James, age 6 (California)

Meet James.  He loves Pokémon and transformers.  He recently went on his first non-hospital trip — to Hawaii, courtesy of Make-A-Wish Foundation.

James is tracheostomy and g-tube dependent with overnight ventilator use due to a rare form of dwarfism.  James will be tracheostomy and night time ventilator dependent as long as he lives. James needs access to a Medicaid waiver in order to have home nursing, since he requires 24/7 hospital level care.

James lived in a pediatric sub-acute hospital (a state-funded institution) for eight full months, because we were unable to find sufficient home care nursing for him to be discharged from the hospital to our rural home town. We eventually had to move to a bigger city to get him sufficient home nursing.

My husband is a teacher and I’m a retired, injured police officer. We have health insurance through my husband’s employer. Our policy had a million dollar cap prior to the ACA. James is a lifetime limit baby – he hit the million dollar mark that would have been his lifetime limit when he was still an infant, before he ever came home from the hospital. We are terrified of lifetime limits coming back, because our son would instantly lose access to the employer sponsored health insurance (that we pay for) that he has now. We would be stuck paying insurance premiums for our family to a for profit insurance company, but they would get to displace all the cost of providing medical care for our disabled son to the taxpayers.

Submitted by James’ mother, Jenny