Sit back and relax… go get something to drink if you like…this is going to be a long one.
I feel it is my duty as a parent and care-giver to a child with special needs to educate you on my recent and quite outrageous dealings with another world also known as HMOs . Although I’m somewhat superstitious about dishing out these details before receiving final "authorization approval," I feel an urgent need to tell you about all the crap we’ ve been dealing with of late regarding Jenelle’s insurance. You will be amazed, outraged, and you will shake your head.
As you can imagine, Jenelle has a lot of specialists and is routinely seen every 6 months or so. She has a lot of appointments coming up, and the most important being with our beloved Dr. Shields at UCLA at the end of this month. Unfortunately, I’ ve been trying to get this appointment approved by our insurance since approximately March of last year.
Let me give you some background. At the beginning of 2006, our insurance switched from Health Net HMO to Blue Cross HMO. Yes, I’m using the company names here because I think it is the public’s right to know what these companies and the medical groups that subscribe to these companies are forcing their patients to do. While with Health Net, Jenelle was a member of a medical group known at "Gateway." Hopefully if you are familiar with HMOs , then you will know what a "medical group" is; basically it is a group of doctors for Jenelle that are considered "in network" and thus OK for Jenelle to see assuming her primary care doctor has referred her properly.
As you can imagine, Dr. Shields at UCLA is not a member of our local network. In April 2004 our original Neurologist (who was a member of Gateway medical group) officially referred her care to Dr. Shields at UCLA (a.k.a. "out of network") and all was well in the HMO world. This referral was appropriate because he had exhausted all of his expertise, and Jenelle is simply too complicated. When our insurance changed in 2006, Jenelle’s "medical group" changed as well from Gateway to St. Joseph Affiliated Physicians. Basically, same doctors, different group. Our problems lie more with St. Joseph than they do with Blue Cross. Both Health Net and Blue Cross have been great about paying the bills, though I think Health Net was a little better, in my opinion.
When the transition was made from Health Net to Blue Cross, Jenelle was already an established patient with Dr. Shields and had appointments pending. Blue Cross provided us with a "transition" assistant who approved her existing appointments to UCLA back in February 2006, and allowed us one follow up visit which occurred in July 2006. Initially, St. Joseph denied the request but Blue Cross over turned that decision. So, this meant that our upcoming appointment for 2007 were not yet approved. When her primary care physician submitted the request for the appointment with Dr. Shields, it was immediately rejected by St. Joseph.
I made many calls to protest. I even got a letter from the head Neurologist at CHOC (the "in network" Neurology Clinic) confirming that Jenelle’s Epilepsy was best treated at UCLA. None of this worked. Officially, St. Joseph demanded that Jenelle be seen by a Neurologist "in network" first, before they would approve her to be seen by Dr. Shields. After I realized they weren ’t budging on the issue, and knowing we were quickly running out of time, I then made numerous calls to CHOC Neurology and to our primary care doctor to try to get Jenelle seen as quickly as possible. Of course, that visit had to be approved as well. None of the doctors could understand why the existing appointment with Dr. Shields couldn ’t be approved. Jenelle has chronic, catastrophic Epilepsy and should be properly monitored by an Epileptologist . CHOC Neurology does not have an Epileptologist . She is already an established patient with Dr. Shields and has been for almost 3 years after initially being referred by CHOC Neurology. It just didn ’t’ make any sense.
Finally, I made one last plea to the director of St. Joseph. I was told point blank "Because Jenelle has not been seen at CHOC Neurology while being a member of St. Joseph; we cannot authorize Dr. Shields at UCLA until she is physically seen by a Neurologist within network (at CHOC)." Basically the Director told me to "Get an appointment, take her to CHOC, have them take her vitals, have them "confirm" she has Epilepsy, and then ask them to make a special referral request to be seen by Dr. Shields at UCLA." Seriously, confirm she has Epilepsy? What, am I making this stuff up?
So, my next call was to CHOC Neurology for an appointment – begging and pleading for them to see her ASAP so we could keep our existing appointment with Dr. Shields at the end of this month. We were two weeks away and getting desperate. On a side note, Jenelle’s seizures have been increasing of late I think due to her increased weight so we really need this appointment to discuss adjusting her medication. Frankly, Dr. Shields is the only person I trust to change her seizure medications.
So, enter a "new wrinkle" into the mix; because it had been over 2 years since Jenelle was last seen in their office, she was now considered a "new patient" at CHOC, and the earliest "new patient" appointment was 6 months out. Are you still with me? Is your head spinning yet?
Finally, I made a few more phone calls and finally spoke to the CHOC Neurology Office Manager. After hearing our story, she gave us an appointment last Wednesday per a last minute cancellation. So, I took time off work to take Jenelle out of school to take her to CHOC Neurology to be seen (physically). They took her vitals and put us in a room to meet with a Neurologist, Dr. Ishmail . After a long wait, the doctor entered the room with her file (3 inches thick mind you, and that only covered Jenelle through April 2004).
Dr. Ishmail sat down, looked me straight in the eye and said, "I’m very puzzled. May I ask why you want to switch your daughter’s care from Dr. Shields at UCLA to here?" To which I replied, "Oh no, with all due respect, we’re not switching doctors. We’re very happy with Dr. Shields and we have an appointment with him at the end of this month. I’m here simply to waste your valuable time and mine in order to keep my insurance happy." He simply shook his head and agreed to put in the referral to UCLA. A complete and utter waste of time.
Dr. Ishmail is a really nice man and is a general neurologist. He does not specialize in Epilepsy. We talked a little about Jenelle, her seizures, her medications and her amazing new progress. He confided in me that it was his opinion that we were already seeing the very best doctor in the World regarding Intractable Epilepsy like Jenelle’s. I told him I agreed. He handed me a prescription slip with a statement indicating that Jenelle was best treated at UCLA, and we left the office. I will be staying on top of this to make sure the referral gets approved. It must be approved by the end of next week - keeping our fingers crossed that telling you all this didn't jinx it.
In other insurance news, Jenelle was fitted for a new recreational stroller on Monday. She has grown out of the Graco Baby Stroller and this one will work well for our needs. That should take another month or so to arrive now that it has been ordered. And, Jenelle is getting a new safety helmet as her old one is too tight. We also got the "go ahead" to run the tests ordered by the Metabolic Specialist back in January. Jenelle needs to have a blood draw this weekend and submit a urine sample. Please wish us luck on that last part. Our wiggly, giggly girl is quite difficult to bag for a urine sample. Keep your fingers crossed for that as well!
And finally (as you can see below) I got the unofficial word that our insurance has denied our request for her sleep safe bed. Once I receive the official letter, I plan to write an appeal. I think the videos speak for themselves in regards to our safety concerns and needs.
If you’ ve made it this far; thank you! Our experience of late is just a sad statement on health care issues in America. Wasted time, needless appointments, begging and pleading while we jump through endless hoops and do tricks to get insurance companies to do what they are being paid to do and should rightfully be doing all along. The saddest part of our experience is that we wasted an appointment on Wednesday that could have gone to another child with more urgent needs. CHOC’s waiting list is already 6 months out - How much shorter do you think it would be really if we didn ’t have to waste time going through protocol just to satisfy the medical group’s insane and outdated practices? It’s a shame, and fortunately I know better to fight the system.
I’m not sure what can be done to change the ways of the insurance companies. But maybe getting our story out will help raise awareness that this system needs to be fixed.
Thank you for the continued positive thoughts and prayers. I’ll keep you posted after our trip to UCLA. (and don’t forget to think positive thoughts on getting that urine sample!) ;)