Before you read, keep an open mind and understand the battle and know that this is not a complaint but an opportunity for something to change.
I have a great job as an IT Programmer/Web Reporter for a large corporation and we have insurance which I always assumed would cover everything. I have noticed the past few years that there are certain things that are not covered or less is being covered and I am having to pay more up front. I never really had to battle and beg for help on getting insurance to cover something until recently. If anyone who reads this has any ideas I am open to hearing them for sure!
My baby girl was one of several babies out there that suffered Chronic Ear Infections for months and months. Finally when she was 9 months old she was referred to an ENT Dr that put tubes in immediately, but that turned into more problems. She developed Staph from that surgery and became really sick on and off. They swore it wasn’t the tube that was infected and she got it elsewhere and would not refer us to Children’s and wanted to take care of it there through medicines. The medicines worked while she took them but once she went off of the antibiotic it came back. I knew something was wrong but I tried to trust the Doctor until I finally had enough. She had never ran a high fever before and her daycare called saying she had 104 fever! I immediately left work and called her pediatrician because I was afraid this could go septic. They got me in and said she looked fine and the ears were still infected and cultured it again. We started another antibiotic and given the max dose of Tylenol and sent home to watch it. My Gut just told me something was wrong and my mom was feeling the same way. The next day was Saturday and we headed straight to Childrens Hospital ER to see what options we had to get the staph infection cleared up and see their ENT specialist to try and get this baby girl some relief! It was the best thing I did! They cultured it and got us to see the ENT Dr that Monday. The culture came back as Staph and she needed those tubes out immediately! The day comes for surgery and as discussed the tubes will be replaced and the ear canal cleaned out and if the infection was bad enough and the adenoids were large then he said it would be in the best interest to take them out. I was devastated that my baby had to go through this but it had to be done.
After the surgery was done he came out and said she did great and that the infection came from the tubes, mostly her left, and her adenoids had to be removed. Sophie was in pain but came out of it well and I was so grateful. At the time you don’t think about money or insurance, only your child because that is the only thing that is important. Sophie did great with no problems for months and then we went to the follow-up appt where they did a full hearing evaluation. Everything from sights and sounds to using the machine to test the eardrum and vibrations. I noticed that there was never a response to her left side without a visual or the clown popping up in bright lights on her left side, so I was prepared for them to say something I just did not know what. They said they tested it 3 times and there was no activity on her left side. I just looked around for a bit and asked what exactly that meant. Could tell they were choosing their words wisely. She said after serious infections hearing loss is a possibility but we never know if it is permanent until they are around 3 years of age.
I was like wait, wait, wait, so what do I do? Can I help her? What does this mean? They said that they would do another hearing test in 9 months to determine more. I could not believe what I was hearing.. 9 months!? My child is learning to talk and pronounce words and you want me to let her development be hindered by this? I don’t understand. She said, there are options if you want to be pro-active but it might be tough. I was like tough? She said, well do you have Medicaid? I said no we have insurance through my work, isn’t that better? She told me to hang on and she would be right back. She came back with a stack of papers to give to my pediatrician and for me to fill out for them and to give to my insurance. She was very nice and told me she would want to do the same as me and get help but to know that it could get pricey if my insurance did not cover it but said the developmental center would do a full evaluation and she has seen hearing return to children when caught before the age of 2.
I left thinking I just had to set up another appointment somewhere else and then as I was driving home it hit me. Did they just tell me that my child was deaf? No activity in her left ear? I just could not understand and I also just did not want to and My mom was making excuses that maybe it was from the surgery or it was a fluke. But this is hearing! We hear things everyday no matter what. Even with an infection there is activity happening in your ear! I tried to just relax and get through the holidays and research what needed to be done while I sent the stuff to my pediatrician to work on and get her referred for testing. It is now February and this was back in November, so it has taken some time for sure.
I finally got information in the mail from the developmental center and they were needing more information faxed in about insurance etc since it is the new year so I faxed everything in last week. I call to follow up to see what is going on and they said they needed me to sign a payment agreement to make sure I would pay so much at the time of the scheduled appointment and atleast half of the full bill the day of the appointment. I asked why it was being done like this because I have insurance and then the ball dropped! No where in my policy does it cover specialized therapies associated with hearing loss other than the audiology testing. It covered prescriptions and Psych evaluations per this was considered therapy and under the mental health policy. So I had to clearly understand and hear it for myself that I have no coverage to help my daughter regain her hearing through any therapy. Medicaid covers at 100% and any other government provided insurance listed under Medicaid is covered as well. I just did not understand and told them that I couldn’t believe it but I would do whatever it took and would pay. So I asked what the charges would be and she said she would fax me the information for the full day of evaluation per my pediatrician referred us for that because you want to make sure nothing is neurological and to make sure that everything is considered so they know how to help.
Anyways, she said 500.00 was due today to be put on the schedule and that since I had private insurance it was looking about 8-10months out! I could not believe this! Can I not get my child help any other way? 500.00! I have insurance that I pay for and it is useless in this matter so I have to be treated as if I don’t have insurance. I told her I was going to call her back because I wanted to call my insurance and get a full breakdown from them because something can’t be right.
I call my insurance and it was true. There was nothing covered under Developmental therapies or evaluations. Only Psych disorders and evaluations through certain doctors within the state. I asked what I was supposed to do and they said to ask for a payment plan and financial assistance. I got off the phone and wrote some things down.
Referred by ENT Specialist, Audiologist, and Pediatrician
Medical Records prove the need for therapy
My daughter has not had any infection since the surgery but still has hearing loss
She is showing signs of withdraw in certain places with muffled noises
Im noticing speech difficulty
She turns her head so she can hear people talk on her right side
Some days she acts as if she can’t hear hardly at all
After writing everything down I had to realize that my daughter needed help with or without insurance and I had to figure out how. How could something that is medically necessary not be covered by all insurances? Then the Fax of the cost breakdown came through. I was worried it was going to be close to 1200.00 like her surgery that I had to pay for up front because it was the same surgery within the same year and they would not cover but only a percentage of it. It was more than I could have even imagined!! Everything from MRI to several different types of hearing tests and behavioral testing to play therapy and occupational therapy and IQ-type testing and Speech testing came to a grand total of 8136.00. I know what you are thinking.. Isn’t this a lot of medical testing!? Yes it is but different medical codes due to it being at a developmental center and not a hospital it is considered under the mental health policy. Keep in mind this is part of the Children’s Hospital but it is their learning and development center. No matter what I said or did there was no changing to get insurance to pay. And this was just the beginning not the continued therapy once they find out what she needs. I was just sick! I work so hard and I need this so bad for her! I could never forgive myself if I didn’t try.
I decided to call other centers in the state to see if I could get anything cheaper and to my surprise I got rejected many times just for my child being under 3! And some will not help until your child is atleast 5!! I found one place that would take her but it would be for play therapy just to see how she is coping with having a hearing loss in one ear. I took it and its going to cost but it is only 300.00 and we have an appointment in a few weeks.
I took a few days to think about the other place because I know it is a specialized therapy and I know she needs it and I just had to figure out how I could pay for it.
We live in an apartment and I have been saving to build a house and just started the paperwork per I am finally approved! Nothing big, just 3 bedrooms 2 bath and I needed to make sure I could cover the cost of the interest and the little things here and there in case something went over budget and to have money to close on. I called the place today and paid the 500.00 and signed the papers that said I would pay 50% on the day of the appt. To my surprise they said they had an opening then end of March and I took it! I was thrilled that we got in and to know that my daughter now has a chance to get better and that she will get therapy is wonderful! I used the money however that was for our house. I know we need a better place to live but I am thankful that I did have this saved up or else I don’t know what I would have done. I will use my refund to help with the therapy costs after the evaluation and requested to be put on the payment plan and regardless I will take out a loan if I need to.
I don’t understand why it has to be this way and why I can’t get help when someone else can get the therapy for free but all I know is that sometimes you can’t fight the battle and I could have given up which is what most probably have done and will do but I didn’t. I am hoping for a miracle and for my daughter to regain her hearing and be able to cope with whatever outcome happens. As a mom, I will do whatever it takes for her.
Has anyone out there had to fight the healthcare battle and are there any options? Please share your story if you have!