Navigating the healthcare system is never an easy task. For Ashley Schmucker, it has been a frustrating and time-consuming process. Ashley and her husband, Joseph, have four children: three daughters and one son. Their son, Elliot, and their youngest daughter, Lainey, have been diagnosed with Chiari malformation which means their brain tissue is extending into their spinal cords. While Elliot is “seven going on 67”and has an old soul, Lainey is their “spitfire, sour patch kid, and comedian” and keeps everyone in the household on their toes. They are quite opposites but loved dearly. Ashley says being a mother means “your heart is living outside your body. When you have little humans walking around, your heart goes with them, and your entire universe revolves around them. That’s what it means to be a mother.”
Chiari malformation is a rare condition and finding quality, expert-level care took quite some time, but Ashley did it for her children. After Elliot’s diagnosis in 2019, the Schmuckers took him to multiple neurologists and neurosurgeons in Knoxville, Nashville, and Memphis, but they were only able to do so much. Elliot had one brain surgery in June 2019. Afterwards, the family was told by a neurosurgeon in Memphis that they were unable to assist anymore. Since there were no neurosurgeons in Tennessee that could help, the family needed an out-of-state neurosurgeon. Elliot’s pediatrician recommended a neurosurgeon in New York. TennCare denied the family’s request to go to the out-of-state provider. The family decided to pay out of pocket for a consultation with the neurosurgeon in New York and he let them know Elliot needed an intercranial pressure monitor and a decompression surgery.
The New York neurosurgeon was able to help Elliot, but TennCare was not cooperating. In August 2020, the family filed an expedited appeal to combat TennCare’s denial. A judge decided in a hearing that Amerigroup, Elliot’s TennCare Managed Care Organization, had until November 2020 to find an in-state neurosurgeon who could perform the medically necessary procedures, or they would have to approve the New York neurosurgeon. In December 2020, TennCare finally approved the procedures and the New York Neurosurgeon.
Sadly, this was not the end to the Schmucker’s troubles. TennCare and the hospital the neurosurgeon was going to perform the surgery at could not come to an agreement. This meant TennCare would only pay for the neurosurgeon, travel, and lodging. TennCare refused to pay for the hospital fees which totaled $109,000 with a $50,000 deposit. Elliot could not wait any longer for the surgery and per EPSDT guidelines he should not have had to in the first place. Mrs. Schmucker said due to the malformation, he was not able to walk most of Christmas’ Eve, a day that is usually filled with joy. Thankfully, an extended family member was willing to pay the $50,000 deposit for the family and they scheduled the surgery for January 2021. After multiple emails between TennCare and TJC, the hospital and TennCare were able to come to an agreement in March 2021. By this time, the family had already paid the $50,000 deposit and were worried about future procedures Elliot needs from the New York neurosurgeon. They needed to be reimbursed, but more importantly they needed confirmation from TennCare that they would not have to go through this year prolonged process again just to get their son the care he needs.
In July 2021, the family finally received reimbursement of the $50,000 deposit and have been able to continue seeing the New York neurosurgeon with minimal issues. Mrs. Schmucker thanks TJC and noted that “if it weren’t for TJC I don’t know what we would have done because TennCare told us no at first. This all would be impossible.” This process took almost a year. It should not have.
In January 2022, Ashley reached out to TJC again for her daughter, Lainey. Lainey had been diagnosed with a Chiari malformation as well. The family was already getting some pushback from their MCO on if Lainey could see the New York neurosurgeon. They were worried they would have to go through the same hoops they went through to get Elliot his care. Thankfully, it was a much quicker process. TJC was once again able to write to TennCare and get the neurosurgeon approved for Lainey.
Mrs. Schmucker says that many parents of children with Chiari go through similar difficulties with long wait times and constant denials on top of being unable to find quality providers who listen and understand parents know their children best. Ashley does whatever it takes to get her in children the quality care they need. TJC is honored to have Ashley Schmucker as a 2022 Mother of the Year!
Photographs by John St. Clair