Don’t make me choose between the image of my two year old son running and jumping or eating with a fork. Maybe I am greedy but I want it all.

Amos. Our two year old son with an extensive medical history, several surgeries and a history of developmental delay, had been in outpatient therapy since he was just ten months old. He was not deemed medically fragile and making progress, so he was not deemed eligible for Medicaid. Our now special needs family had chosen the best available health insurance plan, Blue Cross Blue Shield Platinum 500 and still, the available benefits were drastically lacking for our youngest son.

We are just one in the many millions, a sliver of the 6% of families in the United States who purchased their own health insurance in 2014. Regardless of the policy chosen, benefits are exactly the same for all privately purchased plans as well as those offered under the Affordable Care Act. Prices are based only on deductibles and out of pocket costs. Our $2650 per month fee was not the golden ticket we had hoped and so, the difficult choices after a couple months.

Our penthouse insurance plan did not offer nearly enough therapy visits to effectively bridge the gap in Amos’ development. Per our health insurance policy, each family member was allowed thirty speech therapy visits per year as well as thirty combined physical and occupational therapy visits. Our developmental pediatrician recommended three to four visits per week in the areas of speech therapy, occupational therapy and physical therapy. The math is not particularly complicated and if we followed the recommended number of visits per week, Amos would receive speech for eight to ten weeks. Just five weeks of physical and occupational therapy because only thirty visits total were allowed for those two therapies combined.

Our struggle was real and despite early intervention services available in every state, under federal law, we still could not get what we needed. Those visits offered through the state were also included in the limit unless we requested our insurance company to not be billed. We did this and have paid out of pocket $60 per therapy session provided through the state of NC program. The state only offered twice per week though so we also lowered visit numbers to ensure we would receive therapy over a longer period. The private therapy offered at our small town hospital was quite good but at a cost of $350 per hour, we had no hope of paying for it in addition to our hefty insurance premiums.

There is a phenomenon known as the “Medicaid gap.” It applies to the families with incomes that were too high for Medicaid eligibility and too low to receive subsidies on the new health care exchanges (Kaiser 2015). Our family was not classified this way and yet, we are struggling too. We make too much money for Medicaid yet don’t qualify based on our son not being medically fragile. We are left to make painful choices and the repercussions are evident. Last year we incurred only physical therapy sessions and Amos finally walked a month before his second birthday. This year we have been focusing on occupational therapy as his fine motor skills are far behind and we long for him to use a utensil properly or point like other toddlers.

My disappointment lies in the endless hours of math and calculations, whether to determine the least expensive insurance policy or the number of visits used, depending on how they may have been classified and when or where they were received. This may sound like a foreign language to you but not to the mother with a child who has special needs that fall in a the gray area. My time is valuable and there is nothing less valuable to me than spending hours on hold, waiting, faxing, emailing, more calling, asking, seeking, harassing, and pleading with my insurance company just to get Amos the services that our experts specify he needs. It is never enough and not enough that he officially needs them.

He is falling in the cracks despite our best efforts. His father makes too much money and his lack of “diagnosis” under age three prohibits Medicaid and the plethora of unlimited therapy visits he would receive. I just want to help him talk. Is that too much to ask? I’m tired of doing the math. I’m tired of playing doctor as I choose and angst over which service is most beneficial for him, physical or occupational therapy. How do I choose? Don’t make me choose between the image of my two year old son running and jumping or eating with a fork. Maybe I am greedy but I want it all.