85 percent of uninsured children live in working families for whom private health coverage is financially out of reach.
Jyla and her family live in a modest attached home in a subsidized housing development on the east side of Kalamazoo, Mich., as Pulitzer Prize-winning reporter Julia Cass learned when she met the family while on assignment for the Children’s Defense Fund. Amy grew up in a two-parent household, graduated from high school, and attended a junior college. What stopped her upward trajectory was her health. At about the time Cornez, 11, was born, she came close to death from an enlarged heart and irregular heartbeat. For a while, she was on the list for a heart transplant and was in and out of the hospital.
Jyla’s serious needs also make it harder for Amy to get ahead because they require so much extra time and attention. Amy realized something was wrong a few months after Jyla was born. “She didn’t use the left side of her body,” she said. “She didn’t reach like a normal baby. She didn’t want to interact as much, and she was in pain a lot of the time.” Amy began taking her to specialists who diagnosed her with cerebral palsy and juvenile arthritis. Just recently, doctors discovered the holes in her spine. “They think she may have spina bifida,” Amy said. She takes Jyla to specialists in orthopedics and rheumatology in Ann Arbor two or three times a month who help ensure she has the equipment she needs including a special stroller and back and foot braces.
Now that Amy’s own health has somewhat stabilized – she had a minor stroke a few months ago – she’s also back on the path she had to abandon 11 years ago. She is attending Kalamazoo Valley Community College and studying health care administration with the aid of a Pell grant and student loan. The loan is part of the family’s income, along with Jyla’s $674 a month in Social Security disability. They also get food stamps. “Some people ask me why I don’t apply for disability myself,” Amy said. “I want to work. I can’t stand or lift or push or pull, but I think I can be in a doctor’s office coding and billing.” She goes to college part-time because of Jyla’s needs. Jyla often wakes up in pain at night, and that keeps Amy up as well. Some days, especially when the weather is cold, the arthritis is so painful that Jyla doesn’t go to school at all. Jyla’s brother Cornez is an “A” student who proudly displays an award for outstanding academic excellence signed by President Obama and dreams of going to Morehouse College and owning a small business someday. Amy’s dream is to do everything she can to give both of her children the best chance to “excel in life.”
Amy faces uphill challenges, but is also getting important help – and Medicaid is a key piece of the family’s puzzle. Medicaid and CHIP keep health coverage stable for children during tough economic times, and as debates over the budget begin again, any cuts to Medicaid would disproportionately harm low income children, children with disabilities, and children in communities of color who are more likely to suffer from poor health. Medicaid and CHIP work and are critical lifelines in hard times for millions of families like the Bells.
Marian Wright Edelman is the president of the Children’s Defense Fund.