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Jacob's Story: Month of the Military Child

In honor of Month of the Military Child, we spoke with Jacob’s mom, Holly. Jacob has complex medical conditions, and getting him the care he needs can sometimes be difficult for this military family.   

 

As I shared with the Speak Now for Kids community last year, my youngest child, Jacob, began having ‘infantile spasms’, a rare seizure condition, that presented as full-body ‘jack knife’ motions five years ago. Our journey into the world of complex medical care began that day, and it has never been an easy one. Jacob has severe brain damage, cannot walk without assistance, uses a wheelchair, has complex communication needs—and the list goes on.  

 

Last year, I talked about how we got a diagnosis for Jacob, described some of the unique problems that can face military families like ours, and gave some tips I hoped were helpful for other families out there. This year, as I sit down to write, I want to illustrate one of these unique issues in more detail. It’s a topic we’ve been spending a lot of time on lately—securing the equipment Jacob needs just to live comfortably and safely in our home.  

In March of 2018, our family ordered three new items for Jacob: an adapted toileting system, a special needs car seat, and a safety bed. After five months of waiting, the toileting system and car seat finally arrived—but the safety bed would prove to be a struggle. We received not one, not two, but three TRICARE denials for it. 

 

For the past five years, we’ve never known if Jacob would have a seizure in the middle of the night. My husband and I have taken turns sleeping with him since he was born. Because Jacob is active yet fully disabled, he is at high risk for falls, entrapment between the wall and the bed, and head injuries. I can’t begin to tell you how many times he has rolled off the bed or gotten stuck between the wall and the bed. We knew we needed this safe place for him to sleep. 

 

It broke my heart to receive TRICARE’s first denial letter. The letter stated, “we do not provide baby cribs for moms and babies.” As Jacob’s mom and number one advocate, I appealed this decision. Not only did I appeal, I reached out to Jacob’s neurologists and physiatrists for another written statement to support the appeal.  

 

Again, Jacob’s safety bed was denied. Again, I appealed. About a month later, I received a manila envelope on my porch. I quickly opened it to find that our case was unresolved and had been sent by the third-party reviewer to an attorney from the Defense Health Agency (DHA) in Colorado to make a final determination. That letter promised a decision for Jacob’s bed within 90 days, but provided no contact information or any other way for me to check the status of the decision.  

 

Eventually, our case was partially appealed in our favor. But we were granted a short side rail for the bed instead of a high-side bed to keep him from falling. Even though Jacob cannot stand without letting go, he’s a climber and a mover. So, I sat down to type up another appeal explaining why Jacob needed a high side bed, not just a short side rail. 

 

On April 1, 2019, guess what was finally delivered to our home? On April Fools’s Day, over a year later, our beautiful safety bed had arrived. After six years of little to no sleep at night, we can finally rest soundly for the first time. The fight for his safety bed was grueling—it was exhausting.  

 

I share all this to show that, when a child has a rare condition, the trajectory is uncertain and the costs are high. While I’m truly grateful for TRICARE, I think there’s room for improvement. The denial letters we received were vague and ambiguous, and sometimes even made me wonder if their second level review medical providers had experience working with children who have disabilities. What if the costs of reviewing and denying our case could have been spent on Jacob’s safety bed or care for another child with a complex medical condition instead? In the end, Jacob has a beautiful, safe place to sleep. However, I’m confident that this case isn’t the last insurance denial we will face.  

 

I had very limited advocacy experience prior to Jacob’s arrival. This little boy has taught me how to empathize and speak up for those who don’t have access to care or the necessary medical equipment to thrive. I’m prepared to advocate for Jacob and kids like him. 


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