11 Voices, 34 Wheels

If you are a mobility equipment provider, you undoubtedly work in one of the most dynamic segments of home health care. Changing legislation, vague policies and insufficient reimbursement have become the norm rather than the exception. But you keep doing what you do for one reason: your customers.

Your mobility customers depend on you for a lot more than equipment. They want your advice and need your expertise as if their lives depend on it — and they do. Caroline Signore, a doctor and researcher at the National Institutes of Health in Bethesda, Md., says the wear and tear on her power wheelchair is evidence of her dependence on it. For Signore and others, their “wheels” are a ticket to independence that home medical equipment providers make possible when they are knowledgeable, attentive and respectful.

As you read through their comments, remember that each of these people is your customer. Some have high-profile lives that make them representatives for people with disabilities. You may recognize several as working within HME. Other names will not be as familiar.

But what they have in common — the need for a wheelchair — is exactly what should not bond them together. The use of a wheelchair, these users say, should not define their abilities or interests any more than the color of their hair.

John Collins, a judge in Glenwood Springs, Colo., and a paraplegic since 1994, says he actually forgets he is in a wheelchair. “My normal business and my normal life don’t have anything to do with my disability,” he says.

Most of these individuals are not Medicare or Medicaid patients but are covered by private insurance. And they represent a growing population of wheelchcair users who are active, educated and willing to spend disposable income on the equipment and accessories that will help them do as they please.

Read on for more thoughts from these mobility customers on this industry — and what they think about you.

Seller Beware: Educated Customer Alert

Caroline Signore and Nash

Occupation: Post-doctoral fellow, Division of Epidemiology, Statistics, and Prevention Research, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Md.

Diagnosis: C-6-7 quadriplegic

Years in a Wheelchair: 9

“If I had not had the knowledge and the ability to dissect what was going on, I’m sure I would have ended up with all kinds of stuff that was not right for me.”

Home medical equipment providers are like the little girl with the curl: When they’re good, they’re very very good, and when they’re bad, they’re horrid. This has been the experience of Caroline Signore.

Signore, who commutes to her office at the National Institutes of Health with her assistance dog Nash, expects a lot of her equipment — and of those who sell and service it.

Injured in a car crash, Signore received her first power chair by using the proceeds from a $100,000 auto insurance policy that was not line-item dedicated. Three years later, after experiencing seating problems, she was prescribed a new power chair. She chose a solo provider and, she says, her problems began.

“I was impressed with the provider early on because he seemed to spend a lot of time trying to understand my needs,” she says.

But Signore began to feel the provider did not have the expertise she expected, giving her components that did not work together and trying to sell her high-priced items that she didn’t need. “Suffice it to say that it took two years to get a chair that was in working order,” she says.

After that experience, Signore went to a larger rehab company that had the knowledge but not the business skills. “They were knowledgeable, but they were poor businessmen … missing appointments, forgetting to order parts and bringing the wrong parts,” she says.

Today, Signore works with a service provider that she says has been “outstanding.” The company responds quickly when she needs repairs, and she says when she needs a new power chair, she will ask for their recommendation of a quality provider first.

What the Industry Is Doing Right (and Wrong)

David Williams with Fran

Occupation: HME consultant, writer, Akron, Ohio

Diagnosis: Chronic, progressive multiple sclerosis

Years in a Wheelchair: 27; 20 years in a manual wheelchair and the last seven in a power chair

“The days of insurance paying for everything are gone, and now there are going to be more cash transactions, which will be good for providers’ businesses.”

David Williams, who spent 13 years as director of government relations for Invacare Corp., knows the HME industry like the back of his hand. He also knows the importance of the provider-customer relationship, which he believes should involve “not only selling products but valuing the relationship and following up when needs arise.”

When asked about the industry’s current strengths and weaknesses, Williams’ answer addresses where he thinks providers could improve. First and foremost, he says, providers should realize the need for mobility equipment is dynamic. “Too many providers who sell mobility equipment don’t acknowledge this, and they look at the process as static … instead of making a significant effort to determine what needs to be looked at down the line.”

Second, Williams believes manufacturer exclusivity limits choices for users, which in turn limits providers. “They need to be flexible so they can provide a complete unit because it is not just a wheelchair, it is a system,” he says.

His third point encompasses the work of the entire industry. Williams wishes there was more universality in product specifications so parts could be interchanged to build the best system for the user’s needs.

Williams also is happy to highlight HME’s bright spots. The emphasis and acceptance of professional training pleases him. He notes that communication among providers, customers and caregivers and other members of the treatment team has improved dramatically over the years.

Finally, he applauds the industry for involving consumers in the decision-making process by offering them choices, and for recognizing that this population has disposable income and is willing to use it.

“This is a constituency with disposable income, and as insurance gets worse, survival is going to depend upon consumers being willing to reach into their own pockets,” Williams says.

Empowering Consumers

Marilyn Hamilton

Occupation: Founder, Quickie; Vice President, global strategic planning, Sunrise Medical, Fresno, Calif.

Diagnosis: T-11-12 paraplegic

Years in a Wheelchair: 27

“Funding and the willingness to learn and fight for your rights will determine whether someone receives adequate health care. Consumers who are willing to do whatever it takes, who are vigilant and do not give up generally find solutions.”

Marilyn Hamilton is a champion among wheelchair users.

From the moment the first Quickie wheelchair rolled out of a garage in Fresno, Calif., Hamilton has believed that the right equipment can empower those with disabilities and enhance their lives. But, she says, there still must be integral changes in how the United States provides health care.

“Adequate funding for assistive technology that will allow consumers to participate in an active, healthy and productive lifestyle is very much needed,” Hamilton says.

“For example, there needs to be better funding for power products and environmental controls that provide independence for consumers to function. Additionally, the inadequate funding for K-5 wheelchairs by some sources gives consumers the lowest cost option, [causing secondary conditions] instead of what would allow them to function in society.”

Prevention through rehabilitation services, products and education is key to achieving positive clinical and quality-of-life outcomes for people with physical disabilities, she stresses.

“Following an injury, people need adequate rehab hospital time, therapy and services to become educated on how they can care for themselves, thus preventing additional health care issues,” she says. “Likewise, the use of appropriate cushions, beds, overlays and wound care services will prevent pressure sores before they occur or in early stages of occurrence.”

The increase of consumers’ knowledge regarding their own care is a trend to which the HME and rehab industry must pay close attention.

“Consumers are becoming more knowledgeable of what they are entitled to from their health care policies, and providers must include consumers in their health care decisions through better education of what is required to obtain equipment and services,” Hamilton adds.

“Providers should listen to consumers’ needs and wants, fit them well and teach them how technology can enhance their lives. Making them knowledgeable will enable them to advocate for their own rights.”

Getting Home Care Out of the House

David Jayne

Occupation: Founder, National Coalition to Amend the Medicare Homebound Restriction (NCAHB), Atlanta, and RespiteMatch.com

Diagnosis: Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease)

Years in a wheelchair: 15

“I am not advocating government handouts and perceived entitlement rights; instead, I challenge the government to use forethought and provide opportunities for self-improvement.”

David Jayne breathes through a machine and cannot move. And he made national headlines in late 2000 when a newspaper article described how he left his home near Atlanta for a University of Georgia football game. In doing so, he lost his home health benefits because such trips violated Medicare’s definition of “homebound.”

Since then, Jayne has fought hard for revision of the restriction. As the law stands, he told one reporter at the time, an individual is allowed to go to the doctor, church and adult day care; otherwise “one is forced to live under house arrest or be a cheat and liar.”

Due to his advocacy — an Internet petition posted by NCAHB garnered more than 14,000 signatures — a two-year demonstration project to clarify the definition of homebound was added to the Medicare Modernization Act. Yet, Jayne is not optimistic about the outcome.

“Our fears are being realized,” he writes via e-mail. “Because home health agencies use the homebound restriction as a budget tool for expensive care patients like me, they have not encouraged participation of Medicare patients. Rather, they are signing up dual-eligible Medicaid/Medicare beneficiaries due to better reimbursements.”

Jayne adds that CMS has argued that beneficiaries will “come out of the woodwork” once the demonstration is final. He says this and beneficiary dual-eligibility will render the effort useless. “I am concerned the cost-shifting of dual-eligible beneficiaries will skew the results, and CMS will determine the homebound restriction will remain as currently written,” he says.

Jayne also says the country’s current health care structure and Social Security funding encourage people with disabilities to remain ever-dependent on government assistance. “Assistive technology is critical for improved qualify of life,” he stresses. “I would be an unproductive vegetable without it. Because of assistive technology, I am becoming a productive, tax paying citizen.”

Early this year, Jayne created an international e-commerce service (www.RespiteMatch.com) that pairs caregivers with patients. “I am extremely fortunate to possess the capabilities to make this a reality when many beneficiaries of the Social Security Administration are challenged to get through the day, but we should all have the opportunity to live life to the fullest,” he says.

Great Equipment Equals Great Results

John Collins and Claxter

Occupation: Municipal Court judge, prosecutor, and Eagle County district attorney, Glenwood Springs, Co.

Diagnosis: T-12 paraplegic

Years in a Wheelchair: 10

“If I am going to be in a wheelchair for the next 40 years, it is going to be the best.”

John Collins’ experience has shown him that having the right equipment is integral to independence and health. Collins was using a rigid frame wheelchair he had owned for seven years and was not interested in acquiring a newer model. He liked the performance of the wheelchair and believed the fit was appropriate.

Fast-forward to a serendipitous meeting that led to his purchase of a new chair. Performance aside, he says, the difference in having a properly fitted chair compared to being in one that is not is, well, amazing. “Getting the right wheelchair is more exciting than getting a new car,” he says.

Collins says that having an improperly fitted wheelchair can have detrimental effects, like the spinal curvature he endured. Now that he has been well fitted, his posture has improved and his pain has subsided.

“You have to have somebody fit you in this equipment; it is not only a matter of comfort or wear and tear on your body but it is a matter of keeping you out of the hospital,” he adds.

“You don’t know how you are supposed to feel, but as soon as you get into one that actually fits, you know what you were missing. I am sitting in this one wondering how I ever managed to be in my old one.”

Keeping Customers Loyal

Josh Anderson

Occupation: Vice President of Marketing, TiLite, Kennewick, Wash.

Diagnosis: C-5-6 quadriplegic

Years in a Wheelchair: 19

“[Rehab] is a tough end of the market right now, but it’s imperative for consumers like me that those good providers stay with it because they are an integral step to getting the proper equipment into the hands of the people who need it.”

Josh Anderson knows intimately how important it is to have a good rehab provider. Since a diving accident in 1986, he has used the same provider, even though he now lives in Richland, Wash., and his provider is located in Miami.

“I’ve continued to use them because they really recognize my needs and are very attentive to getting me the equipment and supplies I need,” he says.

Because he understands the benefits of such a relationship, he believes the implementation of competitive bidding for HME and rehab products would be extremely detrimental. “I am not a fan of competitive bidding because I think it’s going to lure a lot of companies into the industry that are not willing to invest the time and resources to be fully trained on rehab equipment,” Anderson explains.

He is quick to point out that it is “not just about the equipment.” The relationship with his provider adds a useful view of his overall condition. “They’re able to make more intuitive suggestions because they have some knowledge of my history,” Anderson says.

Thanks for Not Getting The Door

Darren Jernigan

Occupation: Director of government affairs, Permobil, Lebanon, Tenn.

Diagnosis: C-5-6

Years in a Wheelchair: 14

“I can deal with misperceptions when a person’s heart is good or the motive is right. But sometimes, independence is hard to come by, and when you do things like open a door for somebody without asking them, you could be taking away what little independence they do have.”

Darren Jernigan, who lobbies for legislation to improve the lives of those with physical disabilities, also lobbies for people to put aside perceptions that a person sitting in a wheelchair is poor, uneducated and worthy of pity. “You don’t diminish someone because he has a disability,” he says.

Jernigan believes it will take changes in legislation and personal perceptions to fully integrate people with physical disabilities. For example, he points out, “Social Security is a very dependent system; its design keeps you from working in order to keep your insurance.”

Likewise, he says, the cuts occurring at state Medicaid levels — his home state of Tennessee recently dropped 200,000 people from its rolls — are not only irrational but harmful. “[Medicaid programs] are attempting to reduce health care costs by not giving people health care,” he says. “I don’t understand that.”

Washington Woes: Missed Opportunities for Change

Rep. Jim Langevin

Occupation: Democratic Representative, U.S. Congress, Warwick, R.I., and Washington D.C.

Diagnosis: C-5-6 quadriplegic

Years in a Wheelchair: 25

“The people that are in this field are in it because they care about people and they know they are making a difference in the lives of many people with disabilities. That’s the real motivation for them; otherwise, I don’t know why anybody would want to put up with the frustrations of having to deal with CMS and government regulations.”

In 2001, U.S. Rep. Jim Langevin was the first quadriplegic elected to Congress. Now, his presence in Washington is a continual reminder to his fellow lawmakers that assistive technology can enable anyone to accomplish their goals and fulfill their dreams.

But Langevin wants to do more than serve as a reminder — he wants to change policies that restrict access to home medical equipment and increase opportunities for people with disabilities.

“I’ve been trying to get CMS to clarify its definition of home medical equipment, because it clearly was not the intent of Congress to make a determination that it only be limited to those people who need it in the home. The reason for the “in-the-home” definition was to make a distinction from the equipment that was used outside of a nursing home or a hospital,” he says.

Langevin believes CMS has missed opportunities to clarify this issue. “First, when CMS issued a national coverage determination in May of this year, it failed to recognize the beneficiaries’ need to act in their community,” he explains. “In response to that, I co-authored a letter to [HHS] Secretary Leavitt that was signed by a group of nearly 70 other [congressional] members asking CMS to modify the in-home restriction to the regulatory process.”

CMS ignored another opportunity in September when it issued its interim final rule on power mobility devices, Langevin says. “It was an opportunity for them to very easily clarify [the in-the-home restriction] within an existing rule they were commenting on. We may very well have to introduce legislation to fix the issue, which I’ve pledged to do.”

Additionally, Langevin stresses the need for people with disabilities to be active in their communities and that the United States has “some work to do” in this area.

“If we want to get people with disabilities out into the community contributing, working and becoming taxpayers as opposed to using tax dollars, we need to address transportation and medical coverage,” he stresses.

“Without these two things, it’s impossible — and it’s actually a disincentive — for people with disabilities to go and try to find gainful employment.

“There are people with great talents and skills who are stuck in their house as opposed to serving in Congress with me or being out there in the community realizing their potential and contributing their gifts and talents,” Langevin says.

“It’s a waste of talent and resources that we could use in the workforce.”

Why Being the Best and Achieving Success Is All in Your Head

Chris Waddell

Occupation: Sports agent/marketing consultant/motivational speaker, Park City, Utah

Diagnosis: T-10 paraplegic

Years in a Wheelchair: 17

“At this point, I wouldn’t trade the person I am right now for being able to walk.”

Chris Waddell has excelled in numerous endeavors. He is a superior athlete with 13 Paralympic medals, and is a world champion in alpine skiing and track and road racing. He is co-founder of a ski camp for people with disabilities. He has been a spokesperson for several corporations and organizations, including the 2002 Paralympic Winter Games.

But there is one thing he is not: He is not willing to give up the life he desires to obtain the medical supplies he needs to live.

Waddell says he remembers choosing to forego government insurance coverage, instead placing himself at the mercy of private insurance plans, a choice that has made him vigilant in retaining coverage — and amazed at the cost of medical supplies.

He has since found coverage through many sources, including the Screen Actors Guild following his appearance in a commercial. Recently, he met his lifetime maximum of $25,000 for medical supplies with his Blue Cross/Blue Shield provider. It took just three years and did not include the cost of purchasing a wheelchair. He currently receives insurance benefits from what he says is essentially “a pool for uninsurable people.”

Regardless of the effort he must make to maintain coverage, the results of his choice have been “phenomenal,” according to Waddell.

“I’ve probably traveled more since my accident than I did before, and I never would have been able to say I was the ‘best in the world’ before my accident,” he says, referring to being a finalist for the AAU Sullivan Award honoring U.S. amateur athletes. “I’ve met a lot of great people — I’ve even been able to shake presidents’ hands — and these are things I never would have done beforehand.

“I don’t know which direction my life would have taken had I not had my accident — that’s something I’ll never know.”

Racing Toward a Cure

Sam Schmidt

Occupation: Owner of Sam Schmidt Motorsports and founder of the Sam Schmidt Paralysis Foundation, Henderson, Nev.

Diagnosis: C-3-4 quadriplegic

Years in a Wheelchair: 5

“[A spinal cord injury] can be an opportunity for people that they didn’t have before — maybe they were stuck in a 9-to-5 job and couldn’t get out of the rut but they always wanted to do something different. Now they can.”

Like most little boys, Sam Schmidt grew up loving things that go vroom. Of course, when he played race car driver he didn’t have to pretend. His father was a drag racing competitor, and the family spent a lot of time at the racetrack. Today, he drives a power chair instead of a race car, but he is still going over 200 miles an hour each day.

After college, Schmidt worked in hospital administration but eventually ended up back in the family business. He bought a race car and began competing. While preparing for the Indy Racing League 2000 campaign, he was injured when his car hit a wall.

The Sam Schmidt Paralysis Foundation helps individuals overcome spinal cord injuries and other neurological disorders by funding scientific research, medical treatment, rehabilitation and technological advances. The foundation also sponsors “Racing to Recovery” events across the country to raise funds and awareness of spinal cord injuries.

Although the challenge of finding a cure for spinal cord injury is somewhat controversial, Schmidt is dedicated to the cause.

“There is never going to be a ‘magic pill’ — more and more information and available documentation suggests it will be a combined therapy of procedure and rehabilitation,” says Schmidt. “That said, just in the last five years, an increasing number of people are walking out of hospitals. There is a growing change in attitude at the neuroscience and rehabilitation level that [the quest for a cure] is worth a try.”

Schmidt is also dedicated to instilling a desire in people with spinal cord injuries to be part of society by encouraging those he meets to reach out and find something that motivates them. “If all you do is focus on the fact that your caregiver is an hour late this morning, that your insurance company hasn’t paid in two months and that you’re not getting the equipment you want, you will probably deteriorate very quickly,” he says.

Schmidt is looking into a new venture himself. “So many of us rode on Christopher Reeve’s coattails and allowed him to do all the lobbying and testifying in Washington,” says Schmidt. “While he was doing that, I was raising money and awareness and funding research, basically trying to stay as far away from politics as I could.

“Now I can’t. Every one of us has to do whatever we can to improve the options for people with disabilities.”

Why One-Size-Fits-All Doesn’t Work

Terri Rozaieski with Mike and Jaden

Occupation: Marketing Communications Manager, Pride Mobility Products Corp. Exeter, Pa.

Diagnosis: T-4-5 incomplete paraplegic

Years in a Wheelchair: 24

“I don’t know what the final version of DME competitive bidding will look like, but I just don’t want to see it become a cookie-cutter, one-product-fits-every-person process because there are no two injuries or two illnesses that are identical. To think that everything can be accomplished by taking the lowest bid is a ridiculous assumption to me.”

Terri Rozaieski is a wife, mom, worker and world traveler. She is also an expert when it comes to understanding the mobility equipment she needs to keep pace with her active lifestyle.

“Because I’ve used a wheelchair for so long, I’ve pretty much become my own expert. Because my injury is incomplete, I like to configure my equipment in a way that allows me to capitalize on my remaining ability,” she explains.

“For example, I use a much lower back on my chairs than a traditional T-4-5 paraplegic might use because it helps to maintain the degree of use that I have of my stomach and lower back muscles, enabling, to some degree, better trunk stability.”

Rozaieski orders her equipment over the Internet.

“In light of my own knowledge of my condition and many, many years of trial and error with products, and in light of the fact that through my job I am surrounded by some of the best rehab professionals in the industry whom I can ask for advice, I am able to choose and order even custom products on my own through various Internet providers,” she says.

She acknowledges this choice works well for her but the risks are high. “If you incorrectly order a manual wheelchair, it doesn’t matter if it was because of ignorance or because you didn’t understand a measurement — they don’t take those back,” she says.

Rozaieski hasn’t always ordered off the Internet, and she holds the provider-client relationship in high regard. For that reason she is a strong opponent of competitive bidding for mobility products.

“If a person doesn’t have options with regard to their equipment, it will be incredibly limiting,” she adds.