In honor of Military Appreciation Month, Speak Now for Kids is highlighting some very special families. Most military families get all of their health care through the military insurance program known as TRICARE. However, the families highlighted in this series have a child with complex medical conditions who also relies on Medicaid — a program that covers more than 30 million kids nationwide.
Today, we’ll be hearing from Cole’s mom, Stephanie….
Being a military spouse means that you are supporting a mission that extends beyond yourself and your family, and that role can result in unexpected twists and turns. Through my 13 years as a Marine Corps spouse, I’ve lived amazing places, met incredible people and made wonderful memories.
This life has also been accompanied with challenges. During a combat deployment in 2011, my husband and I experienced our biggest challenge to date. Our 2-year-old son, Cole, was diagnosed with an incurable genetic disorder called spinal muscular atrophy at Children's Hospital of the King's Daughters (CHKD) in Norfolk, VA.
The day before Cole was diagnosed, we drove four hours and stayed overnight in Norfolk. We had previously decided it was worth driving so far from our home a few times year for outstanding care at a hospital specializing in children. He was seen by three different neurologists that day. They all spent extensive time examining him and consulting with each other to ensure they were coming to the correct conclusion. The diagnosis meant that his muscles were atrophied and weak and he may never walk.
I remember retreating to the hospital lobby afterwards and falling apart. I was not ready to get back in the car to drive four hours home with Cole because I was an emotional mess. I was in shock about what had just happened and I absolutely sobbed. I texted my husband that I was ready to talk and waited for his call from Afghanistan.
I will never forget breaking my husband’s heart, over the phone, from 6,000 miles away. We had several months left in that deployment and had to find a new normal in the midst of chaos. Life forever changed.
The best way we knew to cope was to figure out a plan of action. We both vowed to never let Cole’s disability hinder his quality of life. We sunk our time into researching the disease and acquiring all the best resources for Cole. We soon realized the value of having TRICARE insurance along with Extended Health Care Option (ECHO), a program designed for active duty beneficiaries with special needs for services and supplies. Cole’s needs were generally covered. However, all insurance has gaps and even military families have to foot the bill for health care at times.
We were very excited to secure orders to Colorado in 2015 for our twilight tour because we heard wonderful feedback about Colorado’s Medicaid program and how they are used to working with military families. Cole’s new providers urged us to apply. I went ahead with the process and Cole was accepted within three months. At that time, I did not yet grasp the incredible Medicaid benefits in Cole’s future.
Soon after arriving in Colorado, we identified an important need for a manual wheelchair. Cole is a very active 7-year-old and he does not see limitations. You would chuckle to see him race around outside with his friends, hopping curbs and tackling terrain in his chair! Like any electrical device, his power wheelchair requires repairs. A broken chair means no play, no mobility. This has become a big factor as he grows, attends school, and cannot be carried. His medical providers determined that a reliable manual chair was needed as a backup.
Unfortunately, TRICARE denied our request for a manual chair because it’s considered a “duplicate service for services previous approved.” He couldn’t have both.
Our disappointment turned to joy when we learned that this manual chair would be a covered benefit under Cole’s Medicaid insurance! This chair meets needs that his electric chair could not. He uses the manual chair daily and we have seen increases in his endurance and strength. He joined an adaptive baseball team and this chair allows the increased mobility he needs to play with his friends. We’ve also used the manual chair a couple times as a backup when his other chair is in the shop. It’s been a blessing in so many ways.
Check back tomorrow for more from Stephanie about Cole and Medicaid.