Caught by a Change in Health Care

By Joe Davidson
Thursday, November 27, 2008

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.

The fact that other companies do not provide the coverage is one reason Aetna decided to dump that benefit, too. "If no one else is offering that benefit, then what you end up getting is adverse selection," Weinrich said during an interview. That occurs when people with a particular health need are drawn to the one company that covers it, which results in that company paying out more than its competitors.

It also means that our nation's health-care system, even for those with coverage, is fraught with holes big enough to push a wheelchair through. Much attention has focused on the 45 million people without health insurance and rightly so. But in the process, the many shortcomings of our market-based insurance system slip by. Too often overlooked are the untenable choices, such as Phil and John now face.

"They are expecting me to be on duty 24/7," Phil said. "I don't know how I can function. No person can physically do this seven days a week. It's impossible."

Caring for Shelby takes a toll. Carrying her, particularly before they got the bed lift, led to repeated problems with Phil's legs and back surgery for John.

But as John says, "it's a labor of love."

Shelby's nursing care costs $45 to $50 an hour, said Kathy Mitchell, nursing director at Continuum Pediatric Nursing in McLean. Shelby has Medicaid, but Virginia's reimbursement rate is so low that nursing agencies would have to close their doors if they relied on it, Mitchell added. Aetna's rate for its skilled nursing benefit also is too low to cover the cost of private duty nursing, Mitchell said.

Shelby's case "is an example of how ill our health care system is," said Robert Zarr, a pediatrician and co-chairman of the Physicians for a National Health Program D.C. chapter. "There is simply no private health insurance in this country that can guarantee you lifetime comprehensive health insurance coverage."

The relatively good health-care benefits for federal employees "was a major reason" John said he joined the government. Now Phil might need to find a job so they can afford private duty nursing. She's certainly willing to do so, but she's worried it would reduce the attention she gives to Shelby and her other children, particularly Mary Anne, 13, and Natalie, 10, who were adopted from Russia two years ago and are still getting used to American family life. Increased responsibility may fall on Sydney, 17, but like any high school junior, she has a lot going on.

"It's going to be a big burden on the family," Phil said.

The nurses who care for Shelby have become part of her family. Saaida Khaliqi has worked with Shelby for six years and now does it more for the pleasure of being with her than the paycheck.

Shelby is "very kind and considerate and she's very tolerant," Khaliqi says. "And she's very funny. Just like a normal kid, she's goofy, she likes to laugh, she's easygoing."

It's certainly more than a job for Khaliqi, who also works as a language arts teacher. She plans to continue visiting Shelby even if the family can no longer afford the nursing services.

"She's like my little sister," Khaliqi said, taking a moment to help Shelby eat. "I feel like coming here is a treat."

Contact Joe Davidson at federaldiary@washpost.com.