Shelia Spain
Chelsey Spain, the daughter of Sheila Spain, is an energetic and outgoing fifteen-year-old girl from rural West Tennessee. Chelsey was born with a malformed heart, suffered four strokes at the age of three, and has seven heart defects. After eleven years of therapy, through Chelsey’s hard work and Sheila’s commitment to her daughter, Chelsey has been able to make great progress.
Sheila’s hope for Chelsey is that she will be able to achieve independence, and one of the tools that Chelsey needs to achieve this is a specific kind of wheelchair, a “stander,” which would allow Chelsey to stand. This type of wheelchair would enable her to do everyday activities like get to the top shelf of the refrigerator to pick out the snack she wants or pick out her clothes for school. The stander would also strengthen Chelsey’s physical condition because standing helps her leg muscles develop and improves her circulation, which helps prevent blood clots.
In 2006, TennCare denied this type of wheelchair for Chelsey. Not willing to give up, Sheila appealed the denial and won at her hearing. However, the judge’s favorable decision was overturned by TennCare. Eventually the medical equipment provider donated the features to Chelsey that TennCare had denied, which allowed her to have the option of standing.
After five years, Chelsey outgrew her wheelchair and needed a larger one. Despite a doctor’s order, TennCare would only pay for a wheelchair with a basic stander. A basic stander would put pressure on Chelsey’s pacemaker, which is located in her abdomen because of scar tissue around her heart. This would put Chelsey at risk of damage to her pacemaker, and would likely cause pain and internal pressure sores. A basic stander would also prevent her from standing appropriately, which might cause her legs to atrophy and would triple her risk of blood clots.
Sheila prepared to battle TennCare once again, saying, “I have had to fight for Chelsey since the day she was born and today is no different.” In early 2011, Sheila filed an appeal for the special type of standing wheelchair that Chelsey needed and was granted a hearing. Soon after, she contacted TJC for help. TJC found a pro bono attorney to attend the hearing with Sheila. To prepare for the hearing, Sheila compiled medical records, letters, and documentation from various providers and Chelsey’s teacher, to show why Chelsey needed this special device.
Sheila also advocated for her daughter by contacting the Governor and her state legislators so they would look into her daughter’s case. Two weeks after doing so, TennCare called Sheila’s pro bono attorney and said that if the appeal was dropped, they’d cover the special stander that Chelsey’s doctor had prescribed.
Because of Sheila’s relentless efforts and commitment to her daughter, Chelsey now has the equipment that she needs. She says, “It was by my efforts and the efforts of the Tennessee Justice Center that we were able to help my daughter get the care she needed.” With the proper stander, Chelsey remains independent and can continue to grow stronger and thrive.
Photo Credit: Meropi Falkenburg
