Health Affairs Journal Features Medically Complex Child in Medicaid Issue
You may remember Lily as one of the children profiled during March’s Medicaid for Kids Month. Her father, Anthony Putney, shares the family’s story in the July issue of Health Affairs, a peer-reviewed journal focusing on health policy thought and research.
You can watch this recent video that goes behind the scenes of Lily’s daily life.
Lily was born without health issues. As a 15 month old, however, an ear infection spiraled out of control and resulted in “presumed viral encephalitis”—inflammation of the brain—leading to seizures and brain damage. Now nearly 15 years later, Lily remains non-verbal and non-ambulatory, and still suffers from almost daily seizures. She is learning to use a special computer to help her communicate with her parents, siblings, teachers and therapists.
Lily’s parents manage her care needs by coordinating visits with approximately 20 specialists spread across their home state of New Jersey and neighboring Pennsylvania and Delaware. In addition, they face specialized daily concerns for her dental needs, medical equipment, education and transportation, among countless other life details.
“I changed careers because of Lily,” her father Anthony says. “I started in the Navy as an air traffic controller, but now I’m a nurse in the Navy Nurse Corps. Her care is so complex that I felt I needed medical training to help me better understand how to ensure Lily receives the necessary services, supplies and care. ”
Lily is covered by Tricare Standard, which is military health insurance, and she also receives Medicaid to supplement those things that Tricare does not cover. While Medicaid is instrumental in helping Lily gain access to needed medical services, the program presents barriers to coordinating her care—particularly when crossing state lines.
“I’ve been stationed in several states over the years, and each move has meant building another network of specialists, children’s hospitals and schools for Lily, and relearning how to navigate each state-specific Medicaid program to help provide coverage for her care,” Anthony says.
For example, Lily was recently hospitalized for seven weeks at Children’s Hospital of Philadelphia for complications after surgery. “Thankfully, Tricare’s national coverage paid for her care because New Jersey’s Medicaid coverage does not cross over into Pennsylvania,” Anthony says
The experience of Lily and her family speak to the need for improved, expert care coordination able to cross state lines to ensure complex children like Lily can receive appropriate care in a setting with the resources and expertise to meet their specialized needs.
“Every day brings with it a new care coordination problem, from pharmacy issues to diaper delivery to surgery options to rehab coverage. The effort of coordinating care can easily become the hardest part of caring for our daughter,” Anthony says.
“Having a child with catastrophic disabilities is extremely difficult, but we are like any other responsible family. We all have dreams and goals, and, despite Lily’s disabilities, we want her to be a participating member of our family. After all, like each of us, she has something to contribute, and it’s our job to make sure she is able to reach her potential.”