Tough mobility challenges, what worked & why
Every client and every customer is important. But deep down, you know they're not all created equal. Once in awhile, something special comes along... a unique need, an intriguing challenge, or a special connection with a client who somehow stands out from the rest. Mobility Management's 2005 Case Study issue is devoted to celebrating these successes. To the clients, mobility dealers and rehab professionals who told us these stories... cheers. To everyone else... enjoy!
CLIENT NAME: Craig Bradburn
AGE: 35; married to Christine
DIAGNOSIS: C6 quadriplegia, complete motor, incomplete sensory. Tendon transfers have improved function in arms and hands. Injured 11 years ago in a motorsports accident.
MOBILITY EQUIPMENT USED: Innovation In Motion Extreme 4x4 power wheelchair.
FABRICATED EQUIPMENT: Mounting systems that fasten snowplow and lawnmowers to power chair.
HOW THEY DID IT: The systems were invented by the Bradburns. "I used to plow the snow with my everyday power chair, and I would just grab a shovel and push," says Craig, who works at a Muncie, Ind., independent living center called Future Choices. But a particularly hard storm proved the need for a better system. "I got tired of getting stuck," Craig says, explaining that Christine had to help extricate him and his power chair from the snow three times. Still, when it comes to plowing, he says, "I'm determined to do it myself. People offer to help, but I say no because it ruins my fun. I love to plow snow. And do yardwork."
The Bradburns discovered Innovation In Motion's all-terrain-minded Extreme 4x4 power chair in a mobility catalog, then "took out a loan and got the chair." Craig once again picked up his snow shovel, only to realize his new chair "sits taller... in a half hour, I broke three shovels." The Bradburns began wondering if they could instead mount or install a shovel on the front of the chair.
"We took a shovel and whacked the handle off and mounted it onto the chair," Craig says. "But I broke the design. So we redesigned it, and I again broke the design. So we came up with our third design, and then I broke the shovel. So I said, 'I'm going to need a real blade.'"
The solution was a plow blade made by Snapper, a lawn and garden company. "It's made for a tractor," Bradburn says of the blade. "Then we figured out a way to mount it using a fourth design." The mounting was fabricated by the Bradburns out of conduit purchased at a hardware store. "We just measured, got the right tubes, and screwed it all together," Craig says. "There was no welding. You can get the chair with a footplate or legrests, so I got it with the footplate and the bracket for the legrests. And that's what I used to mount (the plow) to the chair."
In addition to the plow which is attached in front of the chair Bradburn has a lawnmower system that attaches to the back of his power chair. "In the winter I use the footplate," he says. "In the summer, I use the legrests." The lawnmowers "are like the ones they use on the golf course," Craig explains. "I don't have to worry about motors, gas or starting them up. The only batteries I have to worry about charging are the ones on the chair." The lawnmower hitch that attaches to the chair was created by ProMow, the company that also makes the lawnmower. Craig notes, "It's a 56-inch cut reel mower."
Craig whose snowplow was displayed in Innovation In Motion's Medtrade booth last fall says he has no immediate plans for more inventions, though if the need arises, "I'll figure out a way," he says. The Bradburns' innovations attract plenty of attention from passersby not all of whom realize Craig uses a wheelchair and from neighbors, who "think it's pretty cool," he says. "One neighbor was kind of jealous. He said, 'I'd rather have yours than mine.' And I know the neighborhood kids really gotta hate me, because their (parents) say, 'If that guy in the wheelchair can do it, so can you.' I've taken away every excuse they have."
Just What the Dr. Ordered
REHAB PROFESSIONAL'S NAME: Ken Green, National Seating & Mobility, Lexington, Ky.
CLIENT: Dr. Kim Naugle, chair of counseling and educational psychology department, Eastern Kentucky University, Richmond, Ky.
DIAGNOSIS: T7-8 complete spinal cord injury from motor vehicle accident; paraplegia. Nearly 30 years post-injury.
MOBILITY EQUIPMENT USED: Jazzy 1121 power chair with solid seat pan; seat width is 22", seat depth is 18", and seat-to-floor height is 15". High-profile ROHO dry flotation cushion. 2005 Dodge Grand Caravan minivan with Braun lowered-floor conversion. EZ Lock docking system to secure power chair in the driver's position. Hand controls to drive the minivan.
HOW THE EQUIPMENT WAS FUNDED: The Department of Vocational Rehab paid for the van conversion and the Jazzy 1121.
THE CHALLENGES: In addition to his initial accident in 1976, Naugle injured his left hip in a fall in the mid 1980s; a residual bone fragment and tissue damage led to infection and multiple surgeries. In 1997, Naugle developed an advanced pressure sore with osteo involvement. Treatment and monitoring of this site continues, and Naugle diligently performs pressure-management lifts.
The power chair needed a 22" seat width, but a very low seat-to-floor height of 15" to facilitate transfers and to maximize access to tables, desks and other objects that Naugle encounters every day in his academic environment. The chair also had to safely position Naugle while he was driving.
What Worked: The current Jazzy 1121 custom modified to the required 15" seat-to-floor height replaced another power chair that worked just fine until Naugle took delivery of his new minivan. Ken Green, ATS/CRTS, got a call from Naugle "just before Medtrade last year. He said the chair wouldn't accept an EZ Lock (system). We ended up having to go with another chair that would accept an EZ Lock that would also be 15" from seat to floor." Pride Mobility modified the chair to the special specifications, and Green reports, "It's worked excellent for him."
Naugle concurs. A dedicated professional who needed his mobility system to keep up with the fast pace of college life, he says, "The Jazzy 1121 allows me to continue my lifestyle. I can easily and quickly go wherever I want to go."
A New Level of Independence
PROFESSIONAL TEAM: Amber Yampolsky, MPT, Jackson Memorial Hospital, Miami and Charley Ruckstuhl, ATS/CRTS, Custom Mobility, Inc., Largo, Fla.
CLIENT NAME: Sean Ramos
DIAGNOSIS: Campomelic dysplasia, a rare congenital skeletal disorder that is inherited as a genetic trait. The disorder is typically characterized by a short stature and short, bowed limbs. The bones of the shoulder and pelvic area are often abnormal, and 11 pairs of ribs instead of the usual 12 may be present. There are two forms of this disorder -- the long-limbed form and the short-limbed form. In a majority of cases, this disorder is fatal in infants due to respiratory distress.
Ramos' bones are also exceptionally brittle, and he has a short body. Pain in his hips causes difficulty maintaining an upright seating posture.
MOBILITY EQUIPMENT USED: Permobil Playman Robo power wheelchair with 12" seat width, 12" seat depth, power recline, a seat elevator and a joystick control. A standard rental reclining manual wheelchair and a walker.
HOW THE EQUIPMENT WAS FUNDED: Private insurance.
THE CHALLENGES: Ramos' brittle bones were making his physical therapy difficult. The only form of exercise that Ramos could tolerate with decreased risk of fractures, due to his bone condition, was in the pool. His caregivers were having difficulty with transfers to the pool, so the Robo was suggested by Ramos' physical therapist, Amber Yampolsky.
WHAT WORKED: The chair allows Ramos to transfer to the pool much more easily and independently. The power chair was also recommended because Ramos' arm weakness was making a manual chair difficult to maneuver.
The powered seat function on the Robo allows the user to go from a normal seat height down to the floor, thus allowing Ramos to lower himself poolside. "The seat elevator allows Sean to transfer independently to/from a variety of surfaces regardless of the height of the surface, once again decreasing the need for caregiver assistance," says Yampolsky. The power recline on the Robo allows Ramos to transfer while lying down.
"The Robo is just a really neat chair," says Charley Ruckstuhl, ATS/CRTS, who worked with Yampolsky on Ramos's case. "In addition to going down, it also has a power seat elevator so it gives the user what I like to call 'vertical mobility,' which is something that is very overlooked in our world, especially for children and sometimes for adults."
Ramos, who has used a wheelchair all of his life, got the power chair a little more than a year ago. "Overall, the power wheelchair provided Sean with independent mobility because he is unable to propel a manual wheelchair and was dependent on his caregivers to help him get around," says Yampolsky.
Ramos says the chair "lets me do more of what I want to do." He also says that the equipment has given him more freedom outside of his home. His parents have purchased an adapted van for transport.
"I can travel more, get out of the house and do activities with friends like movies or going out to eat," he says.
Not only does Ramos have the ability to travel more, but the continued physical therapy has made noticeable improvements. "Because I can get out more, people say I look better, healthier and stronger."
Ruckstuhl says Ramos' case is a powerful lesson. "Once a year I personally force myself to ride in a wheelchair just for a whole day or a weekend, just to remind myself what it's all about," he says. "And this is always one of the first things that hits me like a ton of bricks: You're stuck at one level. There's a lot of things that are designed for people who are walking that all of a sudden are just not even accessible at all.
"Some of the funding sources like to call these types of rehab equipment convenience items as opposed to something that will restore some independence. That's something we really need to educate people about as an industry."
In a Position of Power
REHAB PROFESSIONAL'S NAME: Scott Lopez, OT, ATP, United Seating & Mobility, Earth City, Mo.
CLIENT: Pat Frey, 57; mother of three
DIAGNOSIS: T6-7 spinal cord injury from a motorcycle accident in 1968. Pelvic obliquity due to removal of left trochanter, left ischial tuberosity and head of left femur. Pressure wound caused by left femur breaking through the skin. Numerous surgeries to femur and pelvis.
MOBILITY EQUIPMENT USED: Permobil Chairman 2K with Corpus rotational tilt; PinDot ContourU recessed cushion; four-chamber ROHO seat and back; ROHO adapter pad.
THE CHALLENGES: Pat Frey, who lives in a skilled nursing facility, had been bedridden for 15 years when Scott Lopez of United Seating & Mobility set out to build a power chair that would maximize Frey's independence. But Lopez faced a number of challenges:
- 15 years of immobility and bed rest in addition to the natural aging process led to thinner skin and loss of skin elasticity, which put Frey at risk for skin breakdown.
- After her SCI, Frey originally used a manual chair. But a fall from that wheelchair dislocated her left femur, and Frey eventually was injured from repeatedly sliding across her transfer board. The friction and shear caused Frey's femur to break through her skin at the hip and caused "skin breakdown from the inside out," Lopez says.
- Resulting surgery to remove the left trochanter, left ischial tuberosity, and head of left femur left Frey with a pelvic obliquity and, Lopez says, "no stable base of support to sit on." As Frey explains, the surgery "left my leg attached to the rest of my body by soft tissue only."
- Bony landmarks are difficult to identify; bone spur is present.
- Frey has scoliosis, contractures of the knees and ankles, and general atrophy of her legs. She uses a colostomy bag.
WHAT WORKED: Lopez first tried to sit Frey in a more conventional upright seated position -- her wheelchair at that time was designed for her to sit upright but Frey reported acute pain and had trouble breathing. Her left femur was also externally rotated and continuously moved under her body. Frey's preferred position was reclined on her left side. "So we left Pat in that position in her new seating system," Lopez says.
Lopez wanted a mobility system that would allow Frey to recline more comfortably, while also providing pressure relief. Lopez had Frey placed in a molded seating simulator and created a PinDot ContourU cushion to Frey's specifications; the cushion was recessed, and a ROHO pad was fitted into the recess. Thanks to valves that are routed under the armrest, Frey can independently inflate or deflate the custom, four-chamber ROHO seat and back for pressure redistribution -- giving Frey, Lopez says, a "dynamic system." A ROHO adapter pad was placed under Frey's left elbow, since she props herself up on that elbow, and Lopez wanted to reduce pressure there.
A Permobil Chairman 2K power base is fitted with a Corpus rotational tilt that performs weight shifts from side to side while Frey is in the side-reclining position. Originally, the seating system was positioned on the front-wheel-drive chair so Frey could drive feet first. However, Frey preferred to drive head first, so the positioning system was turned around. For safety, Lopez also added a mirror to the chair so Frey can see behind her.
Lopez estimates that more than 60 work hours went into the evaluation, customization and training on Frey's mobility system. However, the rewards are dramatic: Frey spends eight hours at a time in the chair, serves as a phone volunteer and is active in her community.
"Even though I cannot sit upright, I am now able to get out and about, be more independent and do whatever I want!" Frey says. "Before, I was totally bedridden. Only through this wheelchair was I capable of becoming anything in the community again. I found a new life and a new way of helping other people. Had it not been for this chair, I would still be in bed with only a telephone as my (way) out."
Getting the Word Out
REHAB PROFESSIONAL'S NAME: United Seating & Mobility, Earth City, Mo.
DIAGNOSIS: Medicaid wheelchair funding under fire, due to proposed budget cuts.
WHAT THEY DID: When their home-state clients were faced with potentially debilitating budget cuts, United Seating & Mobility (USM) corporately based in Missouri, but with offices in Colorado, Florida, Michigan, Missouri, Ohio, Texas and Virginia decided to spread the word on what their clients would be missing if their mobility equipment were no longer funded.
The first letter, sent to U.S. senators and representatives in March, said, "Hello! I wanted to send you an e-mail about what we are doing in an effort to secure wheelchair funding for people with disabilities. Today and each day for the next couple of weeks, we are going to send real-life stories of our customers who are in wheelchairs that were provided by Missouri Medicaid. In case you weren't aware, Governor (Matt) Blunt recently proposed a budget cut to eliminate wheelchairs from the Missouri Medicaid budget." Attached were testimonials from two USM customers, Pat Frey (see case study in this issue) and Dwain Bollinger. The letter was co-signed by USM president/CEO Bob Gouy and Melissa Georgeoff, director of managed care & marketing.
"Because of the budget situation in Missouri, in the initial proposal, they basically excluded durable medical equipment for adults," Gouy says, explaining the budget threat. "(DME) was placed as a discretionary budget item, which means they have to vote on it every year, instead of it being a guaranteed benefit. When that occurs, they have to then decide what products they're going to cover. And initially they had excluded any DME. So we're fighting to get products back under coverage."
USM'S STRATEGY: Sending out "positive stories about the impact that these products have," Gouy says. "When you expose the representatives to that, they typically have a more positive response and feel more obligated to include the project in the budget."
In addition to mailing, e-mailing and faxing to legislators, USM has sent letters to some 600 press organizations across Missouri, says Georgeoff.
"We've had a number of responses from representatives and senators," Gouy says. And Georgeoff adds, "We've had a couple of responses from the press. In Cape Girardeau, there's a television station that is doing a news story on it, so they're talking with some of our customers."
USM intentionally made the letter campaign very positive and personal. "I don't believe there's much point in threatening people," Gouy explains. "People get pretty agitated about the fact that equipment may get excluded from the budget, but I frankly don't think there's a single senator or representative or governor that wants people who have a need at this level to be put in a nursing home or (have) their independence or freedom (taken away). This is just showing them who the people. They have a different understanding once you do that."
Georgeoff says USM clients were happy to help. "They were all very willing," she says. "And I think it makes a difference that they're all written in first-person." Bollinger's letter, for instance, says, "After a traumatic birth... I was diagnosed with cerebral palsy, and doctors told my parents I would be a 'vegetable.'" But Bollinger graduated high school and went to college. "Today, I am very active in my church and am an avid bowler," he says. "Recently, I wrote a book about my life to help other individuals with disabilities... I would never have made it this far without my faith, my supportive family and the financial assistance from Missouri Medicaid for my wheelchair."
"The disabled population who rely on Medicaid are real stories with real people and circumstances that are unavoidable, most often because of the cost of medicine," Gouy says. "I think if people understand these circumstances, they'll support this."
Mounting Your Own Campaign
As Medicaid programs tighten their belts and national competitive bidding looms, the best defense may be a good offense. If someone from the governor's office or the local TV station asked you to explain what you do and why it's important would you be able to mount a quick offense? Could you think of a few clients and customers who would be eager to speak on your behalf?
Review these tips to be sure you're ready when the call comes.
- Keep an updated phone, fax, e-mail and mailing list your of state and federal. Go to www.aahomecare.org, and type in your ZIP code to find your legislators.
- Maintain client/customer contact information.
- As you work with customers, ask if they'd be willing to share stories of what their mobility/rehab equipment means to them. If they agree, take photos and have them sign releases saying you can use their stories. Keep stories and photos on file so you can access them quickly when you need them.
- Encourage your clients to use details when telling their stories. "My power chair helps me get around" isn't as effective as "With my power chair, I can make my own breakfast and take myself to the bathroom."
Blazing New Trails
REHAB PROFESSIONAL'S NAME: Kevin Clement, ATS, National Seating & Mobility, Atlanta.
CLIENT: Morgan Elyse Clement, 6 years.
DIAGNOSIS: Aicardi Syndrome. Medical conditions include seizures, scoliosis and respiratory issues (see sidebar).
MOBILITY EQUIPMENT USED: Invacare Power Tiger with manual tilt and an ASL head array; Freedom Designs seating; Quickie/Zippie TS with Freedom Designs seating; Snug Seat Manatee bath chair (size 2); Tumble Forms feeder seat (medium) for at-home positioning.
CUSTOM/FABRICATED SOLUTIONS: Motion Concepts padded footplates; headrest pads installed onto angle-adjustable footplates.
HOW THE EQUIPMENT WAS FUNDED: Private insurance and Medicaid.
THE CHALLENGES: Morgan has a partially dislocated hip and is non-ambulatory. She is tube-fed. Her mobility system had to work in multiple active environments both indoors and outdoors, including home (which she shares with her mom, dad and sister Bonnie, 3), school and, most recently, Walt Disney World in Orlando, Fla.
WHAT WORKED: ATS Kevin Clement also known as "Daddy" says he chose the Power Tiger, which is Morgan's primary chair at home and school, for the "electronics package and the chair's reliability and durability." He adds that Morgan immediately memorable for her fiery red curls is "able to move independently in her environment with supervision in one direction at present... when we're out in the open at the mall or something like that. A lot of her driving depends on her seizure state, because she has multiple seizures throughout the day. At school, if the teacher has to run an errand or they're going to the lunchroom, something like that, they'll let her drive straight down the hall."
Morgan also plays baseball in the Miracle League (www.miracleleague.com).
Asked what he's learned and gained from this very personal case, Kevin said, "Professionally, giving someone movement and independence. As a father, seeing my daughter 'walk/run' in her chair for the first time and play baseball."
What Is Aicardi Syndrome?
Aicardi Syndrome, originally identified by French neurologist Jean Aicardi, is a rare genetic disorder thought to affect the X chromosome, according to the U.S. National Library of Medicine. The National Institutes of Health list the effects of Aicardi Syndrome to include infantile spasms and seizures; absence of the corpus callosum, which connects the two hemispheres of the brain and enables them to communicate with each other; mental retardation; and lesions on the retina or optic nerve and other eye abnormalities that can affect vision. Also frequently seen are spinal abnormalities, such as scoliosis.
Aicardi Syndrome is seen almost exclusively in girls, though boys with an extra X chromosome (XXY males) can also be affected. The births of babies with Aicardi Syndrome are often normal, with diagnosis typically occurring when the infants are three to five months old. The overall prognosis for children with Aicardi Syndrome varies, though all such children experience significant developmental and motor-skills delays, and most have delayed speech or no speech. Treatment typically consists of managing seizures and providing early intervention and ongoing therapies to counter developmental and motor-skills delays. There is currently no cure.
Because Aicardi Syndrome is so rare there are only 300-500 estimated cases in the world finding information and support beyond lists of the basic symptoms can be a challenge. The Aicardi Syndrome Foundation (www.aicardisyndrome.org) offers information and the chance to network with other families of children with Aicardi Syndrome. The Aicardi Syndrome Family Outreach (AFSO) located at 3089 Abbotts Oak Way, Duluth, GA 30097; phone 770-495-8435 includes a "Lending Library" dedicated to providing adaptive equipment that is needed, but not funded by insurance and other payers. The ASFO's 2005 "Fore Morgan" Golf Classic will be held October 29 at Furman University in Greenville, S.C., to raise funds for the not-for-profit organization.
This article originally appeared in the May 2005 issue of Mobility Management.