Samantha Lorey, 27, would be a mere 4-foot-5 if she could stand. She weighs just 70 pounds. She can move her hands a little to maneuver her costly new wheelchair, but if her arms fall in her lap, she can't pick them up. She can't move her legs at all.
Lorey's problems stem from spinal muscular atrophy, a neuromuscular disease that eventually will kill her. Diagnosed as an infant, she was not expected to live past 2.
Instead, she has lived long enough to need three wheelchairs - which she suspects may not please her insurance company.
"People who would be dead are living longer, so insurance companies are having to put out more money," she said in a soft, watery voice.
It took months, and three appeals of her insurer's denials, to get the wheelchair she now uses in her family's small home in Gibbsboro, Camden County.
People who evaluate and fit patients for wheelchairs say cases like hers have become more common in recent months. They say many requests for the kind of chairs that patients like Lorey use - expensive, motorized units with multiple custom features - are being denied because insurers and Medicare officials are worried about high costs and fraud. Doctors, physical therapists, and patients must appeal the decision, or else the patients give up and accept lesser chairs.
"It's gotten to the point where words are not enough to convince the medical directors" of insurers, said assistive technology professional Robert Townsend of Jeff Quip, a Boothwyn company that supplies complex chairs.
Experts said patients who fight - especially those who appeal in person - often can get the chair they need, but during the bureaucratic battle, they must make do with loaner chairs or lie in bed.
Brendan Warner, a technology professional for Nexus Medical in Willow Grove, said he called an amyotrophic lateral sclerosis (ALS) patient last fall to tell her that her insurer had finally approved her new chair after six to eight months of fighting. The patient's son told Warner that his mother had died, he said.
People who have battled for chairs say both public programs such as Medicare and private insurers are balking. The delays likely flow from Medicare's attempts to curtail fraud in the motorized wheelchair market; other insurers follow its lead. Medicare's response to companies that advertised widely on TV and amped up demand for scooters is a set of rules that Donald Clayback, executive director of the industry group the National Coalition for Assistive Technology and Rehab Technology, calls "onerous" and "overly aggressive."
Complex wheelchairs can cost $17,000 and up, sometimes way up. They last from five to seven years.
Payments by Medicare, the government insurance program for people 65 or older as well as younger people with certain disabilities, have been relatively stable for manual wheelchairs for over a decade. The government spent $184 million in 1995 and $283 million in 2010.
The chart for motorized chairs looks quite different. Spending rose from $59 million in 1995 to $1.2 billion in 2003, when the fraud crackdown started. Since then expenses have fallen steadily, to about $728 million in 2010. The government program spends an additional $200,000 to $300,000 a year on wheelchair accessories. Medicare estimates that about 5 percent of its beneficiaries use wheelchairs.
Insurers deny that they are stalling or have increased denials for high-end chairs recently, but say they must help prevent fraud and spend money wisely.
"It is often a challenge," said Don Liss, medical director for Independence Blue Cross. He said IBC processes 22.2 million claims a year and had denied 38 claims for complex wheelchairs last year. He called the "flat-out" denial rate "fleetingly small."
A Medicare official said the government program needed to curb "very significant overutilization."
Jill Roman, a spokeswoman for AmeriHealth New Jersey, Lorey's insurer, would not talk about her case, but said the company must make sure that members get quality care that is medically necessary and covered under their plans. She said it can be "very challenging" to determine which of the "vast number" of wheelchair accessories are medically necessary. "Each case is unique and can sometimes require a more extensive in-depth review," she said.
Medicare, which requires patients to have a face-to-face visit with a doctor before submitting a wheelchair claim, will pay only for chairs that patients need to function in their home, and private insurers have followed suit. They won't pay for more powerful chairs, for example, if someone needs one to go to work or get around a college campus.
Liss said insurance typically does not cover accessories that are not primarily medical in nature, such as interfaces for turning lights on or tray tables. Patients can pay out of pocket for accessories that aren't covered.
People who fit patients for chairs at area rehabilitation hospitals say they have a particularly hard time getting approvals for seats that go up and down so that patients can access work surfaces of different heights. Seats that tilt to prevent pressure ulcers can also be hard to get.
Estimates of denial rates varied widely, but people involved in sending claims said they were up markedly in the last two years.
"I've been doing this for 20 years and I've never, ever had to write so many appeal letters," said Dina Mastrogiovanni, an occupational therapist in Magee Rehabilitation Hospital's wheelchair clinic. "It's the worst I've ever seen it." In some weeks, she said, she spends from 30 percent to 40 percent of her time on appeals.
Susan Christie, a physical therapist who supervises the assistive technology center at Bryn Mawr Rehabilitation Hospital, said she had similar experiences. "I just feel that they've gone too far," she said. "It's made it so difficult for people who are truly deserving of this type of equipment to actually get it."
She said she has had patients who were stuck in one room while waiting for a new chair. Some went out in equipment they couldn't count on. "There's no AAA for wheelchairs," she said.
Christie said she does not submit a request unless she's "absolutely sure" a patient qualifies: "We think the denial rate should be zero."
Lorey, who sits in her wheelchair 12 hours a day, got her second wheelchair in 2003. By the time she went to Magee to be fitted for her third on Sept. 10, 2010, her condition had deteriorated enough that she could barely sit in the old chair without pain. Also, the chair was getting old. The motors were loud. The joystick was falling off and the charger was going bad. One control button was held together with tape and plastic bands.
Lorey said she needed more support to stay upright and she needed the tilt mechanism to prevent skin breakdown.
It was November by the time the extensive paperwork was done. The first denial came in December.
After two appeals, Lorey did the third in person on a windy February day she feared might harm her fragile lungs.
A committee peppered her and her mother, Betty, with questions about the more than 40 components in the chair. "They went through every nut and bolt on this chair," Betty Lorey said. "I am not kidding."
Within days, AmeriHealth said yes and the supplier began the complicated process of building the $22,500 chair.
The experience left Samantha Lorey feeling frustrated. "We had all the documents in order," she said. "It's like they didn't even look at it. They denied it to deny it."