Caught by a Change in Health Care

The pink walls, the row of stuffed animals along a shelf and the big Winnie the Pooh doll make Shelby Rogers's room look like it could belong to any 11-year-old girl.

But wait, what are those machines in the corner, next to her bed?

The one with the long tube and a device for her nose is a breathing machine. That black-and-white box with the digital readout monitors pulse rate and oxygen level. Next to it is the device that helps Shelby cough.

She needs these machines and others because she has spinal muscular atrophy type 2, a disease that weakens muscles throughout her body. She also needs nursing care 12 hours a day.

Without the nurses, her parents, Philomena (aka Phil) and John Rogers, who is the chief information officer at the Commodity Futures Trading Commission, would be in a very tough spot. The outside assistance, covered by their federal Aetna health insurance policy, means better care for Shelby and a more normal life for her parents and three sisters.

But that assistance will not last long. Private duty nursing care will not be covered after Jan. 1, although Aetna is allowing a transition period to March 31. "Please be advised that these changes have been approved by the U.S. Office of Personnel Management," reads a letter from Christopher L. Weinrich, Aetna's director of federal operations.

Shelby, a smart and engaging sixth-grader, who once talked of being a fashion model, is confined to a wheelchair. The disease leaves her unable to do alone many of the things the rest of us can do in our sleep.

That gadget on the ceiling is an electric lift. Hanging along the wall is a body sling. Together, the devices haul her in and out of bed so her parents or the nurses no longer have to strain to do so.

The nurses, four in the course of a week, care for Shelby in her Arlington home from 7 p.m. to 7 a.m. every day. Among other duties, they bathe her, exercise her feet and legs, and assist her on the toilet. While she sleeps, they turn her every two hours to prevent bed sores. They handle the machines that do for Shelby what her body cannot.

The nurses help keep her alive.

"They help me get to sleep, they roll me over and wake me up and put clothes on me and put me in the wheelchair," said a shy, smiling and pretty Shelby, an honors student at St. John Academy in McLean.

The Rogerses have used open season to look, without success, for other insurance companies that will cover private duty nurses.