Age 6, Maryland

Meet Timmy. Timmy is a newly minted kindergarten graduate who loves robots and pirates, plays on a local soccer team, and dreams of growing up to become a police officer, firefighter, “ambulance man,” garbage collector, or robot repairman. He is exuberant, hilarious, creative, and one of the most resilient children you will ever meet.

Timmy has Opitz G/BBB syndrome, a genetic syndrome that is associated with airway abnormalities and several other medical conditions.

Timmy breathes through a trach and has a feeding tube. He relies on several pieces of specialized medical equipment, including a ventilator (at night), a pulse oximeter, a nebulizer, a machine that provides intrapulmonary percussive ventilation, and an oxygen concentrator (when he’s sick). 

We have excellent employer-sponsored health insurance that allows Timmy to thrive at home. That insurance keeps him healthy and provides for the medical supplies and equipment that he relies on; it also allows us to access out-of-state specialists, which is necessary because Timmy’s condition is rather rare. Quality healthcare and excellent insurance means that Timmy lives a fairly normal kindergartener life; it also drastically reduces the cost of his medical care because we are able to avoid lengthy in-patient hospital stays.

Timmy spent his first six months in the hospital. He was born just six days after the initial provisions of the Affordable Care Act kicked in. Among those was a ban on lifetime maximums. Our insurance policy at the time included a lifetime limit of $1,000,000, which Timmy would have reached by the time he was three months old. Because of the ACA, we didn’t lose our insurance. Timmy was born in Ohio and was approved for the Medicaid waiver when we finally brought him home; however soon thereafter we moved to Maryland and have been on the Medicaid waiver waiting list for nearly six years. We are managing because my employer-sponsored insurance is very good. However, because our insurance does not cover daytime nursing (kids usually access this service through Medicaid), we cannot both work outside the home. If Medicaid cannot even manage current needs, what will happen to children like ours when the proposed drastic cuts are implemented?

Timmy is thriving primarily because we have great insurance. Even with the ACA, our employment options are extremely limited because of Timmy’s insurance needs. Under the proposed healthcare bill, a loss of employment, a change in jobs, or even a decision on the part of our insurance company to reduce covered benefits would be devastating, both for Timmy’s health and for our family’s finances. Essential health benefits are just that–essential. What would we do with an insurance plan that didn’t cover hospitalizations, durable medical equipment, or outpatient care?

Submitted by Mark and Michelle, Timmy's parents