Unable to walk or talk, barely able to see or hear, 5-year-old Maddie Holt of Everett, Wash., waits in her wheelchair for a ride to the hospital.
The 27-pound girl is dressed in polka-dot pants and a flowered shirt for the trip, plus a red headband with a sparkly bow, two wispy blond ponytails poking out on top of her head.
Her parents can't drive her. They both have disabling vision problems; and, besides, they can't afford a car. When Maddie was born in 2012 with the rare and usually fatal genetic condition called Zellweger syndrome, Meagan and Brandon Holt, then in their early 20s, were plunged into a world of overwhelming need — and profound poverty.
"We lost everything when Maddie got sick," says Meagan Holt, now 27.
Multiple times each month, Maddie sees a team of specialists at Seattle Children's Hospital who treat her for the condition that has left her nearly blind and deaf, with frequent seizures and life-threatening liver problems.
The only way Maddie can make the trip, which is more than an hour each way, is through a service provided by Medicaid, the nation's health insurance program started more than 50 years ago as a safety net for the poor.
Designed for Medicaid's most fragile
Called non-emergency medical transportation, or NEMT, the benefit is as old as Medicaid itself. It requires the transport of certain people to and from medical services like mental health counseling sessions, substance abuse treatment, dialysis, physical therapy, adult day care and, in Maddie's case, visits to specialists.
However, citing runaway costs and a focus on patients taking responsibility for their health, Republicans have vowed to roll back the benefits, cut federal funding and give states more power to eliminate services they consider unaffordable.
More than 1 in 5 Americans — about 74 million people — now rely on Medicaid to pay for their health care. That includes nearly 104 million NEMT trips each year at a cost of nearly $3 billion, according to a 2013 estimate, the most recent.
Proponents of limiting NEMT say the strategy will cut escalating costs and more closely mirror private insurance benefits, which typically don't include transportation.