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Voices for Ohio’s Children Says Thank You

Statewide Newspaper Advertisements Recognize Legislators Who Support Children’s Health Coverage Expansion

BACKGROUND:
Last week, Voices for Ohio’s Children condemned President Bush’s veto of the State Children’s Health Insurance Program (SCHIP). Both Senator Sherrod Brown and twelve of Ohio’s U.S. House of Representatives members, Republicans and Democrats, supported the bill in Congress.

This week, Voices for Ohio’s Children, the state’s leading child advocacy organization, will run advertisements in newspapers across the state thanking the legislators who supported SCHIP. And although the ads contain a long list of advocacy organizations who are grateful to the legislators, their most prominent feature is a photo of a smiling three-year old and a headline that reads “Emily says thank you.”

Emily Demko

After six days in the NICU, the only diagnosis that stuck was Down Syndrome. And so Emily, whom her mother describes as “a happy, healthy little girl with some extra chromosomal material,” was sent home.

The couple rapidly decided that Emily’s special needs and a lack of appropriate child care in Athens County meant that it would be best for their family if Margaret stayed home to care for Emily. She left her job as a prevention specialist with the Ohio Department of Alcohol and Drug Addiction Services—and that ended the family’s health coverage. Margaret’s husband, a self-employed contractor with fluctuating income, has no access to job-related insurance.

Being without health coverage “took awhile to sink in,” Margaret says, especially while adjusting to life with a new baby and learning everything she could about Down Syndrome. But when it did, Margaret applied for Medicaid for Emily; she received coverage beginning in the fall of 2005. Emily began speech, physical and occupational therapy at Columbus Children’s Hospital and made great progress. “Therapy helped Emily learn to walk before the age of 2,” reports Margaret, “which is unusual for a child with Down Syndrome. Her manual dexterity is almost age-appropriate and she’s recovered from other issues typical for children with Down Syndrome.”

But in early 2007, Emily’s Medicaid coverage was up for recertification, according to Margaret, and she was told by a new case worker that her husband’s income was $300/year over the limit for Emily’s coverage to continue. And so, in March 2007, Emily became uninsured. “We tried to appeal,” says Margaret, “but I was out of town when the letter came, and by the time I got home, the deadline for the appeal had passed.” The family has tried applying for a medical waiver—they’re #63 on a waiting list that typically takes three or four people a year. They’ve also tried to get Emily coverage through the Bureau of Medicaid Handicaps, but because Emily doesn’t have any of the chronic health conditions sometimes associated with Down Syndrome, she doesn’t qualify. And they’ve tried private insurance—it’s not available at any cost for Emily, according to the companies they’ve asked.

“Emily needs insurance to cover her therapy,” says Margaret, “and for the ordinary care that all children need. Her therapy costs $479 each week, and it helps foster the skills that will give Emily the best ability she can develop. I want my daughter to become a self-sufficient, productive member of society—she, and other people with Down Syndrome, are capable of that. Therapy helps make that happen, but we need health insurance to help pay for it.”

Emily continued therapy through April and May, and together with visits to the eye doctor and a Down Syndrome pediatrician, the bills totaled nearly $3500. Emily is taking the summer off from therapy while Margaret, a former special education teacher, tries to compensate by providing experiences at home. The family is considering spending down their savings to pay for Emily’s therapy in the fall, but may not be able to afford that alternative. “I’m hoping beyond hope she doesn’t regress,” says Margaret.

In January 2008, Emily should become eligible for Ohio’s new children’s health insurance expansion and once again be eligible to receive coverage through Medicaid/SCHIP. Although that means nearly a year without insurance for Emily, the expansion offers some hope of help for the Demkos. Reauthorizing SCHIP is the best way to make sure that Emily Demko, and other kids like her, grow up as happy, healthy Ohioians.