The image of sweet little Sarah McIntyre immediately came to mind as I read the Pediatrics Journal’s study that showed that children with special health care needs were 57% less likely to be uninsured in 2005 than those in 2001. The Pediatrics report is great news but it should be taken with a dose of caution. CHIP and Medicaid have helped improved access to affordable health coverage for children with special health care needs but those gains can be as precarious as their health so without continued vigilance, this trend could rapidly deteriorate.
The precarious nature of health coverage for children with special health care needs is what brought Sarah to mind. Sarah is a 3rd Grade girl from Yakima, Washington who was born with a hole in her heart and cysts on her lungs. Her life depended on consistent, quality health care that she received through Apple Health for Kids, Washington State’s Medicaid and CHIP program. She lost her health coverage when her parents received modest raises that put their income slightly above the eligibility cap. The McIntyre family went through a difficult period in which Sarah was uninsured. Fortunately, Washington state expanded coverage to families earning up to 300% of FPL with the help of increased federal funding included in CHIPRA and Sarah was able to enroll in Apple Health for Kids once again.
There are many more Sarah McIntyre’s out there. According to another report in last month’s Pediatrics, approximately 1 of every 7 children in the United States has special health care needs. Children with special health care needs are those who are at increased risk for a “chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally”. They are at greater risk for unmet health care needs and, on average, expenditures for their care are about 3 times higher than for other children. Their families oftentimes must rely on Medicaid or CHIP programs to find coverage. (Medicaid coverage is a better fit because it is more comprehensive than CHIP and provides an important lifeline to children whose health care needs are often greater than the norm and whose families’ limited incomes make it difficult for them to afford uncovered health expenses.) There are also many children with special health needs who remain uninsured because insurance providers will not accept them with a pre-existing condition or because their families can’t afford the high private health insurance premiums to get the coverage their children need.
Sarah’s story and the Pediatrics reports remind us of what’s at stake in the health reform debate for families of children with special health care needs.
