Glen Allen mom a national spokeswoman for children’s health-care reform

With the current national conversation about health-care reform, Leigh T. Bernard figures this is a rare opportunity.

"This is a once-in-a-lifetime chance for health-care reform," said Bernard, who lives in Glen Allen. "We have one chance to make it right because we're not going to get this chance again."

Bernard is the mother of 7-year-old twin daughters who were born prematurely. One of her girls, Taylor, suffered a brain injury at birth, which resulted in cerebral palsy. She relies on a power wheelchair to get around, except for the shortest of distances, when she can use a walker. She is dependent on the assistance of others for most aspects of daily living.

Taylor is why Bernard was willing to step forward and be one of the national faces for Speak Now for Kids, a new campaign to mobilize families, health-care providers and other advocates on behalf of children and their health-care needs. Bernard recorded a video for the Speak Now for Kids Web site (http://www.speaknowforkids.org). As one of the campaign's "champions for children," Bernard goes directly to the bottom line of her concern:

"If you don't have a healthy child, if you have a child with special health-care needs or a chronic condition, the current system does not meet your child's medical needs, and it's very, very difficult for a family to ensure that their child gets the care they need," she said.

Bernard also participated in a roundtable discussion in Washington on children's health care sponsored by Children's Defense Fund this month and visited Capitol Hill, where she met with legislators.

"She has firsthand experience with our nation's complicated health-care system, its coverage, the high cost of care and so on," said Gillian Ray, a spokeswoman for Speak Now for Kids and its sponsoring organization, the National Association of Children's Hospitals. "She is a courageous advocate, and has been immensely helpful in motivating others to speak up for children."

Ray said Speak Now for Kids arose from a concern that children's health needs would be "crowded out" as Congress deals with reform. She called this year's expansion of the Children's Health Insurance Program "a step in the right direction" but said millions of children remain uninsured and millions more have limited private-care coverage.

Bernard, a physician liaison with Bon Secours Richmond Health System, said she represents middle-class Americans who have private health insurance but whose children's health-care needs are not being met.

Taylor needs therapy multiple times a week, but therapy benefits under her insurance max out less than halfway through the year, leaving Bernard to pay tens of thousands of dollars or to forgo therapy. The same goes for special medical equipment, which each year can cost far more than insurance covers. Support of family and friends has enabled Bernard to cover those bills, but "that's not something the average person can do," she said.

Specially equipped vans and home modifications, such as ramps and lifts, are generally not covered by private health insurance, and many families in such circumstances don't qualify for Medicaid, the government health plan for low-income Americans. Individuals with certain medical conditions can qualify for special Medicaid waivers, but the waiting list in some states can be years long.

At the end of her video, Bernard says: "We need to have universal health care for children that meets each individual child's needs, regardless of location."

Contact Bill Lohmann at (804) 649-6639 or .