Youth Justice


Leigh Bernard expects her seven-year-old twin daughters Taylor and Sydney to grow into productive, self-sufficient adults. That shouldn’t be an unreasonable expectation as they’re both bright, active children who are doing well at their school in Glen Allen near Richmond, Virginia. But Taylor suffers from cerebral palsy brought on by a brain injury at birth, and the challenges of receiving adequate health care have threatened her chances of achieving her mother’s dreams for her future.

The private health insurance plans Leigh has had through her employers were never enough to cover Taylor’s therapy for a full year. Leigh has had to pay tens of thousands of dollars out-of-pocket for the care and equipment her daughter needs, leaving her financially strapped. While Taylor’s cerebral palsy doesn’t impede her ability to succeed academically—she’s an excellent student who reads at the fifth grade level—the chronic disorder significantly diminishes her motors skills requiring her to undergo a great deal of expensive care. She needs physical and occupational therapy several times a week to strengthen her muscles and improve her ability to navigate and to assist with activities of her daily life. Taylor uses a walker for short distances and needs help with physical functions such as bathing, getting in and out of her motorized wheelchair and using the toilet.

Making sure Taylor’s medical needs are met has been a financial nightmare. Leigh’s private insurance policies either imposed caps on the number of therapy visits or the dollar amounts that could be spent on treatments. The therapy benefits maxed out at three to six months each year, leaving Leigh with the grim choice of forgoing treatment for Taylor or paying for it out-of-pocket—about $30,000 a year.

The different types of equipment Taylor needs cost thousands of dollars. In addition to the wheelchairs she will grow out of, she requires ankle-foot braces (for about $1,000) sometimes twice a year, a new walker annually and a stander. If insurance plans cover any of these items at all, they contribute only about $1,000.

Tens of thousands of dollars have been spent on environmental modifications to the family’s home and van, such as ramp/lift systems, a stair lift, a bath lift and toilet modifications. At 66 pounds, Taylor is getting too heavy for Leigh to carry up steps or lift into a tub. The state of Virginia had provided an allowance of $5,000 for these modifications but that provision has been eliminated in 2009 by state budget cutbacks. The family has received no reimbursement for these items from their insurance companies.

Seeking financial relief from this growing burden, Leigh applied for Medicaid, a public program that provides coverage for low-income children and pregnant women. Taylor normally wouldn’t be eligible for Medicaid because Leigh earns more than the program’s income limits as a physician liaison with Bon Secours Richmond Health System. However, Taylor is eligible through a waiver for children who are developmentally disabled. After a series of bureaucratic mixed signals and three years on a waiting list, in 2008 Taylor was enrolled in Medicaid. With this coverage, she is finally receiving the services so vital to her health and development.

Because of Leigh Bernard’s courageous and persistent advocacy and the financial help of family and friends, her daughter Taylor now has the health care she needs. She faces encouraging prospects and has an excellent chance of growing up in a caring and nurturing home. Without adequate coverage, however, she could lose the treatments and equipment now available to her and end up in a long-term care institution, shrinking her chances to grow into a contributing adult as her mother hopes.

Unfortunately, many middle class families with children who have chronic disorders face being wiped out financially because too few private insurance companies cover the medically necessary care they require. In the vast majority of these cases, their incomes are too high for them to be eligible for Medicaid or the Children’s Health Insurance Program (CHIP). But they don’t have the economic resources to cover expenses their insurance companies fail to provide. Some live in states that don’t provide Medicaid waivers for children like Taylor. According to a Harvard University study, 62 percent of all personal bankruptcies filed in the U.S. in 2007 were caused by medical problems, and more than 60 percent of those who filed had private health insurance at the start of the illness.

Statistics like these are unacceptable. It shouldn’t be the case that so many American families trying to provide their children the care they require meet with financial disaster.  We can no longer say to hard working, underinsured families that play by the rules: “Tough luck, you have no other options.” If the private insurance industry won’t cover all children with chronic disorders, our government should provide a public health insurance option that will. We’re certainly smart enough to figure out how to do that.

Email your Members of Congress today to let them know that affordable, comprehensive health coverage for everyone—especially children—is important to you at: