It was that time of year again. March came around and we went to CHOC to meet with our team for Paige's annual panel review. We have come so far since the last one that was scheduled a few weeks before her lip and nose repair. We weren't expecting any surprises. Her lip and nose look great. Her palate is fistula (hole) free....She is happy and interactive. Meeting or exceeding most milestones. Since her palate repair she had jumped from 20% to 45% in weight due to more efficient sucking and the increased ability to eat solid food. The plastic surgeon even said the large notch in her gumline seemed to be closing a bit.
Paige drawing at the CHOC appointment
Daddy entertaining her to pass the time.
We see many specialists and doctors at the appt. The whole process takes 2.5 hours.
The tough times....
As parents of a child with a cleft there are quite a few challenging events and experiences that we face, from finding out, to feeding; finding a surgeon, to getting ourselves and our child through multiple surgeries. So as parents of a child with a repaired cleft, we assume our troubles should be much more trivial, yet they somehow can be just as trying to our systems and lives. Our biggest challenge recently, seems to be getting our Speech Therapy group approved by our new insurance as of January 1st. She was supposed to be seen 6 weeks post-op which would have been mid-January. The team agreed again she needs to be seen and evaluated for an early speech stimulation program and on going monitoring since she is missing a few normal consonance sounds and clearly early speech intervention helps children with clefts develop better speech and communication. Other than that she mimics many sounds, communicates with several words and signs and chatters in a conversational style.
When I discovered our insurance didn't cover any of the speech offices that work with our team, I searched for a provider that would be "in-network." My search concluded with finding one in a 25 mile radius. One! I called her and she said she didn't have experience working with children with clefts and I should continue to persue treatment with someone who did and specifically one who worked closely with our team. So I applied to be granted network adequacy. And promptly got denied. Reason: The physician requested is not in-network and there are providers in-network we could see. Oh really? I checked again.....ONE. So I resubmitted the referral request through the pediatrician who sent in more supporting charts and documents, and.......we got denied again for the same reason.
I requested a case manager who said "We are not denying her speech therapy, just denying coverage of the physician you have requested. And since it was already reconsidered and the decision was finalized it probably won't change." Me..."But you only have one person we can see and that therapist doesn't feel that she is adequate to see my daughter. How is my daughter supposed to get proper treatment?"......"Well there is only one more thing you can do. Have the requesting doctor call and talk to one of our medical directors, peer to peer, and have them explain further why she needs to see someone out-of-network." She also wanted me to fax the new notes and directives from our team panel review, having to do with her need for speech therapy with "RECONSIDERATION" in big caps.
I requested a case manager who said "We are not denying her speech therapy, just denying coverage of the physician you have requested. And since it was already reconsidered and the decision was finalized it probably won't change." Me..."But you only have one person we can see and that therapist doesn't feel that she is adequate to see my daughter. How is my daughter supposed to get proper treatment?"......"Well there is only one more thing you can do. Have the requesting doctor call and talk to one of our medical directors, peer to peer, and have them explain further why she needs to see someone out-of-network." She also wanted me to fax the new notes and directives from our team panel review, having to do with her need for speech therapy with "RECONSIDERATION" in big caps.
In the meantime I received a $284 bill for the speech and audiology portion of our Team appointment. I assumed it was all billed through CHOC as one appointment. The specialists were provided to us. We didn't ask and they didn't tell us that they bill separately. We didn't receive a bill last year because our old insurance covered everything. My husband's work even switched to this new insurance because everyone was supposed to get better advocacy and would most likely not even notice a change on coverage.
So here we are about a week after I asked the head of our cleft team, the person I thought had the most weight and opinion about the matter, to call the insurance company directly. I skipped my pediatricians office this time, considering they really are the middle man in all this. And now it is the waiting game again. Please pray that this works because we are about at the end of the line. The next step would be paying out of pocket or going to the therapist they provide anyway hoping she can help somehow make sure our daughter doesn't struggle too much as she acquires language in this critical time. I have never been so discouraged by the medical process. Getting my breast pump required 10-15 phone calls but my stubbornness paid off and I got a good quality one for an entire year. I truly feel that people with less drive, or shyness, or maybe even a language or cultural barrier would just give up and not be able to fight for what their kids need. I am Paige's advocate and I will get her the best I can provide. So for those of you going through your own cleft journey, know that you will get through this no matter how frustrating the process or pain and discomfort you witness your little one go through. It all happens in mini bites and stages. Some hurdles bigger than others. Some mountains. And you will look at your perfect little child and know in your bones all of it will be worth it.
I honestly ask for prayers as we face the next few weeks
and years of getting speech therapy for Paige.
Paige on Easter 2012
