Our son's name is K. We noticed that he wasn't meeting the developmental milestones when he was 5-months-old, and sought the help of a pediatric neurologist. This was the beginning of a long road of testing, biopsies, hospitalizations, tube feedings, endless therapies, hundreds of hours on the phone with insurance companies, and much much more over three different states. Eight and half years later, our amazing son has had no "valid" diagnosis that is billable from insurance companies other than failure to thrive. K needs total care: feeding, dressings, walking, he is non-verbal, and has gross and fine motor delays. For much of his life, there have been large gaps between what he needs and what is available in therapy and availability. The most difficult time was our move to Missouri where our previous insurance company covered 100% of his occupational therapy. Our new insurance company covered 20 visits and after those were used we had to pay 100% of the cost out of pocket. Each of the 20 visits also required a $25 copay. Our son had dramatic improvements in feeding skills and a reduction of the oral sensory problems that prevented him from eating a nutritional diet. We have since left that insurance company due to employment changes, but we are still paying those bills off. Insurance companies should not have the option to cover these necessary therapies that help children like my son learn basic skills, like eating!
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