The embarrassing truth of our health insurance dilemma:
We have none.
Ok, so we had none.
January 30th, the day of Adyleade’s latest non-breathing, dusky, limp-as-a-cooked-noodle episode, we had NO health insurance.
*FAIR WARNING: This is going to be a lengthy and boring post, but nonetheless, it is an important part of our story.*
My husband is a very hard-working man. He is a realtor. He loves his job and he is great at it. He puts in so many hours at work. It’s fair to say, that more weeks than not, he works way more than 40 hours a week. Realtors, though they work for a real estate company, are considered “self employed.” This means realtors are not offered benefits, such as health insurance.
In 2014, we applied for government subsidies offered by obamacare. We made a whopping $60 per year too much to qualify for any subsidies. We needed health insurance desperately, especially for our girls. They needed their yearly follow-up appointments with neurologist, cardiologist, pulmonologist, allergist, ophthalmologist, gastroenterologist, and Shriner’s Children’s Hospital for Sophea’s orthopedic/bracing for her severe kyphosis, mild scoliosis, and moderate lordosis. Despite not qualifying for any subsidy, we purchased a health insurance plan. It was summer, and that is generally a decent season for real estate, so we were able to scrape and stretch our funds to afford it. Our cost? It costed our family $1450.00 per month. We had a $5000.00 deductible, and a $90 copay per doctor visit. During this time, I was able to have Adylaede’s surgery for tubes to be put in her ears.
But then, the market slowed as the season of summer came to an end. After a whole lot of praying, we decided to let go of our health insurance. We really didn’t have a choice. We simply couldn’t afford it. With the discount our Primary Care Physician offered for pay-out-of-pocket patients, our well-child check-ups and sick visits were $86. So not only were we saving $1,450 from the health insurance premiums, we were saving $4 an office visit too. Crazy, right?
If it wasn’t for the girl’s hypotonia, and their need to be followed closely by all the specialists previously listed, we probably wouldn’t have been so desperate to find health insurance. We were managing paying out of pocket for Malikhi’s ADHD appointments and medication, as well as Giddeon’s asthma with the free samples of Symbicort his PCP graciously gave us.
Other than the girl’s needs, I knew that Giddeon’s tonsils were gigantic (they are touching each other!), and often times he wakes up in the middle of the night crying because he can’t catch his breath and he feels like something is in his throat. I have to calm him down so he can calm his breathing. I have to assure him that it is only his tonsils in his throat. We have been able to manage this ok too, but I know a tonsillectomy is in his future, if only we can find health insurance.
I tried applying through disability. Surely, my girls would qualify. Right? But they do not. Why? Because we made too much money, and we had too many assets. Even though we were paying mortgage on our home and car payments for both vehicles, these were considered assets. It is infuriating that disabled children, cannot get disability insurance because their parents work.
CHIP? We tried that too. We were in the full price CHIP category. We would have to pay approximately $250 per kid; $1000 per month. We put this option on the back burner, but knew that it would be too tight financially to swing it for the long run.
In our desperate situation, we applied for medical assistance around the winter of 2015, and hoped that at least some of our children would qualify for the disability loophole. I anxiously awaited the mail. A little over a week after we applied, I received a notice from the assistance office. They had requested more information. They had given us 3 days to have a form filled out by a doctor for each of our children and they asked for income verification. The doctor’s office had a sign that stated to expect up to 10 days to have forms filled out. The office didn’t take that long, but still we received the forms a few days after they were due. I mailed them along with our income into the office. I waited. A couple of months went by. Finally, I called to talk to someone. No one could find record of us. A couple days later, Mike called. We learned that we were denied because we made too much money. I wrote to them again and reminded them that we were applying to be considered for the disability loophole, which does not depend on income. I included a printed copy of the disability loophole rules. Not because they weren’t aware of the rules, but so they knew I was aware of them! We waited again. A few weeks later, more mail. They asked for income verification (again!) and for more health records for the kids, they also requested to see copies of any I.E.P. plans my children had. I sent them. And so went the pattern for the next few months. After over a year of back and forth mail and phone calls, I was frustrated! I felt like we were getting nowhere. Unfortunately, I was correct.
At this point, it had been over 2 years, and we still had no health insurance.
Then came January 30th, 2017.
Adylaede’s latest episode.
After we heard from the ER that it was most likely classified as a seizure by many doctors, I knew that I could not put off the specialist appointments any longer. She needed to see a neurologist. And I knew the neurologist would need to order many expensive tests.
I gave it one last effort to get health insurance through medical assistance and the disability loophole. I had a plan, hatched out of desperation. I gathered EVERYTHING I anticipated the assistance office could ever ask for. I had all my children’s life-long health records printed. I had up-to-date income verification. I had I.E.P’s and 504 plans. I had physical therapy reports for both my girls, and more. I 3-hole punched each page and assembled it in a 4in binder. I used tab dividers to section off each child and any additional information. This binder was bursting at the seams. After I gathered everything, I filled out another online application and started from scratch. I waited until I received the first letter from the assistance office with their requests for additional forms. I put together a cover letter, included our case number, and asked that my binder be signed by the person that received it. My cover letter, which I slid inside the clear plastic cover of the large binder, also stated that they were responsible for making copies of what they needed and returning them to the binder. We hand delivered this binder. We informed them that we would pick up the binder and all included paperwork a week from the day they received it. I knew there was nothing more they could request. My only fear was that my binder would be “misplaced.”
A few days passed.
It was the day of Adylaede’s neurology appointment. I explained my insurance woes to the doctor. She disclosed that it happens all too often. She also shared my frustration that children get denied disability insurance because their parents make too much.
Adylaede’s neurologist revealed the tests she would like to see in her very near future. I hesitantly expressed that I would be making the call to follow up with insurance by the end of the week. We left the appointment.
Just when I reached my driveway, my phone rang. I answered. It was our caseworker at the medical assistance office. She explained that at first glance, she was a bit overwhelmed by my binder, but overall, she was impressed by my organization. It was easy for her to find what she needed. She appreciated my efforts. She had called to let me know they were finished with the binder, and that we could pick it up from their office during business hours.
She was about to hang up. I stopped her. I needed to inquire about our application status. She revealed that our case was open and pending. ALL FOUR KIDS WERE APPROVED under the disability loophole!! I cried tears of joy! Thank you, Jesus.