My First Letter in Support of Special Needs Families (written to my local state of NC representative)
I would like to talk seriously to you about health insurance limitations for special needs families in our great state. The fact that families can not purchase insurance as good as Medicaid is so odd to me. Instead we must beg and navigate a system to get free coverage when we want to pay for it and can. Instead, we are left with expensive insurance that does not nearly meet Amos' needs. This year our family will spend $23,500 which does not include travel expenses. Interestingly enough, federal employee insurance benefits almost mirror Medicaid benefits for children. I would like to bring this to the attention of our state government who I'm sure were once like me, in a state of comfortable cluelessness.
Also, why am I guaranteed coverage for a sex change that costs about $132,000 and I can not opt out of it? Why would this be a given instead of therapy to help my Amos say "Dada"? Regardless of Amos and his situation, I can not sit quietly anymore. I just know too much now about the families that reach out and thinking of them keeps me up at night, plotting change. Please feel free to read some of my blog posts on my Facebook page, Tales of an Educated Debutante.
There are thousands of children in NC families like ours, with well educated and working parents that are paying for insurance that doesn't meet the needs of our children. These children are far behind their peers but fall in the land of developmental delay and unknown diagnoses and futures. Their voice should be heard and their parents are too tired and stressed and busy counting visits to reach out themselves. I would appreciate any direction in this critical matter.
Adrian H. Wood, PhD