Thursday, July 27, 2017

Be the advocate

To say I'm frustrated is an understatement. A week ago, I spent over three hours on the phone with Scheck and Siress, Shriners and insurance. We've had one appointment at Shriner's and several at Scheck and Siress, this means that I've driven to Chicago and back at least four times for appointments. I'm lucky that I've been able to work these appointments around my work schedule and that I have days off during the week.

According to many parents in our support group at Camp No Limits, Scheck and Siress should have kicked the prosthetic bill back to Shriners. That didn't happen. Parents told me to talk to them both. When I got home from CNL that's when the calling began. Endless messages, calls, return calls, follow ups, more calls, more time, what felt like a lot of wasted time going around in a circle. My head was spinning and I felt defeated.

When we went to Shriners, we were not told that we would be referred out to someone else (in our case Scheck and Siress) to complete the prosthetic. As far as Shriners was concerned, they were done with us until we followed up after her final fitting. As far as Scheck and Siress goes, they made a product and wanted to be paid. I felt deceived. If we would have gone to her pediatrician here, she could have done the same thing the physician at Shriners did... wrote a prescription for a prosthetic due to her missing her left hand, a congenital anomaly. Instead, we drove 6 hours round trip for them to do it and then send us somewhere else. We could have brought the prescription back home to a prosthetic company that was closer. Instead, Shriners told us to follow the Scheck and Siress rep that was IN our appointment.

Please understand, I'm not bashing either. I'm simply telling you our story and our situation so that other parents in our situation can understand. I hope that this helps others to not be in the situation that we've been in recently. I hope that it can help one family to understand the process a bit better. It's not an easy one. I hope that I can help just one person have a process that's a bit easier than ours.

We are happy with the prosthetic that was created for Bella and it is serving our purpose. Our prosthetist at Scheck and Siress really worked to create a prosthetic that would work for Bella. He was nice and easy to work with. He listened to our thoughts and concerns and hers as well.

We are happy with the physician at Shriners. He didn't do anything "wrong". He simply gave us a prescription and wrote his notes in a way that allowed insurance to see the value of a prosthetic for Bella. This helped us and her to receive her prosthetic.

In the end, this has left us with about $850 out of pocket to Scheck and Siress.

Where does the round robin come in? It comes in because Shriners SHOULD have covered the cost IF they have POPS in their hospital (POPS is the prosthetic, orthotic, place there). Shriners in Chicago recently had POPS fully up and running... one month after our initial appointment. Why didn't they tell us this when we scheduled? "Hey if you wait a month, we can make her prosthetic right here in house and you'll save a ton of money"... it's too bad that conversation never occurred.

What are we finding out? We are finding out that FUTURE prosthetics will be covered IF they are made AT SHRINER'S. We are also finding out that not all Shriner's run the same. They are all different and they don't seem to streamline the process from one location to another.

I spent another hour on the phone just this week, advocating for us and for Bella. They are taking our situation up to the head of the hospital at Shriner's Chicago to see if there's anything they can do to help us financially with the cost of her prosthetic. Each day we live and we learn. In the past few months, I've learned that I will advocate for Bella's needs to the ends of the earth. I will continue to fight for her needs, even if that means exhaustion on my end. Today, I'm mentally and emotionally exhausted. My fight for her doesn't end today. I won't back down, I will continue to be there for her and be her voice!

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