General Publications
Custom Orthotic Seating

 Carlson JM, Lonstein J, Beck KO and Wilkie DC. "Seating for Children and Young Adults with Cerebral Palsy," Clin Prosth Orthot 11(3):176-198, 1987. (Reprint Permission Pending)

 Rovig S and Hasdai A. "Randy Moves On," TeamRehab Report, March 1997.

Carlson JM, Payette MJ and Vervena LP. "Seating Orthosis Design for Prevention of Decubitus Ulcers," J Prosth Orth 7(2):51-60, Spring 1995. (Reprint Permission Pending)

Medical Insurance Reimbursement

Corbet B. "Dark Matter" New Mobility 8(48):6, Sept. 1997.

Corbet B. "Custom orthotic seating: A hot technology gets a cold shoulder from Medicare," New Mobility 8(48):26-31, Sept. 1997.

Corbet B. "What's your story?" New Mobility 8(50):6, Nov. 1997.

Fulton J. Letter to the editor, New Mobility 9(62):10, Nov. 1998.

Specialized Seating Systems

 "A new, upright outlook: Specially tailored device lets man with no lower body sit up in comfort" by Gordon Slovut, Star Tribune Staff Writer, 17 August 1994.

""Amputee finds Medicare to be quite an obstacle" by Glenn Howatt, Star Tribune Staff Writer, 27 August 1996.

Carlson JM and Wood SL. "A flexible, air-permeable socket prosthesis for bilateral hip disarticulation and hemicorporectomy amputees," J Prosth Orthot 10(4):110-5, Fall 1998. (Reprint Permission Pending)

Continuing Education Activities
"Orthotics Team Teaches, Learns in Latin America," O&P Business World 1(2):18, Spring 1998.



Clinical Prosthetics and Orthotics
Volume 11, Number 3, pp. 176-198
1987

Seating for Children and Young Adults with Cerebral Palsy
J. Martin Carlson, M.S., C.P.O.
John Lonstein, M.D.
Karen O. Beck, R.P.T.
David C. Wilkie, B.F.A.

Reprint permission pending


TeamRehab Report
March 1997

Randy Moves On

Sherry Rovig
Aya Hasdai, OTR

Randy Pavesich is an outgoing teenager who is no stranger to assistive technology and custom seating.  Now a 17-year-old attending Byron High School in Byron, Minn., he was diagnosed with congenital spastic choreoathetoid quadriplegia and received a power wheelchair at age 12.  Randy loves telling jokes and making people laugh.

Randy believes that as a maturing young man, it's important for him to have more control over his environment, which his new power wheelchair and seating provide.  Being able to turn his chair off and on and maneuver himself through his high school is important to his sense of independence.

Please visit TeamRehab Report's Web site to see the full text of this story, with details of how Randy's team put together his seating, mobility, control and communications systems.


Journal of Prosthetics and Orthotics
Volume 7, Number 2, pp. 51-60
Spring 1995

Seating Orthosis Design for Prevention of Decubitus Ulcers

J. Martin Carlson, MS, CPO
Mark J. Payette
Lisa P. Vervena, MS

Reprint permission pending


New Mobility
Volume 8, Issue 48, page 6
September 1997

Bully Pulpit:
Dark Matter

Barry Corbet, Editor

Astronomers say that 90 percent of the universe is invisible, undetectable except for its influence on visible matter.  I suspect the Health Care Financing Administration--the agency that sets policy for Medicare and Medicaid--is like that.  Mostly dark matter, with endless influence.

I don't have Medicare or Medicaid.  I have a private policy I've maintained since before they were born and before I was hurt.  But HCFA reached out and touched me this week when a false factoid crept into a medical supplier's computer.  It wasn't HCFA's fault the computer somehow convinced itself I had a "federal" policy, meaning that Medicare reimbursement rates and exclusions would apply.  HCFA's role was only to determine those rates and exclusions, which were, respectively, low and many.  It left me with an unpaid balance that suddenly jumped from darkest outer space into my mailbox.

When I switched to a power wheelchair two years ago, it took an unconscionable time for my insurer to agree to pay for it.  The DME dealer was afraid that my policy would pay only Medicare rates--a maximum of $2,800 on a $15,000 chair--so I beat around in an antique loaner for months.

My brushes with HCFA were relatively benign.  People who are denied attendant care because of Medicare's bizarre homebound rule--see "Homeward Bound" in this issue--have a lot more reason to complain.  Forget ADA's mandate to promote integration.  HCFA wants you in your house or off their books.  If current proposals are adopted, you'll get time off for good behavior--16 hours of nonmedical leave a month.

Marty Carlson, whose seating systems could prevent thousands of pressure sores a year--see "Custom Orthotic Seating," also in this issue--has equally good grounds for complaint.  That part of his business is on the rocks because an arbitrary 1994 HCFA ruling reimburses him at only a small fraction of his cost.  Consequently, the host of insurers that base their reimbursement on Medicare's policy have followed suit.  Consequently, the technology hasn't spread beyond Minnesota.  Consequently, almost nobody anywhere who needs the seating gets it.  Consequently, they do get unnecessary pressure sores.  Consequently, federal and state government (meaning taxpayers) and all other insurers (meaning policyholders) pay for the unnecessary surgeries and hospitalizations.  That's a lot of consequentlys, but the baby was resolutely thrown out with the bathwater.

And you do remember, don't you, HCFA's affinity for nursing homes and its aversion to diverting some of those funds for community services?

Nursing homes for disabled people were never a good idea, and it's worse now.  There were, at one time, reasons for the homebound rule.  There was, at one time, a need to root out fraudulent seating.  But HCFA's influence in our lives is way too pervasive for us to tolerate outdated policies.

After the Big Bang, astronomers say, there was an expanding universe of mostly dark matter.  When maximum expansion is reached, they further theorize, a Big Crunch will follow.  HCFA, beware.  Come to the light.Reprinted with permission from New Mobility.


New Mobility
Volume 8, Issue 48, pp. 26-31
September 1997

Custom Orthotic Seating: A Hot Technology Gets a Cold Shoulder from Medicare

Barry Corbet

You get out of rehab, and you're a flash on wheels.  But you're no fool--you know pressure sores can become a problem, so you use the best cushions money can buy and you do your weight shifts religiously.  Ten or 20 years later, you've got your first sore.

You nurse it.  You spend a lot of time down, maybe cut back on work and definitely on play.  The sore heals, but it keeps coming back.  You change to another cushion, work on your posture and rip the back pockets off your Levi's.

One time the sore comes back and doesn't go away.  A doctor suggests a "definitive closure," meaning a flap surgery.  You're tired of messing around, so you take the fall.  You spend six weeks flat and the problem is solved.

I own a $400,000 butt myself, or at least the co-paid part of it.  Blue Cross holds title to the other 80 percent, and it seems like it's been that way forever.
--Barry Corbet
Until the nightmare recurs.  And recurs.  You're battling cumulative history now, and every new surgery adds to your risk.  So does worsening scoliosis and pelvic tilt.  The plastic surgeon has to look farther from the wound to find replacement tissue, so he starts robbing shark bites from Peter (your legs, usually) to pay Paul (your butt).  And the older you get, the more vulnerable your skin becomes.

Then the bone mass becomes infected, so you scorch your veins with vancomycin for six weeks.  Each hospitalization now costs about $70,000 and a big chunk of your life.  I know whereof I speak:  I own a $400,000 butt myself, or at least the co-paid part of it.  Blue Cross holds title to the other 80 percent, and it seems like it's been that way forever.

Butt Tales
It's been 20 years since Angela Lodmell's car accident.  She's still only 30 years old, but she's seen it all.

As a teenager, she was as active as a T5 para can be.  She couldn't abide being told that she always had to be sitting on a good cushion, because it meant staying in her wheelchair.  If it came to a choice between doing more and pampering her skin, she usually opted for doing more.  Sometimes that called for riding a horse, not a chair.

"When I was 17," she says, "I thought that because I hadn't had a pressure sore, I wouldn't ever get one.  But just because there isn't one today doesn't mean there won't be one tomorrow."  One day there was one.  And many more.  "After the first one, it was never the same.  I had scar tissue and it just kept getting worse."

Lodmell can't remember how many pressure sores she's had, or even the number of flap surgeries.  "At least a half-dozen muscle flaps," she estimates.  She progressed from foam cushions to gel to air, and the sores kept coming.  In 1989, an infection that came with a sore cost her a leg.  In 1995, she lost the other leg and part of her pelvis.  What next?

"If I get another pressure sore," Lodmell says, "there's nothing left to fix it with."

It should be said that while off-the-shelf wheelchair cushions didn't work for Lodmell, they do work for most people--at least for a number of years.  But what do you do when they don't, when surgery follows surgery like the marching seasons, when your life's work becomes protecting your skin?  Butt transplants are not currently feasible.

Here's what some people living in Minnesota did.
William Spann is 48.  He's had a C5-6 spinal cord injury for 29 years, and no end of pressure sores.  One of them kept him in bed for two years.  He's had six flap surgeries.  But three years ago, he paid a visit to Tamarack Habilitation Technologies in St. Paul, and his skin has been problem-free ever since.  "It's given me the opportunity to be up 12 to 15 hours every day and it's just great," Spann says.

Stephen Felton, 32, became a C4-5 quad in 1983, and got a pressure sore right off.  A flap surgery followed, then two more, all on the right ischium.  He tried different cushions, but the outcome was the same.  "For awhile," he says, "I was in and out of bed all the time and going downhill."  After Tamarack custom-designed his seating, he says, "I haven't had a breakdown.  It's changed my life."

Alice Ruch is 70, and has been an L6 para since 1968.  Pressure sores?  "My backside looks like railroad tracks," she says.  She's had nine skin surgeries, with another needed every year.  Her surgeon told her she was at the end of the line--he couldn't do any more cut-and-paste.  Ruch, too, has had problem-free skin since Tamarack built her seating.  "Not that I can feel it," she says, "but I can't tell you how much I enjoy this seat."

Rick Cardenas, after 37 years as C4-5 quad, had his first skin breakdown two years ago.  He had sores on his tailbone and hips, and they got worse until the bone was infected.  For Cardenas, Tamarack's molded seat has made all the difference.  "It gives you a whole lot of confidence in what you can do," he says.  "It removes a huge area of concern."

Steven McKeever, 44, a C5-6 quad, didn't have sores because he couldn't sit long enough to get them.  "They were a concern," he says, "but I had severe low back  pain.  I had to limit the hours I sat up so that limited the pressure sores."  McKeever got relief with a molded seat that removes pressure from his lower spine.  "It works for both the pain and the pressure sores," he says.  "I still have pain, but it's nothing like what it was.  It doesn't limit my quality of life at all"

Paul Walsh, 41, a T8 para for 12 years, also had back pain. Until he got to Tamarack, he says, "I just endured the pain." Afterward? "It really was a dramatic difference. To go this long without major skin or back problems is just a real positive thing."

Don Bania Jr., 45, a C3-4 quad for 27 years, says he's had hundreds of sores over the years, although he has avoided surgery through vigilance. "I've had this cushion about three years, and I have not even had a pink spot," he says. "I feel like I've been born again."

Robert Fenn, 36, after 16 years as a C5-6 quad, was just beginning to develop skin problems. They went away when he changed to Tamarack's seating. "I kind of feel bad for anyone who doesn't have one of these," he says.

And Angela Lodmell? She required very different answers, but she also got them from Tamarack. Because of her amputations, her seating is a bucket that distributes pressure. But it works for her, and she's actively raising her 8-year-old daughter and planning to go back to school.  The tragedy? If she'd had--and used--custom seating from the beginning, she would probably still have her legs. "If I had known years ago what they can do," she says, "I might have been in there designing it with them. They probably could have accommodated my need for mobility and my need for saving my skin."

Basics
The solution for all these people has been orthotic seating. "Orthotic" just means that it's used to brace or assist a part of the body, and is custom-designed by definition. If you want to spitshine the ortho-talk, they're all using a "spinal orthosis."

There's nothing startling about the technology. Its key elements have been applied for years to upper- and lower-limb bracing, and even to pediatric seating. What has not been done traditionally is to extend custom orthotic design and fabrication methods to the seating problems of adults with spinal cord injury and other neurological impairments.

Marty Carlson, president of Tamarack, has been building seating for children since 1974, and for adults since the early '80s. Applying orthotic techniques in new ways, he and his colleagues have come up with seating that often prevents skin breakdown when conventional cushions don't.

The basic principles are simple: Fit the device to the person with custom contouring. Shift pressure from areas that can't handle it to areas that can.  Improve and stabilize sitting posture. Avoid shear, moisture and heat buildup.  Design for functional considerations, such as transferring, driving stability and clearance under tables and work surfaces.

Basic materials: plastic and foam, sometimes a little leather and Velcro. Basic technology: contact molding, elbow grease and a boundless willingness to fine-tune the product.

The concept of molded seating might conjure up images of restricted motion, and Tamarack's Sherry Rovig acknowledges that some people--paras more than quads--initially do feel more constrained. Yet with the expected exception of Lodmell, the wheelers I talked to all feel their movement is unrestricted. And, uniformly, they're thankful they no longer slide forward in their chairs.

"You're pretty planted, and that's what you need," says Fenn. "I used to have to stop wheeling every five strokes or so to slide my butt back in the chair. I don't have to worry about that now." Fenn, in fact, thinks the technology should be used for athletic seating in kayaks, water-skis or four-wheelers--anywhere there's a need for stability and skin protection.

The beauty of any custom-designed device is that it can be tailored to the customer's needs. Both Fenn and Felton are unusually tall, and have long fought one-size-fits-all merchandising. Tamarack easily accommodated them.  Lodmell's seating is attached to her, not her wheelchair, so she finally can sit safely anyplace she can transfer. Fenn's was designed to accept a portable chemical toilet--a boon on camping trips, he says--and Felton's has a quick-release attachment that allows him to use the seating on both his manual chair and his power recliner. Although Tamarack much prefers tilt-in-space to reclining because it minimizes shear, Felton is delighted that he no longer needs to recline for weight shifts.

The flexibility of custom seating encourages hybrid designs. Many of Tamarack's systems integrate a custom-contoured cushion with a ready-made gel component. The back can be integrated with the base, or made as a separate piece. Or a base can be--and frequently is--combined with a custom corset. A removable urinal block can be incorporated, or supports can be added for stability while driving. The seating can be integrated with computers, environmental controls or augmentative communications devices. Or the molded cushion can be interchangeable with a conventional cushion. It's a design intended to ease the break-in period, but Fenn still appreciates the option. "It's like having more than one pair of shoes," he says.

Caveats
There is an inherent flaw in all wheelchair seating, including custom orthotic systems. A change in one part of the system affects the others. If you raise your footrests, you'll add pressure. If you change the back angle, you'll change your posture. And if your body changes, the seating should follow suit.

For Beverly Barfknecht, 47, a T7 para since 1962, a sebaceous cyst erupted into a large pressure sore and the familiar story began. She healed the first sore on a conventional cushion, but several more followed.

It wasn't a smooth transition to orthotic seating. Hers has built-up sides for support, and hitting the side during transfers has given her a sore. Her scoliosis has increased, and that's not helping. Because she had a rash, she switched back to her old cushion for awhile. That's what did her in, she says.  She's having new skin problems, yet she remains a believer in orthotic seating.

"If I were not sitting in this cushion," she says, "I'd have to lie down every two or three hours to get off my butt. I'd be miserable. I'm going back in July, and we'll work out the bugs."

George Reeder III, 40, a C5-6 quad since 1977, had an ischial sore that required flap surgery three years ago. It didn't take, so he had another.  During his 90-day stay in the hospital, Tamarack was brought in to make a body mold.

"What happened," Reeder says, "is they took all the weight off that area and spread it to everywhere else. I ended up getting a sore on the other ischium. It just blew out of nowhere last September. I'm trying to adjust [the seating] myself, but it's not healing right, so I've got to go back in."

But Reeder puts in prodigious days--up by 8 in the morning, to bed at midnight with no time down during the day. "I push my luck," he concedes, "but I can't stand lying in bed."

Brian Shaughnessy, 38, a C5 quad, began getting sores 10 years ago. "For every day I was up," he says, "I would have to spend two in bed. I got a seating system from Tamarack that's worked really well for the last five years." But last year, a sore started to come back. The problem was increased scoliosis, and the solution was to add lateral support. He's had another recurrence since then, but it's minor and he still thinks he's got the right seating. "I don't spend months in bed any more," he says. "It's not a forced exile."
Rovig warns that people can come to trust orthotic seating too much, and Carlson notes that it requires a willingness to change. Of Tamarack's few failures, he says, most were a result of his clients being unable to give up behavior that no longer works. "As you get marginalized functionally," he says, "you have to depend on what works or you get into trouble. But sometimes that stops people from making the changes they need to make."

Yet Paul Walsh sees his transition to orthotic seating as an investment that has already paid off: "I've had several fusions, Harrington rods put in, and a rib graft on my spine. I looked at the seating as a way to prevent further surgery, and that's so far been the case."

"I don't understand why insurance companies wouldn't want to spend a little more money on this,"adds 40-year-old Steve Burrill, C5-6, another convert to orthotic seating."I know from the six weeks I spent in the hospital after my first sore that that's more expensive."

Not all insurers see it that way. "I'm in limbo," says Shaughnessy. "I have Medicare, and they would rather pay for surgery and hospitalization than spend a fraction of that for preventive seating."

Orthotic seating might seem like an answered prayer for anyone with a history of pressure sores--and any insurer that wants to save money--but during the last three years, getting paid for the technology has been like pulling teeth. For people who rely on Medicare and  Medicaid--and even for many with private insurance--custom orthotic seating is effectively out of sight and out of reach (see sidebar).

Until that changes, people with recurrent pressure sores will continue to face spending the rest of their lives in bed, and rehab professionals will continue to proclaim that decubitus ulcers are uniformly preventable.

Marty Carlson is a measured man, but he responds passionately to that quasi-medical dictum. "Sure they're preventable, if you remember to do weight shifts and do everything else right for your whole damn life. It's like the pope saying pregnancy is prevented by the rhythm method. It's like saying a plastic surgery didn't work because the patient was noncompliant. It's often bullshit, because the skin condition may not allow a single lapse, not a single mistake. You can't expect real people to lead perfect, error-free lives."

Carlson knows he can't make any absolute claims for his seating systems, but he insists they can allow us to live in less jeopardy. "They're not the answer for everybody," he says, "but we do widen the margin of safety so you can make some real-life mistakes."

For more information on Tamarack Habilitation Technologies, contact
1471 Energy Park Drive, St. Paul, MN 55108-5204; 651/644-9950.

Where's the Orthotic Seating?
With all the success stories and the proven technology, why aren't people with intractable pressure sores--and their doctors and therapists--demanding custom orthotic seating?  Why aren't orthotists everywhere offering it?

Orthotic seating is expensive, admits Marty Carlson, president of Tamarack Habilitation Technologies in St. Paul.  The time and skilled labor required can drive the cost to $5,000 and more.  Compared to a $400 cushion, it's a lot.  Compared to repeated hospitalizations, loss of income and disrupted quality of life, it's peanuts.

Some insurance carriers see custom orthotic seating as a good investment.  But in 1994, Medicare threw up a roadblock that cut off most reimbursement for orthotic seating and denied people with disabilities what may be their best shot at preventing skin breakdown.

In the early 1990s, Medicare changed its reimbursement codes to exclude a flood of junk positioning products being aggressively marketed as "spinal orthoses" to nursing homes.  "They were nothing but cushions," Carlson says.  "The prices were outrageous and the efficacy was nil."

The changed codes still left three categories for "orthotic" or "custom-fabricated" seating reimbursable under the "brace benefit," and Carlson didn't expect the good orthotics to be thrown out with the bad.  But in 1994, Medicare began interpreting the codes to exclude from the brace benefit all orthotic devices intended for use on a wheelchair.  If it's used on a wheelchair, Medicare decreed, then it's not an orthosis.  Since that ruling, Medicare has put all custom orthotic seating into a category officially labeled as "inexpensive, routinely purchased."  In effect, that means only off-the-shelf cushions are adequately reimbursed.

In addition, Medicare has imposed maximum allowables that cap payment at absurdly low levels.  Together, these actions have ruled out custom orthotic seating for anyone insured by Medicare or Medicaid or by any of the many private insurers that use Medicare's coverage policy and reimbursement rates to guide their own.  As goes Medicare, so goes much of the industry.

And as went Medicare, so went the spread of orthotic seating beyond its birthplace in Minnesota.  Because reimbursement is denied, orthotists haven't learned how to design it.  "If they're not going to be paid for it," says Carlson, "they've got other things to do."  Doctors and therapists haven't learned when to prescribe orthotic seating, and people with disabilities don't even know it exists.  Carlson is a tireless advocate, but Tamarack's seating may become an orphan technology.  Orthotist meets Godzilla.

There is hope for improvement.  Medicare's reimbursement policy is set by the Health Care Financing Administration.  HCFA Ruling 96-1, preventing full reimbursement for orthotic seating, was recently challenged in court by several orthotists.  On May 19, Judge Morris Lasker of the U.S. District Court in Massachusetts declared HCFA Ruling 96-1 void and issued an injunction against its enforcement.

Will it solve the problem?  Time will tell.  "The government frequently ignores court orders unless there's a public outcry," says Carlson.  Want to help?  Become part of that outcry.  HCFA and Medicare need to hear from the butts at risk.  Contact Thomas E. Hoyer, Director, Chronic Care Purchasing Policy Group, HCFA National Headquarters, 7500 Security Blvd., Baltimore, MD 21244 410.786.5661.
THoyer@HCFA.gov.**

** This address is updated from the original listing in the article, and was accurate as of Jan. 1999.

Reprinted with permission from New Mobility



New Mobility
Volume 8, Issue 50, page 6
November 1997

Bully Pulpit:
What's Your Story?
Barry Corbet, Editor

Hugh Gallagher has sometimes accused me of using this magazine as my hidden autobiography.  He's right; I have inflicted my life upon you for years, and have no intention of stopping now.

The September 1997 issue contained a story about how custom orthotic seating can prevent recurrent pressure sores.  But as Hugh quickly noted, I was once again writing about myself.  I'd been working from bed for four months by the time I finished that story, and was thoroughly sick of the sedentary life.  So my brother packed me onto the bed in the back of my van and drove me 900 miles to St. Paul, Minn., the birthplace--and still the only cradle--of custom orthotic seating.

Ten days later, I was able to drive home myself.  In those 10 days, I went from having every prospect of spending the rest of my days in bed to once again having an active life.

My skin could still break down before the next coffee break, so it's way too soon to declare victory.  But I can't pretend dramatic change didn't happen, either.  This isn't seating that is only marginally better than what is routinely prescribed in rehab centers across the country; it's an order of magnitude better.

It's not that it looks that different.  It doesn't.  But it makes a point that should be obvious and isn't: With critical skin, seating has to be made to the person.  Mine fits me and nobody else.  Why in hell do we persist in expecting miracles of cushions made to fit some hypothetical butt?

If I'd had orthotic seating seven years ago, I could have skipped five surgeries, $400,000 in medical expenses, a year in bed at home, 10 months in bed in hospitals, and the cost and inconvenience of a power reclining wheelchair.  I could have attended two family weddings, two family funerals and several family vacations that I missed because I couldn't travel.  I could have had a social life.  There are thousands of people who are similarly trapped and could be similarly released.

I could be angry at rehab's ignorance of custom orthotic seating, or at the Health Care Financing Administration for regulating it almost out of existence (see the September article).  But how can I complain when I had so much at stake for seven years and remained ignorant myself?

So, no anger, just gratitude  And this messianic urge to tell people with skin breakdown:  There are better seating solutions than you're being offered.  You have to demand them.  You have to convince yourself first, then your doctor and therapist.  Refer them to the September issue, or to Tamarack Habilitation Technologies in St. Paul (651/644-9950).  If Medicare balks at paying, put some heat on Thomas Hoyer's office at HCFA (410/786-5661).

Had I not been lucky enough to have this job, I might never have known I had alternatives.  Now I know, and so do you.  If pressure sores are wreaking havoc on your autobiography, then change the story.

Reprinted with permission from New Mobility.


New Mobility
Volume 9, Issue 62, p. 10
November 1998

Letter to the Editor:

Orthotic Seating

Some time back [editor Barry Corbet] made a trip to Minnesota to be fitted for a custom orthotic cushion.  I am sure that there are hundreds of crips out there like myself who are sitting on pins and needles waiting for him to comment on the cushion.  So how about it?  Did it work?  Was it worth the trip?  Was it worth the money? -- John Fulton Gardnerville, Nevada

EDITOR:  Yes, yes and yes!

Reprinted with permission from New Mobility.


Star Tribune
Wednesday, August 17, 1994

A new, upright outlook
Specially tailored device lets man with no lower body sit up in comfort

By Gordon Slovut
Star Tribune Staff Writer

Dan Mykkanen slipped his stub of a body into what he describes as a "bucket" Tuesday, swung into a wheelchair and said goodbye to the nurses and physical therapists at University of Minnesota Hospital.

Mykkanen, 44, who lost his lower body when it was amputated at the hip and pelvis nine years ago, was heading home for Nisswa, Minn., sitting upright comfortably for the first time in years—and hoping to get back to fishing and the blackjack tables at Grand Casino Mille Lacs.

Before he got the specially tailored device, Mykkanen conducted his affairs (including playing blackjack and the slot machines) while lying flat on his belly or back on a wheeled cart.

"This should give him a new outlook on life," said Dr. Dennis Dykstra, chief of physical medicine and rehabilitation at the university.

Mykkanen had to give up his other main form of recreation, drinking beer, 2½  years ago after his aorta developed a life-threatening leak.

"I understand that beer and a busted aorta don't work together very well," he said.

His lower body was paralyzed when a pickup truck carrying him and two friends crashed into a utility pole in January 1976.  His friends were unhurt.  Mykkanen's health has been deteriorating since then as the result of his inability to move about freely.  In the early 1980s, he began developing severe bed sores on  his buttocks and legs.  Because he had no sensation in his lower body, he tried to pare away the sores with his hunting knife.  That didn't work.

By 1985 the infection  had spread to his pelvis, and surgeons at University Hospital amputated his lower body—pelvis, hips and legs.

He was back in the hospital in March, this time because the infection had spread to bones in his lower spine.  After removing several infected bones and clearing up extensive infections, university doctors referred Mykkanen for therapy to Dykstra's department of physical medicine and rehabilitation.

Mykkanen strengthened his body with daily exercises and weight lifting.  Therapists and J. Martin Carlson, a former aeronautical engineer who now runs a small high-tech prosthetics firm, fitted him with the two-piece prosthetic device he calls a bucket.

The piece next to his body is mostly fabric.  It holds his boneless lower body, which is mostly fluid, including the contents of his lower abdomen.

Once he is in the liner, he swings himself into a hard plastic base.  His body is kept upright in the device, with the top of the liner suspended from the top of the hard shell.

Carlson, founder and president of Tamarack Habilitation Technologies, Inc. in St. Paul and a former prosthetics specialist at Gillette Children's Hospital in St. Paul, said the device he created and designed isn't cheap:  "We put a lot of hours into it."

He said he probably will bill the university between $7,000 and $10,000.

Carlson said it is unusual in today's health care climate for a hospital to do something other than "go with a low-cost, off-the-shelf model available."

He said the result is sometimes a device that doesn't fit the patient precisely, creating a risk of bed sores such as those that have troubled Mykkanen for years.

Because he is disabled, Mykkanen's health care is covered by Medicare, which pays hospitals a set fee based on the patient's diagnosis, not on the actual treatment.  Dykstra said he expects the hospital will have to "eat part of the cost of treating this patient."

"I think it is very admirable that the University Hospital is willing to do that," he said.  "Some hospitals won't do that in a case like this.  They suggest that a patient go elsewhere."

Dykstra said the upright position should help Mykkanen's general health as well as his morale.  "We think it will be better for his lungs," he said.

"How is he doing?" Dykstra said.  "I think he is doing outstanding."

Mykkanen said he is not, however, outstanding at the gambling tables.

"I think I lose more often than I win," he said.  "But that's the way it is supposed to be at those places, isn't it?"

Copyright 1998 Star Tribune.  Republished here with the permission of the Star Tribune, Minneapolis-St. Paul.  No further republication or redistribution permitted without the express written consent of the Star Tribune.



(Please also read the comments by Tamarack printed immediately after this article.  Tamarack feels that a few statements in the article need clarification.)

Star Tribune
Tuesday, August 27, 1996

TODAY'S FOCUS:
The disabled and Medicare

When Angela Lodmell, paralyzed since 10, needed a seating device so she could live at home with her daughter, Medicare got in the way.  Advocates of the disabled say that in Medicare's efforts to reduce fraud, its list of approved devices does not include some innovations that provide more freedom and better health for the disabled.

Amputee finds Medicare to be quite an obstacle

By Glenn Howatt
Star Tribune Staff Writer

Angela Lodmell, paralyzed from the waist down since she was in a car accident at age 10, has always had plenty of frustrations with Medicare.

Like the majority of disabled people in this country, she depends on the government for health care, and she has learned how to negotiate Medicare's paperwork and bureaucratic hassles just as she has learned to negotiate the curbs and doorways she encounters every day in her wheelchair.

But last fall, after doctors were forced to amputate her paralyzed legs to stop recurring, life-threatening infections, Medicare became more than an obstacle, it became a trap.  Lodmell, 29, faced a labyrinth of rules and regulations that prevented Medicare from paying for a $10,000 seating device that would allow her to go home to Pinewood, Minn., and her 7-year-old daughter, drive a car, use a wheelchair, go to school or get a job.

"I wish I could just win the lottery and pay for it all myself. Medicare has been pulling my strings for too long."
--Angela Lodmell

Instead, she faced a life confined to a nursing home, a vastly more expensive proposition for government-funded health programs.

"I wish I could just win the lottery and pay for it all myself," she said.  "Medicare has been pulling my strings for too long."

She was lucky.  Tamarack Habilitation Technologies, of St. Paul, the maker of the seating device, agreed to provide it even though it was concerned that Medicare would pay only $1,600 of the cost—the amount that the agency pays for ordinary wheel-chair pads.

Tamarack's seating system, however, is much more expensive because it is handmade, custom fitted to Lodmell's body, and designed to prevent the infections that resulted in her amputations.

A common problem?
Lodmell's situation is all too common, advocates for the disabled say.  Because Medicare's reimbursement policies have failed to keep pace with technology, new products for the disabled, even those that could save Medicare money in the long run, often are ineligible.

Cases such as Lodmell's infuriate professionals, who say the issue of coverage for people like her is just as important as the need to save Medicare's hospital trust fund from bankruptcy and the effort to make certain that Medicare doesn't pay more than it should to the makers of health care products.

"In the last 15 years the number of options available to the wheelchair rider has exploded, but there has not been a corollary activity going on in Medicare regulations to acknowledge the options that are better," said Jean Minkle, a former rehabilitation therapist and now an industry consultant.

"No one blinks an eye at the custom-made artificial leg that has been around for years," she said.  But denying payment for some of the devices available today would be like denying payment for prostheses when they were first developed, she said.  Medicare would have said, "'Here are a pair of crutches, now walk around,'" Minkle said.  "That is the same kind of answer Medicare is giving the wheelchair user today."

"There has been an enormous amount of innovation. There are very real disputes in the industry as to what devices are truly effective."
--Thomas Hoyer, Health Care Financing Agency official

Medicare officials acknowledge that the agency has not kept pace in accommodating technological developments, but also said there are good reasons to be cautious.  The agency spends $3 billion a year on equipment for the disabled, but it also must protect itself from paying improper or excessive claims.

"There has been an enormous amount of innovation," said Thomas Hoyer, director of coverage and eligibility policy for Medicare's administrative agency, the Health Care Financing Agency (HCFA).  "There are very real disputes in the industry as to what devices are truly effective.  Imagine the public relations position we would be in if manufacturers were benefiting improperly" by inflated or fraudulent billing.

Many of the new technologies give the disabled more freedom and more lifestyle options.  Some can also prevent the physical deterioration that is common to the disabled.

Fragile bodies
Lodmell knows all too well how fragile a paraplegic body can be.  After 19 years of wheelchair use, she has suffered the consequences of infections from pressure sores, which are a constant danger to those in wheelchairs.  As a result, she lost both her legs and half her pelvis to amputations.

Lodmell's will and determination have helped her to survive paralysis and the loss of her legs, but  the inner voice that drives her also can turn against her.

Doctors had warned that she needed to slow down, even if that meant spending long periods doing little.

"It's my own fault," she said about the loss of her legs.  "If I hadn't done the gardening or worked or done all the other things and instead if I had rested for a year like they said, then maybe this wouldn't have happened."

She still has her bright eyes, a shy smile, a strong pair of arms and her torso.  But with the lower half of her body gone, her doctors were afraid to let her use standard wheelchair equipment.  The next pressure sore could be fatal.

Without a chair, Lodmell's only method of transportation was a motorized table on wheels, too large for her home or most places other than health care institutions.

Marty Carlson, founder and president of Tamarack, was so moved by Lodmell's situation that he risked taking a $9,000 loss on the seating system.

"I have always been independent," Lodmell said.  "Until I met Marty [Carlson] and saw the slides of this system, I didn't know what I was going to do."

One month after Lodmell returned to her home, thanks to the Tamarack system, her only physical limitation was not being able to reach down from her wheelchair to her daughter.  But she could easily solve that problem by unstrapping herself and getting down with her daughter on the floor.

"This is one of those cases that dramatically illustrates what is wrong with the system," said Carlson.

His company had developed the seating system, and Medicare had been paying for it.  Altogether, Tamarack  had fitted nearly 50 patients with the seating system.  But in 1995 it stopped making it because Medicare changed its classification to that of a wheelchair pad, as part of the agency's systemwide revamping of its payment approval system to cut down on fraud.

Fighting fraud
Medicare had been criticized after government auditors discovered that its procedures for paying for supplies was so lax that some companies were routinely charging excessive prices or double-billing.

In one extreme example, the auditors discovered that a company had billed Medicare for exaggerated amounts of surgical tape for its patients—enough to wrap each one in 60 to 240 yards of tape each day for 15 months.

Carlson applauds the antifraud effort, but says that in the process that HCFA had slipped backward in approving technological advances for medical necessities.

HCFA's Hoyer said he was not familiar with the specifics of Carlson's technology.  He said HCFA has standardized many of the rules on what—and how much—it will reimburse patients for medical expenditures.  He also says the agency is working with industry representatives to address problems generated by those changes.

"We are doing the best job we can, but we are clearly hampered in our ability to keep track of it all.  I would be going too far to say we have all of our codes and prices right."

Carlson's seating system essentially a plastic bucket with a precisely fitted body sling—distributes the patient's weight evenly over many points, rather than on a single spot as most wheelchairs do.  Pressure sores have less chance to develop, and the patient can still use a wheelchair.  The system can even be adapted to allow patients to drive cars—or, in Lodmell's case, a snowmobile so she could fetch the mail during the winter.

A government agency has estimated that the nationwide cost of treating pressure sores for wheelchair users and bedridden patients runs $1.4 billion annually.  Treating a severe case can cost between $45,000 and $60,000, but most pressure sores are preventable.

"It's my own fault.  If I hadn't done the gardening or worked or done all the other things and instead if I had rested for a year like they said, then maybe this wouldn't have happened."
-- Angela Lodmell

Carlson's system is expensive.  Most of the $5,000 to $10,000 price is labor costs to custom-fit the seating device to the patient.

But he says Medicare would save money because proper wheelchair seating would avoid the expense of treating pressure sores.

"You don't have to be a liberal socially or politically to understand how unwise this policy is in dollars and in human suffering," he said.

Carlson said that while his company would benefit financially if it could make the seating device again, that's not his main goal.  Most of his company's revenues come from such orthotic and prosthetic devices as braces and artificial limbs.

"It's more important to get this technology out there," he said.

Small, needy markets
Minkle said Tamarack is typical of providers who have invented effective, specialized equipment for the disabled.

"In all those cases the target market is very needy but very small," Minkle said.  That makes the overall problem much more difficult for the industry to document and for government administrators to see, she said.

In essence, she pointed out, Medicare has not yet adapted to the medical philosophy espoused by managed care:  preventing and solving medical problems before they become serious.

"HCFA is still in the traditional health service delivery mode, which is 'We'll deal with the crisis as it comes.'  Some of that might change as more recipients are moved to managed care, where one organization would be motivated to lower overall costs for each patient," Minkle said.

In the end, Medicare paid 90 percent of the cost of Lodmell's seating system.  Carlson discovered that because she had lost both legs to amputations, he could bill for it as a prosthetic device for an amputee rather than a wheelchair pad.

The irony is not lost on him.  It was the consequences of the pressure sores—Lodmell's amputations—that made the reimbursement possible.  Any paralyzed person who still has legs might not be so fortunate.

Copyright 1998 Star Tribune.  Republished here with the permission of the Star Tribune, Minneapolis-St. Paul.  No further republication or redistribution permitted without the express written consent of the Star Tribune.


Tamarack would like to clarify a few points made in the above article:

Ms. Lodmell had recurring pressure ulcers with associated infections.  As a result, she underwent a series of surgeries, including muscle-flap closures, the amputation of one leg in 1989, and the amputation of the other leg and part of her pelvis in 1995.  The cost of treating a single pressure sore can be $45,000 to $60,000.  Most patients referred to Tamarack for seating have already had multiple pressure sores, at a substantially  higher total cost.

Tamarack has made around 50 seating systems for people with spinal cord injury to help heal or avoid pressure ulcers.  Those seating systems cost $4,500 to $6,500.  Tamarack has only made 3 systems like Ms. Lodmell's, which are much more complicated.  Since people often die from infections associated with pressure ulcers before reaching the double amputation stage, the need for these systems is rare. Medicare's "allowable" amount for a custom molded sitting support, including seat bottom and back, is $1,600.  The amount Medicare will pay for wheelchair pads is much less.

Tamarack's technology is custom-designed and fabricated, so the market Tamarack can serve is small.  However, the number of people with spinal cord injury and pressure ulcer problems is not small.  Tamarack's desire is that this technology will be taught and spread among orthotic facilities, so that the potential savings in dollars and suffering would be available throughout the nation.  Wider usage would accelerate improvements and refinements in the technology.  Unfortunately, Medicare's reimbursement policy has stifled that process.

The Medicare system has reserved a number of "undesignated" orthotic and prosthetic codes specifically for new or unusual designs.  Use of those classification codes requires some extra documentation by the orthotist/prosthetist, and some extra attention to claims processing by the Medicare carrier.  However, Medicare officials have taken special action to reclassify sitting support orthoses to eliminate the "undesignated" coding alternative which is generally available to other technologies.

Mr. Hoyer should already be familiar with the specifics of custom orthotic seating, although he is quoted saying the opposite.  Copies of pertinent correspondence to Mr Hoyer's office are available.   You can contact him with your concerns at:

Thomas E. Hoyer, Director
Chronic Care Purchasing Policy Group
HCFA National Headquarters
7500 Security Blvd.
Baltimore, MD 21244
410/786-5661
THoyer@HCFA.gov.



Journal of Prosthetics and Orthotics
Volume 10, Number 4, pp. 110-115
Fall 1998

A Flexible, Air-Permeable Socket Prosthesis for Bilateral Hip Disarticulation and Hemicorporectomy Amputees

J. Martin Carlson, CPO
Susan L. Wood, RTPO

Reprint permission pending



O & P Business World
Volume 1, Number 2, p. 18
Spring 1998

Orthotics Team Teaches, Learns in Latin America

Marty Carlson and Pilar from the IRI, Santiago, Chile, during the closing session of the course.
 

If you are teaching prosthetics and orthotics, you would certainly appreciate students who work hard in class and workshops, are willing to travel long distances to attend your program, and stay until the last question is asked and answered.

This has been the rewarding experience of J. Martin Carlson, C.P.O., Sherry Rovig and other practitioners and technicians at Tamarack Habilitation Technologies Inc., St. Paul, Minnesota USA.  From September through December 1997, they made several of what Carlson describes as "teaching and learning" trips.  Joe Bieganek and Marty Carlson conducted a five-day workshop September 29-October 3 at the Instituto de Rehabilitacion Infantil (IRI) in Santiago, Chile.  They demonstrated and coached two teams, consisting of orthotists and therapists, through the process of designing, fabricating, and fitting plastic shell type Sitting Support Orthoses for local children.

The workshop was part of a week-long schedule of activities celebrating the 50th anniversary of the founding of the Sociedad Por Ayuda del Nino Lisiado.  This organization was founded in 1947 to aid children disabled by polio--a scourge of that era.  Later the Society extended its program to also help children disabled by cerebral palsy, amputations, congenital deformations or limb loss, and other conditions.  Other organizations which have aided the work of the Sociedad Por Ayuda del Nino Lisiado are Deutsche Welthungerhilfe, Diakonisches Werk, Pan Para el Mundo, and Misereor y la Fundacion Euronaid de Holanda.  The Chilean community also has responded through the Teleton campaign.

Scenes from the seating course in El Salvador.

From Chile, Carlson went directly to Montevideo, Uruguay to participate in a program of lectures on biomechanics and orthopedic design October 4 and 6, organized by the Sociedad Uruguaya de Medicos Fisiatras and also sponsored by other health care organizations.

Then, in December, Rovig and Carlson conducted a five-day pediatric seating workshop in El Salvador.  Rovig and Carlson led six teams through the process of fabricating and fitting molded plastic shell type sitting supports at an O & P training facility of Don Bosco University in San Salvador.  "By the end of the week, seven severely impaired children from the rehabilitation institute next door to the training center had received completed seats and about 35 professionals and students had received training," reports Carlson.

In partnership with the GTZ (Deutsche Gesellschraft fur Technische Zusammenarbeit), the University Don Bosco (UDB) began offering its Orthopedic Technology program in January 1996 with 25 students from local organizations.  The GTZ is an autonomous German organization aiding the planning and technical implementation of projects in developing nations under guidelines established by the German Federal Ministry of Economic Cooperation (BMZ).

Unique in Central America, the three-year program trains orthopedic technologists to serve the disabled, however their disability was caused--accidents, illness, or war.  The institution moved to its new headquarters in Soyapango, east of the capital city of San Salvador in 1992, although the O & P training center remains in San Salvador.  Besides orthopedic technology, the university offers studies in mechanical, electrical, electronic, biomedical, and industrial engineering, as well as humanistic studies such as sciences of education and communication.  By January 1999, the UDB plans to have student residences and technical facilities for 25 Salvadoran and international students annually.

Joe Bieganek, Pilar, and others at the IRI, Santiago, Chile.

Immediately after the seating course, Carlson attended the First Annual Salvadoran Rehabilitation Congress, December 5-6, and gave a paper on some aspects of lower-limb biomechanics in children with cerebral palsy.  Other presenters included Dr. Miguel Gomez, Colombia; Ing. Heinz Trebbin, Germany; July Chan Jimenez, Costa Rica; Dra. Graciela Giachino, El Salvador; Dra. Sonia Maza de Rivera, El Salvador; Dr. Eduardo Mena Guerrero, El Salvador; Dr. Jose Antonio Velasquez, El Salvador; and Dr. Pedro Banchon, Ecuador.

Topics covered included technical advances in orthotics and prosthetics; geriatric rehabilitation; disabled sports; congenital disabilities; and a round table discussion of orthopedic aids.

Says Carlson, "It was a wonderful experience.  The country has obviously returned to peace, and everyone was warm, friendly and gracious."

Reprinted with permission from O & P Business World