No one wants to ask for help. We all want to be able to do everything ourselves. For many of us with children who have complex needs, there comes a time when we have to ask for assistance. How does this work? How can we make sure that we get the best and the right type of help? What happens if we ask and are told ‘No’?
Knowing how to get home health started is tricky. Some of us are lucky and the hospital staff will recognize the need and get things set up before we ever get our child home. For many of us, this is not how it works.
Starting up was quick and easy.
We started with a weekly 12-hour day shift from 7 a.m. to 7 p.m. During this time, we scheduled all of Casey’s appointments so that the nurse could sit in the back and manage her airway while I drove. This was the day I could get a little sleep, clean the house, run errands, etc. We selected a nursing company that was listed under our insurance’s in-network selection in hopes of keeping things nice and easy.
At first we felt a little weird about having someone in our home helping with our daughter. That was our space and we were very private people. We felt like we had failed as parents by needing help. After a few shifts, the nurse could manage Casey’s needs pretty well and I was getting so much done. We found ourselves asking, “Why did we wait so long?”
After 6 months or so, the nurse had to cut her hours back from 12 to 8. We panicked! We had finally gotten used to having help and the thought of losing 4 hours was devastating. Instead, we opted to go from a single 12-hour day to 3, 8 hour days and added another nurse to cover the other 2 days. This seemed like a simple request, but our insurance started denying everything! They denied all nursing hours; they were denying therapies, medications. I had to spend hours a week on the phone fighting to get anything covered.
We managed to get Casey into a Medically Dependent Children’s Program (a Texas Medicaid waiver program). Once we had Casey on the waiver, we had a secondary insurance that would cover things like nursing when our primary insurance denied coverage.
Over the years we added more shifts, and eventually had over 130 hours a week between day and night shifts. There were a few things that we learned:
This is a really hard job; we need all the help we can get.
When your child is admitted to the Pediatric Intensive Care Unit (PICU), it is a stressful time. The environment and care level is just that, intensive. The rules are different and take some learning and adjustment.
Our son has a long list of diagnosed conditions and some only came about because of our pursuit to find answers.
We cross paths with many people day-to-day. Sometimes I can tell that someone may want to ask a question, or just say hello, but they don’t. Hopefully, these suggestions can help to break down some barriers and help others approach families of children with disabilities with more ease and understanding.