It seems to be a ritual after work that I drive home down the winding country back roads to avoid traffic and to take a few quiet deep breaths. I pull into my driveway and immediately check the mail. Yesterday when I checked the mail I noticed a letter from our health insurance carrier and it was addressed to Jude......oh dear. We made jokes when we enrolled into Mike's group health that it wouldn't take long for Jude to exhaust his maximum benefits with them. I know it's not a joking matter, but you have to have humor people! He had not exhausted his benefits, but they were denying his nursing based on failure to meet medical necessity. WHAT? (picture me looking at you with a blank face)
I didn't panic when I opened the letter because Jude's health insurance is backed up by Medicaid through the medically dependent children's program. I had to appeal Jude's nursing before through MDCP and we won the case. However, since that time Jude's medical issues have grown very extensive. My feathers were ruffled when I opened the letter, but I wasn't surprised. It seems to be the growing trend since the reform that people are encountering these issues. Both of Jude's doctors I contacted about the situation relayed frustration due to the recent outpouring of cancellation of services. I could simply throw my arms up and let Medicaid take care of the nursing, but I don't believe that is right. We pay into our health insurance to avoid being dependent on the state. We also both work full time so we can pay for the items we need to live, provide a home, entertainment, etc versus again living off other means.
I actually understand this process. The health insurance company employees nurses and doctors to review their cases to look for medical necessity and if there isn't any to deny. Fragile children can be very expensive to take care of and a drain on a company. So in Jude's situation they either didn't obtain the information they needed (doubtful) or they just denied. I remind myself that their doctors don't know Jude, so to them Jude is just a number. So without knowing his case and having his full diagnosis they make a rash decision. What I don't understand is how Jude's case changed from last year vs this year to cause the denial? If anything Jude's medical situation deteriorated with the double pneumonia and empyema not to mention the other hospitalizations. When talking about official diagnosis Jude's form is very long. He had a massive bilateral stroke which caused bilateral closed lip schizencephaly. He is cortically visually impaired, GERD, incontinent, severe hypotonia, nonambulatory, cerebral palsy, g button fed, chronic lung disease, seizure disorder etc. In other words Jude is severely disabled. He needs to be monitored 24/7 for possible aspiration, seizures, and breathing problems. So medical necessity shouldn't be a question. Without constant monitoring Jude would be hospitalized.
This will probably be a fairly simple process. I contacted the health insurance company, two doctors, and a nurse. They will do a peer to peer consultation. If that doesn't solve the issue I will be surprised and then we will go to appeals. However, there are people in our situation who are not advocates like I am. One family was recently denied continuation on the waiver program and rather than fight it they have decided to place their child in a nursing home. This won't ever happen with Jude as long as I am alive.
To follow up on the bathroom remodel I submitted the three bids to get the remodel completed through the waiver program. They provide a portion of the funds and we supply the rest. Two of the bids were from vendors on the list the waiver program provided us and their bids were VERY expensive. The other bid was from a licensed general contractor that is ADA compliant. He had the best rate, but the waiver program wouldn't approve his bid since he isn't an approved vendor through their program. I can understand this, but I also think it just gives the approved vendors the right to charge an exorbitant fee. So we can work on getting him "approved" but this could be a lengthy process or we go through their vendors. I did print out his bids and I gave them to one of the "approved" vendors and ask them to match it since it's the SAME work. We will see what happens.
I am so grateful for insurance and programs in place to help Jude, but sometimes I just get worn out from it all! We don't take advantage of the system. We just want the best care for Jude so it can be frustrating at times.
He is worth it.