Lissencephaly

Workers with children with special needs have extra needs of their own.

Richard and Dawn Kelso were typical upper-middle class parents living in an upper-middle class neighborhood in a Philadelphia suburb. Richard was the president of a medium-sized chemicals business. Dawn's full-time job was caring for their son, who has cerebral palsy and requires around-the-clock care.

It was the day after Christmas last year when Richard and Dawn packed up their son's toys, medicine and other belongings and drove him to the Alfred I. DuPont Hospital for Children in Delaware. They weren't bringing him there to receive medical care, as they had done many times in the past. They were leaving him there for good. They left a note explaining that they could no longer care for their son. And then they left for the long drive home.

The Kelsos turned themselves in to the police shortly afterward, facing charges of child abandonment and conspiracy. Later, they said that they had been without nursing care over the holidays and were exhausted by the constant medical needs of their son.

The brief national spotlight on the Kelso family highlighted the struggle of the nation's 14.4 million caregivers who are full-time employees while also providing physical, financial and emotional support to a child with a disability. As such, they struggle to serve two masters, says Dr. Paul J. Dulle, executive director of United Cerebral Palsy of Greater Chicago.

Why does this matter to HR? Because nearly two-thirds of these parents nationwide reported that they had reduced their work hours and/or had quit their jobs because of their childrens' conditions, according to a 1999 survey by Family Partners, a collaboration between Brandeis University, Waltham, Mass., and Family Voices, a New Mexico-based advocacy group for parents.

While there are a multitude of agencies that provide support to these families, the services are often poorly coordinated. And there isn't a government agency or nonprofit organization that can deal as effectively as an HR department with the many day-to-day issues that these parents face: insurance, time management and gathering information.

Consider James Robert Merritt, a scientist at Pharmacopeia, a biotech research company in Princeton, NJ. His 2-year-old daughter has the rare condition lissencephaly--which literally means "smooth brain." Her brain is missing the folds and ridges where most higher-level thinking takes place. "Julia will always function at a three-month level, is tube-fed, has severe seizures and probably won't live past her teens," Merritt says. "Nevertheless she has a smile that lights our world and has us tightly wrapped around her tiny finger."

In September 1999, Pharmacopeia began the process of switching health insurance providers in order to integrate health plans with another company it had merged with. Its new carrier, Blue Cross, had lower spending caps than the previous provider. Concerned, Merritt went to HR manager Jeanne Howarth. She began to apply pressure to the transition assistance team at Blue Cross. "We had them make Julia's situation a priority," she says.

The result: Blue Cross made an outright purchase of some of the durable medical equipment that the Merritts had been renting to keep them inside their family spending caps under the plan, and arranged for Julia's special formula to fall under the prescription portion of the plan in order to save the Merritts money.

Howarth says that she doesn't typically get involved in most claims disputes. But in cases like the Merritts, it was obvious that they needed the extra help. "I've managed many cases with a sick child, and I know how hard it is emotionally and financially," she says. "I want them to understand that someone's on their side."

Merritt calls Howarth "his champion." And it's clear that the Merritts aren't just another case to Howarth--he notes that she has a picture of Julia on her desk.

This kind of insurance advocacy is the most important thing that HR departments can do to serve employees who have children with disabilities.

The job starts when choosing an insurance provider, says Rutherford Turnbell, co-director of the Beach Center on Families and Disabilities at the University of Kansas in Lawrence. Go for breadth of coverage, rather than depth, he advises. The best type of insurance for families with children who have disabilities will cover a wide range of treatments: psychiatric care, physical, occupational and speech therapy, and equipment. "Frankly, I don't think there's anything more important to the working parent," he says.

Then get ready to fight for the necessary depth. The high cost of caring for a child with special needs means that these employees will always need special exemptions to the health insurance policy, says Jackie L. Golden, program manager for the National Parent Network, a Washington, D.C.-based advocacy group for families that have children with disabilities.

Even routine well-child visits may require unusual treatments, she says. For example, a typical child may visit the dentist and receive covered services without a problem. But a child with significant disabilities may require an anesthetic just for an exam--and that extra treatment often will not be covered.

These employees need help navigating the insurance maze. The Family Partners survey found that while most parents of children with special needs are satisfied with their health insurance coverage overall, nearly a quarter of parents reported asking for an exception to policy. Sixty-one percent of the quarter who asked were dissatisfied with the outcome of that request.

One extremely important exemption is the ability to keep the child covered with health insurance after that child becomes an adult. Janice Nodvin is the director of special projects at the Marcus Institute, a training and disability advocacy facility in Atlanta. Evan, her 20-year-old son, has Down syndrome, attention deficit disorder and hyperactivity. The health insurance that Nodvin receives through her job will cover Evan as long as he is her dependent, but she points Out that is not the case with many employer-provided health plans.

Home Depot is one company that has extended coverage to adult disabled dependents of their employees. "If an associate has a dependent child that is totally disabled and depends fully on the associate for support beyond age 19, they just have to provide information that verifies that the child is disabled. At that point they get approved to be fully covered under our health insurance plan," says Ileana Connally, director of benefits for the Atlanta-based company. Home Depot did not have to handle any complex negotiations, however, because the company is self-insured.

Insurers allow employers to decide their age limits for coverage, according to Laura Diamond, a spokesperson for the American Association of Health Plans, a Washington, D.C.-based trade association for managed care health plans.

But many states have laws that mandate continued family coverage if a child is dependent and disabled, says Paula Goldberg, executive director of the Parent Advocacy Coalition for Educational Rights (PACER) Center, a disability advocacy group in Minneapolis. Certain requirements may apply, such as employees officially notifying their employer and documenting the health condition in specific ways, so employees should check with their state's health insurance commission for details. (These laws do not apply to companies that self-insure, Goldberg says.)

If an employer chooses not to cover an adult child with a disability, employees' options are to continue coverage at their own expense under COBRA for up to three years, or to turn to publicly funded health care programs.

Flexibility

Imagine this: Your child is on a ventilator and has to be monitored all night so that he doesn't stop breathing. You have a nurse that comes in at 10 p.m. and stays until morning so that you can sleep. But sometimes, that nurse doesn't show up. So you have no choice but to stay up all night and watch your son breathe. The next morning, you have to call work and tell them you won't be coming in because you have to sleep.

This is a situation that one of Goldberg's employees faces on a regular basis. She says that the story highlights the absolute necessity of flexibility for these employees, who have increased responsibility for their child's schooling and health care. These families face even deeper challenges when school's out, according to Jennifer Rickless, manager of knowledge and family programs at the National Multiple Sclerosis Society in Denver.

Providing more flexibility, at least temporarily, is a win/win solution, says Susan Webb, president of Webb Transitions, an HR consultancy based in Phoenix. "Parents have got to be the gatekeeper [of care for their child]," says Webb. "And for those times that they need to gatekeep, the employer has to allow different ways for those employees to get the job done instead of 8-to-5, on my worksite, under my thumb," she says. She also points out that an employee new to telecommuting may need training in computer or time management skills that HR should help coordinate.

Many employees with children who are disabled will eventually be able to get back to their normal schedules, says Sara Brewster, vice president of marketing communication for Easter Seals. "The initial six months after a diagnosis are intense," she says, and will require a lot of employer forbearance. But after that, many employees are able to settle back into a routine.

For those who can't get back to their old routines, something more than flex-time but less than actual leave might become necessary. Ford Motor Co. in Dearborn, Mich., offers its salaried employees the option of paring down their jobs by any percentage, says M. Louis Camardo, equal employment and workforce planning manager at Human Resources Customer Operations. For example, an employee could cut the number of hours worked by 40 percent--and have pay and benefits cut by 40 percent as well. A job-sharing situation is put into place until the employee can return to a full-time schedule, or the situation can become permanent.

But sometimes, family caregivers need more flexibility than employers can allow. In those cases, it is HR's job to gently urge the employees to start thinking about job re-training, says consultant Webb. "A lot of parents don't like to hear that," she acknowledges, bur says that this is the employee's new reality, and that the worker needs to think about how he can remain marketable and attractive to an employer.

Information

HR can also help employees who have children with disabilities by becoming a clearinghouse of information about all the available resources. This could be as simple as a collection of pamphlets of local resources, or as in-depth as contracting with a work/life information service that maintains a good database of resources in your area.

One hurdle: Some employees may feel reluctant to reveal that they have a child with special needs, fearing retribution. "My husband's boss told him if he signed the boys [gravely ill premature triplets] up for insurance through his plan, my husband would be fired," said one woman whose family is part of New Mexico's Family Voices network. "We signed the boys up for insurance and, as promised, my husband was fired." Leaving aside the legality of such an action, stories like this tend to circulate, which could arouse suspicion of HR's efforts to help.

Nonetheless, it's important for HR to try. And at a time when employee retention is a challenge, personal assistance is something that employees don't soon forget, says Easter Seals' Brewster. "You end up building an incredible loyalty to the company that helped you to get through this," she says.

Besides, the overwhelming likelihood is that we all will walk our own mile in caregivers' shoes--whether through birth, accident or old age.

Alison Stein Wellner is a freelance business writer based in Newark, Del.

COPYRIGHT 2000 Society for Human Resource Management
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