as Siegel points out, finding quality child care can be especially difficult. Although Title III of the Americans with Disabilities Act says day care centers cannot refuse children with special needs, many providers are fearful of watching them, says Siegel.

To address this child care gap, Easter Seals operates a network of 70-plus child development centers nationwide for all children and has staff specially trained to care for those with special needs. "This is an option for working parents," says Dorothy Moser, vice president of human resources and training for Easter Seals headquarters staff. "They're used by the community and by our employees who may have a child [who is disabled] themselves."

Degrees of Difference

In instances where both parents of a special-needs child have little choice but to keep working, they may find some employers noticeably more helpful than others. Consider Paula and Joe Manion of Springfield, Va. She's a nurse practitioner who formerly served in the military and now works in a pediatricians office. He's a retired Air Force lieutenant colonel who now works for a federal agency. Their oldest son, Michael, 16, was diagnosed with a high-functioning form of autism at the age of 2.

"I needed to go to work for my sanity," Paula says, referring to the pressure of raising a special-needs child along with two other children, often while her husband was deployed away from home.

Although Paula feels supported by her medical colleagues who know of her situation, she does not believe the government offers much in the way of additional support for a parent whose child has special needs. "Workplaces have got to support parents like us," she says. "If they don't, they can lose valuable employees —most often women. Says Siegel: "With two working parents, most of the time it's the mother who gives up her career. The child has to come first. But society has to ask, When will we do more for these children and their parents?"

Employers Can Help

Few national surveys have fully explored the extent to which employers have confronted the issue of workers whose children have special needs. But there is anecdotal evidence that some companies have recognized this need in their workplaces and seek to create and maintain a culture where people with disabilities and parents of children with special needs are valued.

In Boston, the Center for Child and Adolescent Health Policy at MassGeneral Hospital for Children is conducting a five-year study that examines workplace options for employees whose children have special needs. The centers researchers are looking at issues ranging from employer-sponsored benefits systems to health insurance coverage. The project involves families, unions, benefits providers and some of the nation's largest employers, such as Ernst & Young, Progressive Insurance Corp. and Raytheon Co. The study so far has found that some employers have helped parents in the following ways:

Establishing parental networks for employees with special-needs children as a way to provide emotional support as well as to share resources on governmental and community programs. Groups usually meet monthly in person or on conference calls, which can provide anonymity to those who desire it.

Conducting on-site special-needs resource fairs where representatives from state and local government agencies, community leaders, and medical experts come to share the latest information.

Expanding health care coverage to include therapies for disabled children, such as applied behavior analysis therapy, which is intensive early training for autistic children that can cost $20,000 or more.

IBM, for example, offers a special children's assistance plan to help defray costs of care not usually included in insurance benefits. The program is designed to cover [health care] costs [up to $50,000 per child] the employee may incur for a child with mental retardation and/or a physical disability, or a child with a developmental disability, says IBM spokeswoman Kendra R. Collins.

IBM also keeps awareness of the needs of disabled children high on its corporate agenda—sending a strong message to employees caring for these children. For example, in 2003, the company held its first IBM Technology Camp for girls with disabilities and a three-day camp for dozens of boys and girls from the Overbrook School for the Blind. The camps are staffed by company volunteers.

There are other, simpler ways companies can reach out to employees with special-needs children by using programs they may already have. For example, flextime and telecommuting are options used by all employees but are of particular value to these parents.

"By the end of 2004, approximately 40 percent of our global population was working remotely," says Johannah Townsend, IBM's manager of multicultural and womens initiatives. "Today, 80 percent of our workforce uses flextime."

Besides flexible work arrangements and financial assistance, companies can provide employee assistance programs (EAPs) and help finding suitable child care. Offering employees clear, accessible information about work/life policies and existing benefits—whether provided by employers, community organizations or public resources—is also helpful.

"Many of these parents assume because they are employed and receive benefits through their employer that they're not eligible for public benefits," says Christina F. Fluet, an expert in pediatric health policy and adult disability services who heads the MassGeneral study. "This is not necessarily the case."

Also, employees whose children have special needs may require greater assistance when comparing various health insurance options. "This is a very significant way in which HR professionals can help," Fluet says. "Misunderstanding the fine print of a plan description can end up costing a family hundreds, even thousands, of dollars in out-of-pocket expenses that might have been covered under an alternative plan offered by the employer."

Even seemingly small efforts can make a major difference in the workplace. For instance, companies can offer a privacy room where employees can make an emergency or necessary phone call.

Privacy is also important in disseminating information to employees. Employers can't require employees to disclose personal details about their families, and many workers feel uncomfortable doing so. But there are multiple options for conveying information to employees, say experts. For example, news and resources can be shared with all employees through lunchtime seminars, workshops, employee parent networks, webcasts, electronic media, intranet resources and printed materials.

Creating value

There is also a business case for making special efforts to retain employees with special-needs children. Parents who have found ways to manage their special responsibilities might be able to apply those particular talents—whether in advocacy, negotiation or multitaskingin their jobs.

One parent who took her experience to work in a big way is Nadine Vogel, a vice president at Metropolitan Life Insurance Co. in Long Island City, N.Y. She eventually created a business unit at MetLife out of what she learned in caring for her two special-needs daughters. "My oldest, Gretchen, was severely disabled with a neuromuscular disorder when she was born in 1991," says Vogel. "She stayed in intensive care for three months and nearly didn't make it."

Eight years later, Vogel and her husband discovered that the child she was carrying—who would be named Rachel—had a heart condition, later diagnosed as Wolff Parkinson White syndrome, which causes an erratic pulse.

"It's really hard to describe all the emotions you experience," says Vogel, who, with her husband, cares for her daughters, now ages 14 and 6. "Initially, it was overwhelming."

But Vogel educated herself and became an advocate—privately and professionally—for families and employees whose children have special needs. She created a business plan for MetDESK, MetLifes Division of Estate Planning for Special Kids. Founded in 1998, MetDESK helps families navigate the legal and financial complexities that often accompany planning for children or dependents with special needs.

The units specialists across the country, including many who have their own special-needs children, are trained to help families plan for long-term care, access government benefits and structure customized financial plans.

About 400 organizations nationwide—Fortune 500 companies, government agencies and others—are enrolled in the network. They receive the free information and disseminate it to employees via workshops, worksite meetings and the Internet. MetLife, in turn, achieves credibility and awareness within those organizations.

Pay It Forward

Companies that provide appropriate workplace support and help ensure that employees fully utilize their existing benefits often receive other payoffs.

Studies show that in addition to increased productivity, greater job commitment, increased company loyalty and higher retention, there's also the potential of a positive effect on the bottom line. A company that enables an employee to stay on the job rather than leave to care for a special-needs child can avoid the high cost of replacing that person—a cost equal to as much as 150 percent of the employees annual salary, according to the American Management Association.

Beyond that, some companies such as IBM believe they will derive long-term benefits from programs that support various outreach initiatives for their employees and others. For example, the company sees its summer camp for children with disabilities as a way to recruit and retain future talent. "By bringing technology to the attention of boys and girls at this early stage in their lives, we hope to introduce them to an exciting field they didn't know existed," says Townsend of IBM.

Whether it's a summer camp or a privacy room for parents at work, experts say, the most important action a company can take is to create a culture and environment that conveys support, understanding and respect for employees whose children have special needs. Fluet will never forget the working father who told her how he had never felt comfortable bringing his son to "Take Your Child to Work Day" because of the child's disability. But this year, after attending a company workshop for employees with special-needs children and realizing that some of his colleagues are in a similar situation, the worker took a leap of faith, she says.

"The employee brought his child to work for the day. The child fit right in,... He was so delighted."

Donna M. Owens is a freelance writer in Baltimore.