It was a cold and snowy January day much like any other.  The phone rang, and I walked over to pick it up.  I noticed on my caller ID it was the number from the children’s hospital we travel to, and so I picked it up.  I was expecting it to be a normal reminder call, since we were close to the date to go see urology for our daughter Maggie.  

Little did I know that this call was going to be much different than past phone calls.  It was one of the nurses from the urology department letting us know that our visit had been denied, and that they could suggest another doctor in our area.  I sat there almost speechless, fully expecting this to be an insurance issue.  Then I cried.  


Who is the Culprit?

We had gained much experience with our medical insurance company obtaining approval for various medical services for Maggie.  Fighting for things and getting denials were part of a process we were very familiar with.  The one thing I found odd about this particular situation was that our medical insurance had never denied us going out-of-state before.  They had denied us other things like single use catheters, diaper wipes, iodine swabs and so on.  You know, essential medical equipment?  But this was the first time I had experienced our insurance company denying us a hospital visit, or at least that was what I thought at the time.  

So my mission began to figure out what in the world was going on.   I didn’t know of any changes with our insurance.  I was never notified if there had been, and we usually get letters or flyers in the mail notifying us of changes.   Luckily, with a little help from some of our friends, we got the link to our insurance company and began scouring the website searching for the change that we knew nothing about.  We never did find any changes.

After our insurance search, we learned the denial had nothing to do with our insurance whatsoever.  It was time to call back urology and find out what exactly was going on.  Why was our visit denied, and why did they want me to stick with doctors at home?


Denied by the Hospital

My first call was to urology to talk to the head nurse.  Our conversation went something like this:
 
Me:  “Hello, this is Mrs. Reed again.  I looked up information on our insurance and learned that our insurance hasn’t denied our visit.”
 
Nurse:  “Oh no, it wasn’t your insurance that denied your visit.  It was the hospital administration.”

Me:  “What do you mean they’ve denied our visit?”  

Nurse:  “Basically, someone in administration decided they didn’t make enough money from your insurance since they only pay a flat rate.  They only make 7% on the dollar from your visit.  And since you’re insurance is not from our state you are not considered top priority.”

Me:   “What does it matter if I’m not from your state?  Our insurance pays for this.  And what if you only get 7% on the dollar from our insurance?  At least you get something from our insurance instead of nothing.  Your doctors travel all over the world to help people in third world countries and they have NO money to give, yet you’re going to complain about 7%?”
 
Nurse:  “I know.  I don’t agree with this at all either. But I can talk to Dr. A and see who he would recommend from your state that you can go see.”

Me:  “No, this is unacceptable; the doctors here in our state don’t have a clue.  I could travel across the state and get the same unacceptable care that I get here at home.”
 
My heart was sinking during this conversation and I felt that it was almost futile.  I asked to be transferred to the person in charge of all of this.   My call was directed to the urology administration, and once again our conversation was full of, “I’m sorry.”  I also got, “I don’t agree with this either.  This happens more often than we like it to.  But we could put this in front of a committee and see if we can’t get this approved.”


Fighting Back

Let me just share with you that I was not at all a happy camper.  I was pretty angry at this point.   The hospital we go to has been well known for caring for children with my daughter’s condition.  They were the best of the best that we could go to, and honestly, my daughter deserves to see people who have a clue about her rare condition.  They were known for the philosophy, “Once a patient always a patient.”  To have them say, “We won’t accept your insurance but you can set up payment arrangements,” made me so angry.  This was even truer because the care we had received near our home was completely and totally unacceptable, and a local doctor with no experience with my daughter’s condition had grievously harmed her in the past.

While most of my anger was focused toward the hospital, I also realized that hospitals cannot survive when insurance companies pay such low rates.  Many insurance companies, and especially state Medicaid programs and HMOs, pay extremely low rates that do not even cover the costs of services received.  Sometimes hospitals drop entire large insurance companies and all of their covered patients, because the reimbursement is so poor or the procedures to obtain payment are so ridiculous.

After the anger had subsided, I began to gather myself up by my bootstraps to fight back and make things happen.  I was not satisfied with being thrown aside as if we didn’t matter.  So I thought long and hard about what it was I could possibly do to help get us back into the hospital we so desperately needed to be at.  

It took me a while to figure out what to do.   If it had been insurance, we would have filed appeals, but this situation was totally different.  My logical conclusion was to go to the doctor we had seen the most there and let him know of the situation. To my surprise, he emailed me back quickly, stating he was completely unaware of this happening, and wondered how many of his patients he had lost due to denials from the hospital administration.  He advocated on our behalf to allow my daughter to be cared for again.

Thankfully, in the end, we were able to get back into the hospital to see urology.  It would have been awful if we didn’t make it back there since my daughter requires several surgeries that I would much prefer these doctors do.   Sadly enough, this doesn’t mean that we won’t encounter this once again.  If we do, though, I will be more prepared to fight for my daughter and will know what to do.  


What Can You Do?

Hopefully you won’t ever have to experience what we did trying to get care for your child.  Unfortunately, having a hospital administration deny your request for care due to your insurance is more common than most people know.  I can’t even tell you what type of insurance is best because this happens to all families with all types of insurance, though HMOs and out-of-state Medicaid plans are some of the most frequently dropped insurers.

What I can share with you is what to do if you are faced with a situation like this to make sure your child gets the care he or she deserves.  

Step One:  Determine Who is Denying the Visit
First, take a deep breath.  The first time you hear that your visit has been denied will most definitely set your blood boiling.  Be sure to find out whether this decision was an insurance decision or a hospital administration decision.  Gathering this information first will let you know which fight you're going to have to fight.   Just try to remember not to let anger get the best of you, especially if you know that your child will benefit from going to a specific hospital.

Step Two:  Contact your Doctor
Don’t assume your doctors know that you have been denied care.  Usually they don’t know.  I’ve seen many times when people think it has something to do with the doctor and think, “That doctor doesn’t care for my child.”  Chances are this isn’t so at all, and your doctor has no clue at all that this even happened to you.   Our pediatrician here at home informed me she is never notified of denials based on insurance coverage, and would have never known why her patient did not come back.

So get in contact with the doctor.  If you see several doctors and one has more pull at the hospital than another, then by all means contact that doctor.  In our case we didn’t contact our urologist but the colorectal doctor who is our usual specialist at the hospital.  What they can do is go in front of administration and advocate for your child.   I know the administrator we spoke to in urology said she would advocate for us, but don’t make the mistake of settling for that.  Lower level administrators do not have as much invested with your child or as much pull with hospital administration as a doctor does.   No one will fight as hard for your child than the doctor who cares for your child.  

If you follow these steps they can be very helpful in getting your child the care he or she needs.  Remember it’s okay to be upset.  Parents of children with special needs go through so much being their child’s caregiver and fighting with insurance companies that it can be very easy to let our emotions run with the wind when we hear another rejection.   But take a moment to turn and look at your child.  Know that he or she is always worth fighting the good fight, even if it’s a hospital administration that you have to fight.


Tracy Reed is a wife and mother to four beautiful little girls ages 13, 11, 7 and 4.  Her four-year-old was born with VACTERL Association and multiple allergies.  She has written two past articles for Complex Child:  VACTERL Association and Imperforate Anus, What!?

They are a fun loving family that loves to learn and live life to the fullest.   Even if they have to fight insurance and hospital administrations.  You can contact Tracy at sonlightuzer4ever@yahoo.com, or visit her at www.caringbridge.org/visit/margaretreed1