A computer about the size of a frozen TV dinner connects to the top left side of his wheelchair. When Anthony Washington, 31, wants to change his clothes, eat something, watch sports on TV, or go outside for a walk, he swings his head toward the little screen and presses his left temple against one of the on-screen boxes.
The person who most often responds to his requests is his mother, Mary Knapper, a retired nurse. "My husband died five years ago, so this is my husband now," she says, putting her hand on the young man's shoulder.
Her son's wheelchair is motorized and sleek, black with bright-blue metal. "We got this chair because a lawyer decided to tell Anthony's point of view," Knapper says.
She lifts her reading glasses from the cord around her neck and looks through some paperwork. For 10 years, she says, they had tried to get this chair -- without any luck. Her son's doctor and physical therapist had first prescribed a motorized chair for him in 1993. But the Louisiana Medicaid program kept denying their claim -- in 1993, 1994, 1997, and 2000. Anthony Washington could not receive a motorized wheelchair, said the state, unless he attended school or had a job.
That restriction was unlawful, according to a lawsuit filed in June 2002 in the federal court in New Orleans. Federal Medicaid guidelines, says the complaint, specifically prohibit states from denying medically necessary equipment for non-medical reasons.
The suit was filed against the state Department of Health and Hospitals (DHH), which administers Medicaid in this state, by the Southern Disability Law Center, New Orleans Legal Assistance (formerly NOLAC), and Acadiana Legal Services in Lafayette. The named plaintiffs were three people whose motorized wheelchair prescriptions had been denied by the state solely because of Louisiana's "school or work" requirement.
At first, DHH attorneys said they wouldn't change the "school or work" rule, says Southern Disability Law Center lawyer Maureen O'Connell. But by August 2002, they had agreed to alter the rule. By November of that year, the state approved wheelchairs for all three plaintiffs.
Law center attorneys had submitted Washington's paperwork to the DHH in September, advising that they would be adding him to the lawsuit if he didn't get a wheelchair. Soon, his wheelchair was also approved.
Things seemed to be going in the right direction, says fellow law center attorney James Comstock-Galagan. "In effect, it looks like we won," he says, "because the state said, 'We'll change that rule.'"
In September 2002, the state issued an emergency rule governing how the state Medicaid program would authorize motorized wheelchairs. (It can be found online on pages 1280-81 of the Louisiana Register: www.state.la.us/osr/reg/0307/0307NOI.pdf).
Once the state issued this rule, it became clear to Comstock-Galagan that it was just as exclusionary as the first rule -- maybe more. Late last month, at a hearing in Baton Rouge, people had a chance to make public comments about the rule. DHH is now deciding how to respond.
Like the other attorneys involved in the June 2002 court case, the lawyers from the Southern Disability Law Center were critical of what they called "unnecessary barriers" to getting wheelchairs. Applicants must meet all of a long list of criteria. For example, they asked, why did potential wheelchair recipients now need to suffer from a "muscular or neurological disorder/condition"? This could deny wheelchairs to people with shortened or missing limbs due to prenatal conditions or an accident. And why were potential recipients now required to be strictly "bed or chair-confined" when some people with cerebral palsy or other conditions are able to walk short distances but require a wheelchair to really move around?
DHH attorney Christine Arbo says that some of these points could be clarified and that they do not eliminate anyone who truly needs a wheelchair. The department, she says, is simply trying to ensure that they receive all the proper information before making decisions on any wheelchair request. "Not everybody who wants a motorized wheelchair is going to satisfy the criteria," says Arbo. "But if it's genuinely medically necessary and the person needs it, there's nothing in this rule to prevent them from getting it."
For her part, O'Connell believes that some of the new criteria were set up as a convenient new loophole. "It seems as though the state just wants a basis by which they can deny people wheelchairs. Before it was, 'You're not in school or work, we can deny you.' When it was no longer possible to do this, they had to develop something else," she says.
Medicaid rules are certainly frustrating for parents who know that their child needs a power wheelchair, says Knapper. "I believe that the people who make up all these rules and conditions don't know about disabilities," she says.
Knapper emphasizes that she is not naive -- she knows that cost savings motivate some of the rules. And in this sputtering economy, Louisiana, like every other state, has been trying to keep its Medicaid expenses down.
That's especially difficult because Medicaid enrollment numbers are growing, due partly to the poor economy and declining employer health-insurance coverage. Today, Medicaid insures one in seven Americans -- one in five children.
However, even though children make up exactly half -- 50 percent -- of the nation's 51 million Medicaid enrollees, the cost for their care is only 18 percent of the Medicaid budget, according to an August 2003 report by the Kaiser Commission on Medicaid and the Uninsured.
For the blind and disabled, the numbers are almost flipped. The disabled make up only 16 percent of Medicaid but the cost for their care make up 43 percent of the Medicaid budget. And so, when Medicaid programs begin to cut costs, the disabled are likely to be affected right away.
Louisiana's Medicaid program pays markedly less per recipient than other states, even when you consider that, for every dollar spent on Medicaid recipients in this state, the federal government pays approximately 70 cents and Louisiana pays 30. For the latest year available, the Louisiana Medicaid program spent $1,601 per disabled child and $6,649 per disabled adult. Nationwide, Medicaid programs spend $11,770 per disabled recipient.
When she's not in her wheelchair, Ashley Kreyssig -- all 30 pounds of her -- likes to drive the pink, electric-powered Barbie car that her grandfather souped up for her. "I took the switch from the pedal that makes it move and put that on the steering wheel," he says. "So she's definitely got experience driving."
It's an important point for her grandfather because Medicaid has, three times, denied Ashley a power wheelchair, saying that it isn't clear that she can operate it safely.
This emphasis comes from the new rule, which specifies safe operation in several sections. There's a general worry among advocates that the new, vague safety requirement may be used as a catch-all excuse for any claim that DHH would like to deny.
Kreyssig is 6 years old and 39 inches tall, diagnosed with spinal bifida. She lives with her grandparents, Fred Kreyssig, 65, a retiree who worked 48 years in construction, and his wife Lanell, 62. The couple lives 16 miles south of Bogalusa and have had custody of their blond-haired, blue-eyed granddaughter since she was born.
"Ashley's got a brilliant mind -- she'll talk your head off your shoulders," says her grandpa. But she can't walk. For more than three years, she's had a manual wheelchair -- one that she propels by hand. She's now outgrown that, and so the physical therapist at her school suggested that she get a power wheelchair, since her manual chair gets stuck on the carpeted floors at school. As a result, she must be pushed by an aide everywhere she goes.
A motorized chair is also becoming a necessity, says her grandfather, because Ashley now has a problem with her left wrist. She has started to propel herself by putting the lower section of her left arm onto the wheel of her chair. That could be related to the fact that the left side of her body is "drooped," he says, due to two missing ribs on that side.
Southern Disability Law Center attorney Maureen O'Connell says that, until recently, most doctors used to believe power wheelchairs were inappropriate for children. "It was only eight years ago that I first heard of a 3-year-old in a power wheelchair," she says. "The practice has changed tremendously over the past few years, and I don't think we're keeping up with that." The most current research, she says, shows that physical mobility in young children plays an important role in cognitive and social development.
Patients who once could not have operated a wheelchair are now able to use a head switch -- like Anthony Washington does -- or a mouth device called "sip and puff." There is even a device that slips into the mouth like an orthodontic retainer and allows a person to steer by touching the tongue to different sections of the mouthpiece.
Yet, even if the technology is there, the money may not be, says DHH spokesman Bob Johannessen. He explains that the department has an obligation to Louisiana taxpayers "not to allow Cadillac services for everybody" -- in other words, to keep costs at a reasonable level.
Johannessen says that the state of Louisiana spent $16.6 million on powered and customized wheelchairs between July 1, 2002, and June 30, 2003. That's an average of $3,538 per wheelchair. Of the 4,708 wheelchair services requested, only 27 were denied, he says.
"Those numbers defy reality," says Comstock-Galagan. "It's simply not true that only 27 people have been denied wheelchairs within the past year." He believes that most of the recipients were given custom manual chairs even if they requested motorized chairs. "They may have been approved," he says, "but not for the chair they requested and require -- a power chair."
The numbers also seem fishy to a certified Louisiana wheelchair expert who asked not to be named because he has to deal with the state Medicaid system every day. In Medicaid terminology, he's known as a durable medical equipment provider. He's the person who puts together all the paperwork and submits it to Medicaid.
"The state is doing everything they can not to pay for power chairs. That's it in a nutshell," he says. "With most other equipment -- beds, stuff like that -- you may see one denial. But I'm seeing four, five, even six denials for one power chair. Every single one of our requests has been denied at least once. I have people who absolutely need power chairs and they can't get them."
The DHH budget numbers also suggest that the majority of their approvals were manual chairs, since custom manual chairs run from $1,500 to $3,000, he says, and an average power chair runs between $5,000 and $7,000. Each chair will last about five to seven years with maintenance.
Perhaps the state is concerned about opening the floodgates, he suggests, because the state had denied power-chair claims for several years under the "school or work" requirement. "From 1996 to 2002, if you did not work and you didn't go to school, you did not get a power chair. You got a manual chair."
The new rule says that anyone who got a manual chair from Medicaid is ineligible for a power chair. Johannessen, however, says that they will reconsider those cases if they're re-submitted. He also emphasizes that, while cost savings are important, the patients' medical needs come first.
Johannessen says that the program in Louisiana has demonstrated that it can change with the times. "Often those changes are prompted by advocates who have put pressure on the department to make changes," he says. "But just as many times, the changes are made by the department, which recognizes that health care should be in keeping with new technology."
Kreyssig says that he soon plans to ask for an official Medicaid hearing so that he can present his evidence -- letters from his granddaughter's orthopedic doctor and her therapist. In order to satisfy the safety requirement, there will also be a live demonstration of Ashley driving her pink Barbie car.
Kreyssig says that he worked all his life and he's not trying to stand there with his hand out. But he and his wife cannot afford a chair for Ashley. He's tried to do what he can, he says. He's built ramps on the house, and he's altered furniture to fit her better.
But he can't quite make a motorized wheelchair. "At this point, if I could figure out a way to take a manual wheelchair and put a motor on it, I would," he says.
There it is on video, one of Anthony Washington's maiden voyages in his new chair. Trailed by older brother Aaron, 38, "the deuces" -- Aaron's 7-year-old twin sons -- and a personal health aide, Anthony zips along, tipping his head back toward the wheelchair control and steering his new chair down an open stretch of sidewalk. Mary Knapper holds up her video camera to show off the footage.
At one point, Anthony slows down to a crawl. He's simply being cautious, she says, pointing at the cracked and tilted sidewalk.
Once again, Anthony Washington is defying expectations.
His mother, a New Orleans native and a sister to the late jazz trumpeter Milton Batiste, recalls her pregnancy test more than three decades ago. She had been exposed to measles six weeks prior, she says, and so she was warned that her baby might be very small.
Anthony Gabriel Washington weighed just over 6 pounds when he was born in September 1972. But he didn't score well on routine newborn tests. He has since been diagnosed with severe cerebral palsy and termed "profoundly disabled." He can't use his limbs, and he can't speak. But he can see and hear and move his neck and head.
From the start, doctors urged Knapper to commit him to an institution. They told her that she couldn't properly care for him, that he would only live to be 18 months, would never develop, and would be a burden on her the rest of his short life. "They didn't know that we have Batiste blood running through these veins," she says.
Washington is the youngest of Knapper's five children. "My dear friend here is my baby," she says, leaning over him. He laughs noiselessly in response, his mouth wide open and all of his teeth showing.
When he was 10 days old, Knapper recalls, she gathered together her family -- her husband and the four older kids. She had created little pieces of paper that said either H, for home, or I, for institution, and she asked everyone to put their votes in a hat. "I had six H's," she says.
With the help of his older siblings, Washington attended public school and graduated from Alcee Fortier Senior High School. The school system then had almost no one to work with him, says Knapper, and he had only had one real means of communication: his eyes. He'd blink one for yes and two for no, she explains. "And when he didn't want to be bothered, he'd close both eyes and turn his head."
Then, when he was 19, Washington found a voice. Meher Banajee, a speech-language pathologist from the Human Development Center at Louisiana State University, sat down with him and showed him a computerized device. Within 15 minutes, Banajee had him "talking," through the computer. "I thank this woman every day," says Knapper, who had been given solid confirmation that her son could learn. "All of my kids are good students -- 3.5 GPA," she says. "I felt like Anthony was no different."
She now knows her son has strong opinions. He loves Michael Jackson's music. Jerry Rice is his favorite football player. He's a die-hard Saints fan even if they're losing. And he admires Bill Clinton, says Knapper. "He also hasn't been too keen on the war in Iraq and the fact that his brother was in it."
Prior to his high-school graduation, Knapper had looked high and low for post-high-school programs for Anthony. There were none in Orleans Parish. She even tried -- for five years running -- to start a program for disabled adults and seniors, but finally gave up. So when her son was denied a power wheelchair because he wasn't working or in school, she thought it was especially unfair. Because of the lawsuit, she now believes it was also unlawful.
Today, it's cool and a little overcast, a good day for a mother-son walk, an activity made much easier by the new chair.
As usual, he'll tell her what clothes he wants to wear. Then he'll check in the mirror for his goatee -- he likes having that. Via his computer, he will probably remind her to put on his baseball cap. She'll hold the door open while he drives the wheelchair down the front ramp, lined all along its length with Knapper's clay pots filled with plants and flowers.
Knapper sees this wheelchair as a way for her son to be somewhat independent. "Today or tomorrow, if the good Lord decides to take me away, I don't expect anyone else to do what I do," she says. "With this chair, he can advance and do more things on his own."