Ethical Legal

Is an Appropriate Wheelchair Becoming Out of Reach? e Part 2 Feature Editor: Kristi L. Kirschner, MD In the PM&R ethical legal column, Is an appropriate wheelchair becoming out of reach? [1], we introduced the evolving difficulties of getting high-quality, liberating wheelchairs to patients. To recap the issue: “Never before has the world been more replete with technological aids for people with disabilities: high-performing prosthetics; accessible computer devices; environmental control units; wheelchairs that can recline, stand, and climb curbs; and laptop-sized ventilators to name just a few devices. Such tools can make the difference between people with physical disabilities living in their own homes, participating in their communities, and being engaged in the workforce versus being confined to an institution or an inaccessible home and even to bed. Yet, just as Tantalus in Homer’s Odyssey stood immersed chest high in water beneath a tree laden with ripe fruit, he could neither quench his hunger nor thirst. As he would reach up to grasp or bend down to drink, the fruit and water would move just out of reach. So it is for many people with disabilities when they gaze at all the available technologies. Tantalizing, but unattainable. Nowhere is the situation more frustrating than in the domain of wheelchairs. Access to liberating mobility equipment is changing—and often not for the good” I invited 2 commentators for Part I: Jessica Pedersen, an occupational therapist, assistive technology professional (ATP), and Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)-certified seating and mobility specialist (or the second tier of RESNA certification) as well as Denise Harmon, a seasoned ATP to represent the perspective of the vendor. They responded to the questions I posed: 1. What do you believe are “best practice” policies for obtaining the appropriate wheelchair? How are the current rules and regulations of various payers facilitating and preventing this from happening? 2. What are the practical barriers (service and reimbursement wise) to ensuring access to best practice evaluations and quality equipment? 3. What are some potential solutions to the looming crisis? 4. How can we ensure that the people who depend on the equipment maintain access without undue burden, while fraud and abuse is prevented? In Part I, Jessica Pedersen emphasized the importance of having knowledgeable seating and positioning specialists involved in all stages of the procurement process. Ideally, a certified ATP and a seating and mobility specialist would be involved, and the manufacturer would work only with qualified suppliers who can support the end users. She noted that best practice seating and positioning clinics are closing due to the low reimbursement rates for the evaluation time of the therapist and high administrative burden from documentation requirements. In addition to recommending that insurers require and adequately reimburse for evaluations with seating specialists, she recommends streamlining the administrative paperwork, including utilization of electronic forms and signatures. Other potential solutions include exploring recycling equipment in good condition and advocating for policy changes that would enhance access to wheelchairs for those who need them to participate in the community. In her commentary, Denise Harmon underscored the importance of maintaining best practice wheelchair evaluations and emphasized the need to value not only the seating and PM&R

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Contributors: Judy Panko Reis, MA, MS Health Policy Team at Access Living of Chicago, Chicago, IL Disclosure: nothing to disclose Katrina Ballerini Health Policy Team at Access Living of Chicago, Chicago, IL Disclosure: nothing to disclose Sean O’Farrell, MBA Kellstadt Graduate School of Business, DePaul University, Chicago, IL Disclosure: nothing to disclose Christine Jasch, OTR/L Technology Center for the Environment, Computers and Communication at Rehabilitation Institute of Chicago, Chicago, IL Disclosure: nothing to disclose Michael Boninger, MD Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine; University of Pittsburgh Medical Center Rehabilitation Institute, Pittsburgh, PA Disclosure: nothing to disclose Marc Duerden, MD Durable Medical Equipment Medicare Administrative Contractors, Jurisdiction B (National Government Services) for Center for Medicare and Medicaid Services; Indiana University School of Medicine Disclosure: nothing to disclose The views and opinions expressed in this article are solely those of the author. These views and opinions do not represent the policy or opinions of either National Government Services or CMS.

Feature Editor: K.L.K. Departments of Medical Humanities and Bioethics, and Physical Medicine and Rehabilitation, Northwestern University Feinberg, School of Medicine, Chicago, IL. Address correspondence to: K.L.K.; e-mail: k-kirschner @northwestern.edu Disclosure: nothing to disclose

ª 2014 by the American Academy of Physical Medicine and Rehabilitation Vol. 6, 934-944, October 2014 http://dx.doi.org/10.1016/j.pmrj.2014.09.002

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technology specialists but also the centrality of the consumer-user’s perspective and preferences. Denise Harmon lays out the innumerable challenges that complex rehabilitation companies face in attempting to meet the consumer’s needs while complying with numerous disparate rules and regulation of the payers. Both Jessica Pedersen and Denise Harmon urge support of the pending legislation HR 492/ S.948 “Ensuring Access to Quality Complex Rehabilitation Technology Act” [2] as a step in the right direction. For Part II, we will hear from additional critical stakeholders: 

Judy Panko Reis, MA, MS, and Katrina Ballerini provide a consumer perspective on the issues, through interviews they conducted in their roles with the Health Policy Team at Access Living of Chicago.  Sean O’Farrell, MBA, Kellstadt Graduate School of Business, DePaul University, provides his analysis of the problems and potential business modeling solutions to the difficulties in maintaining access to quality wheelchairs and repairs.  Christine Jasch, an OTR/L who worked in the Technology Center for the Environment, Computers and Communication at Rehabilitation Institute of Chicago, from 1987-2014, shares her perspectives not only as a professional but as a patient who is now needing to use

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durable medical equipment (DME) because she is dealing with amyotrophic lateral sclerosis (ALS).  Michael Boninger, MD, professor and University of Pittsburgh Medical Center Endowed Chair in the Department of Physical Medicine and Rehabilitation (PM&R) at the University of Pittsburgh School of Medicine, shares his perspective as a rehabilitation physician who has spent the bulk of his professional research career studying assistive technology.  Marc Duerden, MD, also is a PM&R physician who shares with us his unique perspective as the medical director, of the Durable Medical Equipment Medicare Administrative Contractors (DME MAC), Jurisdiction B (National Government Services) for the Centers for Medicare and Medicaid Services (CMS), a role he has held since 2012. As always, I welcome your comments to this column or suggestions for future columns!

REFERENCES 1. Kirschner KL, Pedersen JJ, Harmon D. Is an appropriate wheelchair becoming out of reach? PM R 2014;6:643-649. 2. H.R. 942: Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013. Crowley J [D-NY14], Rep. Congressional Bill Tracker. Available at: http://dyn.realclearpolitics.com/congressional_bill_tracker/ bill/113/hr942. Accessed: September 22, 2014.

Commentary From Katrina Ballerini and Judy Panko Reis, MA, MS People with Disabilities Speak Out About Their DME It was an average day for Henry Williams, a middle-aged African American man who has been living for nearly 5 years with a mobility disability due to amputation of his left leg. While crossing the busy intersection of Clark and Chicago, his power scooter suddenly died in the middle of the street, and Williams was forced to ask strangers to push him to the sidewalk away from oncoming traffic. Before that incident, Williams considered the quality of his scooter to be “pretty good, but somewhat cheap.” The cheap quality of his scooter was confirmed in his mind the day that the battery on his scooter died in the middle of a congested intersection. Williams has been using DME for as long as he has been disabled and is dually eligible for Medicare and Medicaid. He relies on his scooter as his main form of transportation for activities of daily living at home and for community participation. Throughout Williams’s years of using DME, the quality of his equipment has been problematic. For instance, the battery on his scooter dies quickly, and he must be cautious that he is in places with accessible outlets for recharging. On stormy days, a wet steering tiller on the scooter impairs its function. Perhaps the most frustrating thing for Williams is his inability to get his DME provider to come to his home with replacement batteries even after offering to pay for them with out-of-pocket cash.

In a recent survey of 13 people with disabilities who use power scooters and wheelchairs, and who pay for their DME with a mix of private insurance, Medicaid, Medicare, and out-of-pocket funds, the Access Living Health Team found that Williams’s experience mirrored the unreliability and poor quality of DME reported by the other survey respondents. Similarly, the problems that Williams has faced in getting simple maintenance and replacement batteries for his scooter are typical of the challenges faced by the other survey participants and likely countless others nationwide. It is important to note that all those interviewed are connected in some way with the independent living movement. As disability advocates, they are knowledgeable about their disabilities, their equipment, their DME suppliers, their insurance, and their medical providers. Yet, even these savvy consumers have difficulty navigating the world of DME, and report trouble in finding customer serviceeoriented suppliers. Some consumers even described the process of managing the time-consuming and cumbersome authorizations processes as a “nightmare.” The result is that they are forced to use poor-quality equipment that frequently requires simple repairs, such as the replacement of a defective arm rest, tire, or battery, that render the equipment unsafe or unusable. For Carol Gill, PhD, a professor at the University of Illinois, and a subscriber of private insurance, these obstacles sometimes cost her work days because she has no way of

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transporting herself. “It’s absurd to require a doctor’s prescription just to replace a joystick or a wheel bearing for my wheelchair. What’s more frustrating,” Gill says, “after I’ve waited for the physician and insurance approval, I’m still unable to get my chair fixed because the supplier almost always has to order the new part, which adds another delay into the repair process. Finally, when all authorizations and replacement parts are secured, there is still the challenge of finding the supplier who is willing to come to my home to replace the armrest or joystick. With so many suppliers out of business, wheelchair users have no leverage to get urgent repair needs met.” Consumers commonly are provided loaner chairs during the arduous process of prior approval and repair. But safety becomes an added concern for these consumers, because the loaner equipment often is inappropriate in size and fitting for their body and/or disability, and can cause further injuries or medical complications. For example, one consumer mentioned that she needed a seatbelt and side guards to help keep her body upright, but the loaner chair she was given had neither, which resulted in discomfort and falls from her seat during the months she was required to use that chair. Another concern that all interviewees noted was the dearth of providers who are reliable and knowledgeable about making timely repairs. Our consumer group fears a weakening in the relationship between consumers and their providers as perceived financial concerns become more dominant. Knowledgeable consumers have learned that personal relationships with equipment providers and repair staff can be critical to getting something done. Increasingly, providers have adopted protocols that prevent customers from communicating directly with repair personnel. Instead, wheelchair users must negotiate repairs through a “middle person” who does not understand the specific mechanics of the equipment. As one consumer stated, “The quality of someone’s provider and equipment has more to do with the relationship the consumer has with them. If you have a healthy relationship with your provider, you are more likely to receive better quality care and service.” An important finding of our survey was that, regardless of the consumer’s insurance or payment method, the problems

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were the same, that is, unreliable equipment, delayed repairs, and poor customer service. This finding raises interesting questions about whether the problems with procurement and maintenance of quality DME are due solely to financial reimbursement or other factors. When asked for recommendations for improving the quality of DME, consumers unanimously stated the need to streamline the process for routine and simple repairs, and suggest that preauthorizations from health care providers be eliminated for routine repair and replacement of parts such as batteries, wheels and/or tires, armrests and/or tillers, or joysticks. They also agreed that suppliers need to retain in stock a larger pool of common parts and reliable loaner chairs to expedite the repair process and ensure the consumer’s safety and independence. Larry Voss, a power wheelchair user who also is a subscriber of private insurance and on the academic staff of the University of Illinois, recommended that “backup chairs” should be considered a “medical necessity” just like “backup ventilators” are paid for by the insurance as a “medical necessity.” Voss explains, “We should never be without our chairs; after all, without our chairs we are forced to stay in our beds, which puts us at risk for incurring more health issues, not to mention lost wages.” Although our study was based on a small convenience sample, the Health Team at Access Living believes that it underscores the cascade of problems that threaten the safety and independence of wheelchair and scooter users across the country. Unfortunately, it also illuminates another troubling concern. Because all the sampled consumers were highly knowledgeable about their disabilities and the nuances of their DME and were able to self-advocate for their DME and medical needs, the question arises of what happens to those who are not knowledgeable self-advocates; how many folks are forced into nursing homes, disempowered, or otherwise harmed because of their lack of access to reliable power mobility equipment? As Americans age, the need for appropriate and safe DME will increase if we hope to keep people functional and independent. Health care advocates and policymakers need to grasp the urgency of these concerns and partner with the disability community to implement necessary solutions.

Commentary From Sean O’Farrell, MBA Intelligent Return on Investment Decisions in DME I became aware of the challenges in the DME industry as an MBA student at DePaul University. As a graduate assistant, I was given the opportunity to assist one of the faculty members in supporting a committee formed to investigate innovative business models that may remedy inefficiencies within the DME supply chain. MBA programs such as

DePaul’s provide the training and skill set to analyze and assess situations by using a business mindset. Students are trained to deconstruct scenarios into causal determinants of operational and financial performance. I welcomed the opportunity to apply this knowledge to building a better business case for the provision of patient-centered DME for patients with complex rehabilitation. Shortly after beginning to gather data and ascend the steepest learning curve I have ever encountered, my initial excitement diminished. As I

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encountered complex health care industry and government regulations, the wide spectrum of health conditions, the idiosyncrasies of health service delivery, the ideological and political underpinnings of government’s role in health care, the variety of emerging technological advances in health care and manufacturing, the difficult decisions embodied in the contradictory incentives and trade-offs associated with the health care marketplace, and the maddeningly complicated billing procedures, I felt overwhelmed. The cumulative effect of this intimidating array of factors was often a feeling of powerlessness and frustration. From this jungle of factors, a few interrelated characteristics of the DME industry emerged as particularly perplexing (and potentially promising). The fragmented service delivery chain makes it difficult for any one player to strategically manage the entire process. This fragmentation, when combined with the traditional fee-for-service model, encourages many industry participants to focus on shortterm costs and health outcomes. Finally, the absence of meaningful data that crosses industry boundaries prevents the type of rigorous analysis needed to perform a thorough return on investment (ROI) analysis. Although the process for obtaining a power wheelchair or a piece of complex rehabilitation equipment is well documented in this series, it is worth revisiting in this context to illustrate the effects of fragmentation. DME manufacturers will generally use local suppliers who sell equipment to the end user. These suppliers will often employ ATPs who support the physician and/or occupational or physical therapist when evaluating and fitting a patient. The patient’s physician and therapist are ultimately responsible for ensuring that the equipment ordered is medically appropriate, yet they rely on the equipment-specific expertise possessed by the supplier’s employees to inform their decisions. The supplier often works with both manufacturers and insurance companies or Medicare to coordinate the ordering, billing, and delivery of the equipment. Once the equipment is successfully ordered, billed, reimbursed, and delivered, the patient takes ownership of the equipment and is generally responsible for routine maintenance. In the event of a malfunction or functional breakdown, the patient must determine which entity to call for repairs. These entities include manufacturer, which may be located in another country; the local equipment vendor; or the staff of the health care provider. Once a qualified (and willing) repair technician is identified, the mechanisms for approval, billing, and reimbursement are activated. Navigating this system may leave an individual without properly fitted functional equipment for months. Often, equipment falls into disrepair due to a lack of qualified routine preventative maintenance, and equipment is often replaced every 5 years or so. At the time of replacement, the patient usually retains the old equipment as a back-up chair or disposes of it through donation or sale in a secondary market.

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The process that a patient must endure when seeking repairs offended not only my sense of justice but also my sense of fiscal responsibility. Unlike other industries in which the trade-offs among the upfront costs of equipment, estimated useful life, projected maintenance costs, and quality are optimized to ensure that every dollar invested delivers as much value as possible, the DME industry does not. For instance, if a patient were lucky enough to have an insurance company willing to buy a high-end power wheelchair that costs $30,000, it was unlikely to actively support routine maintenance nor take an interest in recovery or refurbishment when the chair was no longer needed. This is mind boggling. The reasoning that underlies the current system emphasizes the importance of patient choice (which may entail periodically switching insurance companies or equipment providers) as well as the advanced level of customization needed for complex rehabilitation equipment and a patient’s deep personal connection to his or her chair, but this rationale does not eliminate the possibility of a better model. One alternative might be a model in which a third-party entity could take responsibility for the full life cycle of a chair. This entity would perform fleet management activities as a service to both patients and third-party payers. These services may include itemizing and monitoring equipment, maintaining an inventory of standard parts and loaner chairs, performing repairs, and refurbishing chairs. The refurbished chairs could be redeployed, harvested for parts, or added to the inventory of loaner chairs made available to patients who are waiting for customizations or repairs. By providing patients with timely repairs and access to a source for high quality loaner chairs, the entity could replace a patient’s desire to take ownership of his or her chair with the confidence that an appropriate chair and supportive maintenance and repair services will be available to the patient at all times. These activities also may be leveraged to improve the financial performance of third-party payers, such as Medicare and private insurance companies. It could lease the chairs to the third-party payers so that a patient retains the right to change payers, and insurers can more efficiently match their expenditures to the expenses incurred when providing equipment. I went to work with our DME group to try to develop a business plan and financial models to determine if this was really a feasible solution. In its simplest sense, building a business case for an alternative service delivery model is a straightforward task of documenting the current method of service delivery and its associated outcomes and costs, and then developing alternative service delivery strategies with projected outcomes and costs. At the conclusion of the exercise, decision makers should be empowered with information that allows them to declare: “we are currently achieving ‘a’ outcome for ‘c’ dollars and we could achieve ‘b’ outcome for ‘d’ dollars by implementing alternative no. 3. Let’s proceed with alternative no. 3.” One common criterion for comparing the efficiency of

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projects is ROI, often expressed as a simple ratio with the net benefit in the numerator and net cost in the denominator. For a ROI analysis, we first needed defined outcomes and reasonable estimates of costs. It soon became clear that the data we needed were not attainable. The 7 health outcomes that CMS used to demonstrate the success of the competitive bidding program were deaths, hospitalizations, emergency department visits, physician visits, admissions to skilled nursing facilities, the average number of days spent hospitalized in a month, and the average number of days in a skilled nursing facility in a month. I was simultaneously exposed to horrifying anecdotes such as individuals using shopping carts as wheelchairs while awaiting repairs or the delivery of proper equipment. I was struck by the disconnect between the outcome measurements that were readily available and those that patients reported affected their quality of life. Finding reasonable estimates of costs also proved elusive. Health care costs in the traditional sense refer to money spent on a health service and are often defined by reimbursement rates. In determining the cost of a given element of care, one could identify the appropriate billing codes and determine the reimbursement rate. As an example, the base of a Permobil C3000 Corpus G (Permobil Inc, Lebanon, TN) is advertised on the Permobil Web site for $6895 [1]. According to the CMS published 2013 DMEPOS (DME, Prosthetics, Orthotics and Supplies) fee schedule, the reimbursement rate in the state of Illinois under HCPCS code K0848 is $739.70 [2]. From a financial cost analysis perspective, these values in isolation are relatively meaningless; they are simply final prices paid. How much does it actually cost the manufacturer to produce this piece of equipment? The cost to actually produce and deliver the equipment represents an appropriate place to begin determining the true cost. Determining the true cost of a piece of equipment considers the cost to manufacture or the purchase price in the context of usage, repair costs, its useful life, the frequency of repairs, and disposal and replacement costs over the full life

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cycle of the equipment, a calculation not considered in competitive bidding. I applaud the goals of “lower costs and better care” as outlined in the Affordable Care Act [3]. In many areas, progress is being made toward achieving these goals. Unfortunately, DME and competitive bidding are not among those areas. The consequence of the improper outcome measurements and the lack of accurate cost data make a truly intelligent ROI decision impossible to estimate. The “return” portion of that equation needs to reflect the needs of the patients and the overall health outcomes achieved, and not the hospitalization-based proxies for successful treatment being measured for competitive bidding. The purchase cost as used in competitive bidding also is an inappropriate measurement for a piece of equipment that is intended to last many years and requires supportive services and maintenance. A proper measurement must include a financial appraisal of all costs related to the full life cycle of the equipment. This is the information needed to make sound decisions, decisions that will ultimately yield “lower costs and better care.” Competitive bidding may be an appropriate procurement policy for products such as commoditized medical supplies. Unfortunately, it is wholly inappropriate in the case of DME. Rather than viewing an item of DME as a one-time purchase of a physical good, it should be considered an investment in a mobility solution for a human being in need. CMS should remove DME for patients with complex rehabilitation from its competitive bidding program. CMS should further support innovative models that allow for integrated care and service delivery in DME through its Innovation Awards program.

REFERENCES 1. Permobil Web site. Available at: http://www.permobilus.com/ orderforms/usa/US-C300-Corpus-3G.pdf. Accessed July 16, 2014. 2. CMS.gov. Details for title: DME14_B. Available at: http://www.cms. gov/Medicare/Medicare-Fee-for-Service-Payment/DMEPOSFeeSched/ DMEPOS-Fee-Schedule-Items/DME14-B-List.html. Accessed September 15, 2014. 3. HHS.gov/HealthCare. Affordable Care Act. Available at: http://www.hhs. gov/healthcare/rights/law/index.html. Accessed September 15, 2014.

Commentary From Christine Jasch, OTR/L A Tale of Two Countries I sometimes feel like I have dual citizenship in 2 distinct countries: the country of care providers and the country of care recipients. As an occupational therapist and a spouse, I have long-standing citizenship in the country of care providers. Professionally, I specialize in assistive technology that can enhance independence, such as speech-generating devices (SGD), computer access, and electronic aids to daily living (EADL), which include items such as telephones, smart devices, televisions, lights, and automatic bed controls. I have evaluated and made recommendations about such

devices and aids for a wide variety of people with complex disabling conditions, including locked-in syndrome, highlevel spinal cord injury, and ALS. Enhancing communication and computer access can be liberating for those with more complex physical disabilities. The ability to connect to the outside world with some level of independence after losing control of so much can allow one to maintain a sense of self and purpose. The fact that technology is available to make it possible brings hope as well as frustration. The frustration stems from the fact that, although available, some technology is not affordable and, in the case of computer access, and EADL, not a covered benefit for

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Medicaid, Medicare, and most private insurance policies. Using a computer, in any form, in the 21st century is arguably more of a necessary tool for communication, research, and financial management as well as socialization than ever before. Current trends seem to indicate that our dependency on such technology will only increase. Adapted software and hardware are abundant and for most limitations are affordable ($200 or less). However, for those with complex needs, the technology can be very costly ($1000 for basics, $3000 for the more comprehensive systems) but not a covered benefit. From a cost-saving viewpoint, it makes sense. One could argue that it is not medically necessary to read e-mail or to turn a fan on. But why? The ability to read e-mail is becoming more medically necessary because many physicians and health systems now allow you to e-mail your physician to ask questions or to get instructions about your medical management, for example, medication use. Not being able to turn a fan on when you are overheated can lead to increased anxiety, which can have adverse effects on blood pressure and respiratory function. Adjusting an automated bed can prevent skin problems, aid with respiratory issues, and prevent rapid changes in blood pressure. Take away the ability to use a telephone and we are potentially taking away the ability to communicate with emergency personnel or call a doctor’s office with questions or concerns. Not having control of one’s environment or needing somebody to read and reply to one’s e-mail only emphasizes the losses of function, underlines the dependency, and often increases costs by increasing the need for personal care assistants. Such outcomes are counter to the goals of rehabilitation: to enhance autonomy and to improve function and quality of life. This technology exists and has for decades yet remains inaccessible except for those with extraordinary monetary means. I am not talking about Star Trek communicators or robotic systems, but devices that can provide access to these functions with a simple voice command or by looking at a computer screen. Other health care systems, such as those in most of Europe, place a greater value on EADL technology, and it is readily available to those in need. Many of the higher tech EADL options, which range in cost from $3000 to $15,000, have been developed in Europe. American companies have little financial incentives to develop and market these technologies. Why is this? I believe it is because the European countries place greater value on, and thus more resources toward, supporting long-term care services for those living with chronic disabilities. Although I am not suggesting that we move to the European medical coverage model, it would be helpful to those with the most-severe disabilities to have the ability to access these technologies. My other role as a citizen of the country of providers was in my role as a spouse. My husband lived with spinal muscular atrophy by using a wheelchair his whole life. We used outside caregivers intermittently through the years,

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which were financed mostly by us. Private insurance companies do not help with caregiving services, and state funding was limited because we both had full-time jobs and made too much money to qualify for these state-supported personal assistance services. To qualify for services, it was recommended that we either divorce or my husband quit his job. This latter recommendation ironically was made by the same agency that assisted him through school so he could have a job! We were active taxpayers with a mortgage and a child but had a better chance of getting support if we became more dependent on the state. I obviously do not have the answer to this dilemma and am not suggesting that we take funds away from those without an income source, but I can say we struggled to maintain our marriage and juggle the various life challenges along with the care he needed. I have received more financial support through social security after his death than what was available while he was alive. My move to the second country, that of care recipient, occurred approximately 5 years ago when I developed the symptoms and ultimate diagnosis of ALS. My progression was fairly typical, starting with a slight limp, gradual weakness in my legs, then in my arms to my current condition of no movement of my arms and legs, and compromised breathing. I require my own caregivers and am dependent on the same technology I worked with as a citizen of providers. While working, I was fortunate enough to have good health insurance through my employer and thus now have a power wheelchair with the necessary components needed to accommodate my predictable changes in function. When I first started using a chair I drove with a joystick and had armrests designed to allow me to transfer independently into the driver’s seat of my modified van. Without the personal modifications, I would have lost approximately a year of driving to and from work. I currently drive my wheelchair by using a head array. I can no longer use my arms, and, without the specific changes made for me, I would not be able to drive my chair and my arms would be in a poor position, which leads to pain and limited sitting tolerance. I realize that, if I were dependent on Medicare funding and needed a wheelchair at this time, my options would be significantly limited due to current changes in Medicare guidelines. The requirement that a wheelchair be rented for 18 months is reasonable for shortterm needs. However, for those with a permanent disability, particularly those with a progressive condition, 18 months without a customized wheelchair could have significant functional as well as medical implications. Similar guideline changes in procurement of an SGD has drastically limited choices as well as increased dependency for those most in need. SGDs are specialized computers for those who cannot speak, which provides a way to create messages onscreen and then speak them with a computerized voice. Those devices most beneficial to individuals with complex disabling conditions can provide access to forms of

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electronic written communication, such as word processors, e-mail, and message boards. If I were to need an SGD at this time (given my current physical abilities) I would have the option to choose between 2 devices with the electronic written communication capabilities compared with roughly 7-10 choices covered a year ago. When I am unable to move my head sufficiently, my option narrows to one. Added to my elimination of choices I will be unable to use e-mail, research my condition, connect with others like me, get online technical support for my device, receive software updates, or use a word processor such as the one I am using to write this article. Navigating the health care delivery system requires a high level of sophistication. As a citizen of the country of providers, I have a fairly comprehensive understanding of the technologies available, and I have been able to advocate for myself. I knew which options were available in wheelchairs and have easy access to the experts. I knew how to adapt my cellphone when I was still able to manipulate it and which technology to get once I lost use of my hands. I knew which EADL would be the most economical and functional. Unlike most individuals with ALS, I did not have the added costs of a modified house or van because we had those for my husband. I know what options are available to me if I lose communication and swallowing functions. However, despite my experience, it is easy to get overwhelmed and frustrated as I learn firsthand the reality of living with ALS. In addition to coping with the consistent loss of function and increased dependence on others, I am challenged not only to find, train, and keep quality caregivers but also to find a way to pay them a living wage. For me and for so many who live

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with chronic progressive disabilities, we want the choice to be able to live our lives to the fullest without bankrupting our families. I believe that our health care system has many areas of strength. Quality trauma care, innovative surgical techniques, and treatment for acute conditions such as cancer and those conditions that affect the heart, bones and joints, and other organs, to name a few, are saving lives and improving quality of life. However, when it comes to providing supports for those with chronic conditions and long-term needs, we are severely lacking. I could be completely naive but I do not think that the rule makers plan on making the lives of those in need worse. I have never heard a political campaign speech highlighting plans to ignore the financial burdens or restrict technology access to those most in need. But the reality remains, rather than foster choice and maximize function, current regulations often serve to unnecessarily create dependencies and harms. Once again, I am at a loss as how to fix all these problems. I know that private foundations, such as the Muscular Dystrophy Association and several locally based organizations, including the Les Turner ALS Foundation here in Northern Illinois, try to step in and fill these gaps. But at the end of the day, the question is one of values: what sort of country do we want to inhabit? Personally, I favor a country that recognizes how regulation changes could impact the lives of all, with particular attention to those most at risk, by reducing rather than creating financial stress and having more health care options instead of fewer. I favor a country that helps to make the unique needs of those of us with a complex medical condition a little less complex.

Commentary From Michael L. Boninger, MD The Wheelchair Needs Our Help I have devoted most of my profession research career to the study of assistive technology. The technology I have been fortunate enough to study has run the gamut from a brain computer interface that was feature on 60 Minutes to rehabilitation robotics. I am excited by the possibilities these technologies hold for the future. However, at present, the wheelchair remains the single most important technology for individuals unable to ambulate and is likely the most important prescription most physicians ever write. What other prescription can enable a person who would otherwise be stuck in bed to be fully independent in mobility? The wheelchair also is cost efficient and is relatively inexpensive compared with other procedures, for example, a hip replacement. A well-prescribed and used wheelchair can save money by preventing expensive secondary complications, such as depression, rotator cuff tears, and pressure sores. Despite the importance of the wheelchair, the way it is regulated and funded by the federal government is

antiquated and seemingly constantly changing for the worse. The recent move toward competitive bidding is one prime example. This program, which is being rolled out in certain locations by Medicare, requires power and manual wheelchair orders to go out for competitive bid [1]. There is great concern that the bidding process will lessen the amount of work that wheelchair dealers are willing to do as part of an evaluation and delivery of the chair and will impact service provided when a chair breaks down. Further, research on wheelchairs, for the most part, is given second priority over sexier studies that involve robotics or exoskeletons. Is there evidence that wheelchairs, how they are made, how people are trained to use them, and how they are prescribed could be better? Yes, unfortunately, there is plenty of evidence. In an interesting survey study, Chaves [2] found that wheelchairs were simultaneously listed as the most enabling technology by individuals with spinal cord injury and as the technology that most limits mobility. Intrinsically, the individual who uses the wheelchair knows that he or she would be stuck without it, but they also see its shortcomings. Is it

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possible to build a chair that climbs stairs, could go on the beach, fit into a bathroom, turn on a dime? We have the technology to do all these things, a fact that is not lost on your average wheelchair users. However, the wheelchair industry cannot even get the simple things, such as quality, right. Wheelchair quality is poor. Results of recent studies found that more than 50% of wheelchair users experience a failure of their chair that requires a repair every 6 months [3]. That is right, more than 50%. Further, these failures cause injuries, missed work, and times when otherwise active users are stuck at home. Does anyone think we cannot fix this problem? If we can make cars, a much more complicated device that goes thousands of miles without needing repairs and maintenance, surely we can build a better chair. But the reimbursement system rewards dealers for pushing poorer quality chairs. Manufacturers thus are rewarded for cost engineering, not innovation. Information to allow for informed choices as to higher-quality chairs is lacking, and the regulations related to quality are inadequate. What about training wheelchair users how to use their chairs? Again, recent work has shown that wheelchair users do not have basic wheelchair skills [4]. Further, the lack of wheelchair skills tracks with less participation in society. It is not surprising that wheelchair skills are not being taught because the length of stay in rehabilitation has reduced dramatically. It may not be possible to teach the skills needed before someone is discharged. In addition, there is evidence that people are trying to walk instead of using a wheelchair, even when they might not have the strength to do so [5]. The desire to walk after a catastrophic injury is normal. However, it is possible that all the hype generated by cure research, exoskeletons, and robotic training is fueling unrealistic hopes of a newly injured person that he or she may not need the chair. This same study found that, when wheelchair users are unsuccessful at attempts to ambulate, it has negative consequences, such as less participation in society, more pain, and more depression. As physiatrists, we have a responsibility to try to fix these problems. It is the right thing to do and, if done well, would undoubtedly save the health care system money. It is not an easy task, and changes would not happen overnight. However, we have to try. Here are a few suggestions that an individual physiatrist can take: 1. Teach your patients the importance of advocacy. With tight financial times, every medical group under the sun is

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asking for money. Congress is much more likely to listen to patients than to another group of physicians or suppliers. Support organizations that are working to change antiquated Medicare rules for the benefit of people with disabilities (eg, www.usersfirst.org). Emphasize the importance of wheelchair skills to your patients. The cure and the promise of advance technologies will come some day, but it is not here now, and we need to tell our patients that they need to learn how to live now. Take responsibility for the prescription you sign related to the wheelchair. Ask critical questions, such as the following: is the chair high quality; what do your other patients say about the chair? Also question whether the process of selecting the chair is being driven by you and other clinicians or by the dealer. Advocate for continued investment in wheelchair research. It may not be sexy, but, as highlighted above, it is desperately needed. We can publish testing results that show which chairs fail. We can build better chairs, for example, ones that last longer, go more places, and truly foster the independence the wheelchairs are meant to foster.

In the end, a wonderful aspect of PM&R is the opportunity to advocate on behalf of our patients, to empower them to act, and to know that we are fighting the good fight. The fight to improve the quality and provision of wheelchairs is a fight worth having.

REFERENCES 1. Medicare.gov. Competitive Bidding Program. Available at: http://www. medicare.gov/what-medicare-covers/part-b/competitive-bidding-program. html. Accessed July 20, 2014. 2. Chaves ES, Boninger ML, Cooper R, Fitzgerald SG, Gray D, Cooper RA. Assessing the influence of wheelchair technology on perception of participation in spinal cord injury. Arch Phys Med Rehabil 2004;85:1854-1858. 3. Worobey L, Oyster M, Nemunaitis G, Cooper RA, Boninger ML. Increases in wheelchair repairs, breakdown, and adverse consequences for people with traumatic spinal cord injury. Am J Phys Med Rehabil 2014;91:463-469. 4. Hosseini SM, Oyster ML, Kirby L, Harrington AL, Boninger ML. Manual wheelchair skills capacity predicts quality of life and community integration in persons with spinal cord injury. Arch Phys Med Rehabil 2012; 93:2237-2243. 5. Riggins MS, Kankipati P, Oyster ML, Cooper RA, Boninger ML. The relationship between quality of life and change in mobility 1 year postinjury in individuals with spinal cord injury. Arch Phys Med Rehabil 2011;92:1027-1033.

Commentary From Marc Duerden, MD The Views of a Physiatrist Working Within the Medicare Program The Medicare program is a national social health insurance program run by the U.S. federal government. The Medicare

program is a defined benefit program. This simply means that Medicare does not pay for all the items or services requested; rather, it will only pay for specific items or services that are documented to be reasonable and medically necessary for the Medicare beneficiary. One of these service

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lines that the Medicare program will cover is medically necessary Durable Medical Equipment, Prosthetics, Orthotics and Supplies (DMEPOS) defined in the Social Security Act (the “Act”) [1]. The section of the Act that describes DME provides a very specific definition of a wheelchair. This section states, in the relevant part, “The term “durable medical equipment” includes iron lungs, oxygen tents, hospital beds, and wheelchairs (which may include a power-operated vehicle that may be appropriately used as a wheelchair but only where the use of such a vehicle is determined to be necessary on the basis of the individual’s medical and physical condition and the vehicle meets such safety requirements as the secretary may prescribe) used in the patient’s home (including an institution used as his home other than an institution that meets the requirements of subsection (e)(1) of this section or section 1819(a)(1)), whether furnished on a rental basis or purchased [1]. The reason for reviewing this section of the law is to clarify that the Medicare program will pay for some but not all wheelchairs despite the reported need of the equipment [2]. The critical issue for a treating physician (or other appropriate qualified practitioner as outlined in the Medicare Benefit Policy Manual, Chapter 13, Section 40.4) is to document in the medical record why the coverage for the wheelchair is medically necessary. The responsibility to document the medical necessity of the wheelchair is not able to be delegated to other health care providers. Indeed, physicians are almost always the critical access point for a Medicare beneficiary. In addition to documenting medical necessity, the physician also must provide the prescription for the wheelchair. Physicians also are standing at the gate when wheelchair repairs are needed. To meet the requirements for the medical necessity of a wheelchair, the physician needs to apply and document knowledge in 3 specific areas: (1) the specific objective clinical aspects of his or her patient, (2) the various component parts and types of wheelchairs and how they apply to the patient, and (3) the Medicare regulations for the wheelchair prescription. Regarding the clinical component, a physician needs to provide objective documentation of the limitations in strength, endurance, range of motion, coordination, and absence or deformity in one or both upper extremities. It would be considered insufficient to document “impaired gait” without an objective assessment of the gait patterns and current use of assistive devices. Regarding the type of wheelchair prescribed, the physician needs to document the patient’s functional abilities and his or her analysis of the appropriateness of the selected power or manual wheelchair. The Medicare program integrity requirements state, in relevant part, “When restoration of function is cited as a reason for use of DMEPOS, the exact nature of the deformity or medical problem should be clear from the medical evidence submitted. Also, the manner in which the equipment or device will restore or improve the bodily function should be explained by the treating physician” [3]. A physician’s

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familiarity with wheelchair features can assist the patient to be able to obtain the optimal wheelchair [4]. It does not matter whether the wheelchair is a conventional manual wheelchair, a lightweight wheelchair, a push rim manual wheelchair, or a power wheelchair. It is essential that the prescribing physician be familiar with wheelchair features for the correct product to be provided to the Medicare beneficiary. The third area with which a prescribing physician must be familiar is the Medicare regulations. With the implementation of The Patient Protection and Affordable Care Act, commonly called the Affordable Care Act [5], it is not difficult to reason that there will be an increase in the regulatory requirements to qualify for items of DME, especially optimally configured manual wheelchairs, power wheelchairs, and complex rehabilitation technology (CRT) wheelchairs. The CRT wheelchair is a uniquely designed wheelchair that requires individual configuration and fitting to accommodate for a patient’s specific functional needs. A CRT wheelchair could be a manual or a power wheelchair that provides alternative positioning, adaptive seating, or unique electrical or mechanical modifications to the wheelchair to improve the patient’s mobility. Currently, the power wheelchair Medicare requirements apply to the CRT wheelchairs, but there have been efforts by clinicians and national organizations to develop a separate Medicare benefit category for CRT [6]. The CMS has multiple ways that a DME supplier can be paid for the DME supplies. Two of the payment options are to purchase the item with a single payment or to have the equipment paid as a capped rental item. Recently, a number of products that were defined as CRT were reclassified by Medicare as only capped rental equipment [7]. This meant that Medicare would only start paying the DME suppliers the Medicare rate rental fee for 13 months for the wheelchair and the single purchase option for the wheelchair was no longer an option. After the 13-month time period, the ownership of the equipment transfers to the Medicare beneficiary. Physicians need to know the basic Medicare requirements for the assessment of the power wheelchairs. The Medicare program has a specific National Coverage Determination, which is set up in an algorithm and can be used by the physician to address the coverage requirements for the prescribed power wheelchair [8]. Each of the 4 DME Medicare Administrative Contractors (DME MAC) has centralized coverage requirements described in their Local Coverage Determinations, which provides additional guidance to the prescribing physician. The DME MACs are responsible for processing DMEPOS claims for a defined geographic area or “jurisdiction.” CMS currently has 4 DME MAC jurisdictions that manage claim payment, claim audits, and numerous other functions for Medicare beneficiaries and work with suppliers of DMEPOS [9]. The states assigned to each of the DME MAC jurisdictions and the respective contact information can be found on the CMS.gov Web site.

PM&R

One of primary areas in which the system is inflexible and could be perceived as most difficult is the area of documentation. More often than not, the medical record documentation contains common and critical flaws that prevent the Medicare suppliers from receiving payment for the provided power wheelchairs or even the light-ultralight manual wheelchairs. Physiatrists should have an advantage in this regard. Because a physiatrist is accustomed to working in an interdisciplinary team model, the use of a referral to a physical therapist, occupational therapist, an ATP, or even a seating and mobility specialist should be viewed as beneficial and many times as necessary to meet the coverage criteria under the Medicare rules. To facilitate access to the appropriate power wheelchairs or scooter, CMS recently implemented the Power Mobility Device Prior Authorization Demonstration Project. This project was initiated for prescribed power mobility devices written on or after September 1, 2012, in 7 states [10] and is planned to be expanded to an additional 12 states in the future [11]. The prior authorization program is not mandatory. However, this program has become widely accepted by the DME supplier community. According to Flaherty, “One thing the industry would like to push forward in any future vehicle: an expansion of the power mobility device prior authorization demonstration project. At the behest of the Senate Finance committee, the industry has drafted language that would expand the demo from seven states to all 50 and would expand it to include all power mobility devices, including Group 3 wheelchairs” [12]. A common misunderstanding of physicians (and other medical providers) is that a scooter is the same as a power wheelchair. A scooter has a front tiller driving device and comes with either a 3wheeled or 4-wheeled platform. This is different from a power wheelchair because the power chairs have a typical wheelchair configuration with the addition of a control panel in the arm (often a joystick), which allows the patient to operate the wheelchair. Because there are several types of power wheelchairs, the Medicare program has developed 5 categories or “groups” of power wheelchairs. Each power wheelchair group has specific coverage criteria [13]. The group determinations are based on the wheelchair performance characteristics, the technology that the wheelchair possesses, and the mobility needs it will serve for the patient. The sequential numeric codification for power wheelchair group 1 to group 4 indicates that the higher the group number, the more advanced capabilities the power wheelchair will possess. The group 1 power wheelchairs have basic seating capabilities, are compact, and are incapable of advanced electronics. The group 2 power wheelchairs are very basic power wheelchairs with either a captain’s seat or a specially designed rehabilitation seat. The more advanced group 2 power wheelchair possesses drive control devices with single or multiple power options. A group 3 power wheelchair has high-end seating components with advanced electronic

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capabilities and advanced performance capabilities. The group 4 power wheelchairs have additional capabilities that are not necessary for use within the home because they typically include high-speed potential, or the ability to climb curbs, or have long-distance driving capabilities. The group 5 power wheelchairs are the pediatric power wheelchairs. Undoubtedly the documentation requirements might feel burdensome for physician prescribers. One potential solution to ease the administrative burden for smaller clinical PM&R practices and reduce some administrative burden for a typical clinical PM&R practice (not affiliated with a specialty seating clinic) would be to develop an individualized office standard operating procedures for power wheelchairs evaluations (especially complex rehabilitation technology wheelchairs). This preplanned operating procedure should facilitate the integrated rehabilitation team model needed for these wheelchairs. The key feature of the standard operating procedures would be the initial selection of local, reputable, and experienced DME suppliers who are approved competitive bid companies. A patient can find the name and contact information for the CMS-approved competitive bidding companies by accessing the Medicare.gov Web site, locating the supplier directory, and then finding the list of local CMS approved suppliers listed under the Standard (Power & Manual) Wheelchairs, Scooters, and Related Accessories section. With the DME supplier and therapists preselected, the physician can reduce the administrative burden of getting the wheelchair evaluation (sometimes called the “face-to-face evaluation”) completed. These new face-to-face requirements [14] will require modifications to the typical physician’s office. The implementation of the DME face-to-face encounter requirements, including amendments to it made by the Affordable Care Act, will require increased physician awareness and understanding of the new Medicare requirements. The face-to-face evaluation can only be completed by the physician or a qualified practitioner, and requires 2 components to qualify: (1) the functional assessment, and (2) a direct face-to-face visit with the physician or qualified practitioner. Previously, the usual time period between the physician face-toface evaluation and the DME supplier providing the power wheelchair has been 45 days but under the new regulations can be performed within 6 months for the additional DME items to be covered. If the physician works with a skilled therapist, then they have already completed the first step in the face-to-face visit requirement. The physician would then only need to meet with the patient, assess objective clinical findings, document substantiating and collaborative information, and present all of the findings in the medical record. When I was in full time clinical PM&R practice, I would frequently request that a qualified therapist evaluate the patient if the mobility limitations were particularly complicated. Because the documentation requirements for wheelchairs and other types of DME items are becoming more rigorous, it would seem prudent for physicians to consider

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having an independent therapist perform these seating and positioning evaluations. Physicians performing these face-toface evaluations independently or with the assistance of a trained therapist would be considered appropriate. The utilization of a therapist’s evaluation would facilitate the documentation requirements and reduce the administrative burden of the new face-to-face requirements. Of note, their evaluation time also can be billed independently under Medicare therapy evaluation codes. Because the physician sits at the access gate for these special wheelchairs, we are tasked with the great responsibility to prescribe appropriately. The PM&R physician can ensure that the patients who need the necessary DME items are able to obtain the equipment and those who do not need the equipment are not prescribed a wheelchair to meet a convenience request. Proper patient selection and sound clinical judgment is required to appropriately provide a power wheelchair or any DME item despite a patient’s request for a particular product. This assessment will aid the health care system to meet the needs of the entire population.

ACKNOWLEDGMENTS I thank Harold Welsch, PhD, at DePaul University, for his guidance and direction on this project and all of the DME users and industry professionals who provided input while I researched this industry, with special thanks to Kristi Kirschner, MD, Ed Kane, Judy Panko-Reis, Jennifer Thomas, Jessica Pedersen, and Marilyn Martin.

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REFERENCES 1. Social Security Act 19, Section 1861 (n). 2. Center for Medicare and Medicaid Services. Durable Medical Equipment, Prosthetics and Orthotics, and Supplies (DMEPOS). In: The Medicare Claims Processing Manual, Baltimore, MD: CMS 06-20-14. 3. Center for Medicare and Medicaid Services. Items and Services Having Special DME Review Considerations x5.9 e Evidence of Medical Necessity. In: Medicare Program Integrity Manual (Rev. 528). Baltimore, MD: CMS, 07-03-14. 4. Levy CE, Chow JW. Pushrim-activated power-assist wheelchairs: Elegance in Motion. Am J Phys Med Rehabil 2004;83:166-167. 5. The Affordable Care Act of 2010 (ACA), Pub. L. 111-148 (2010). 6. Clayback D. Proposal to create a separate benefit category for complex rehab technology. January 2011. Available at: http://192.185.148.88/waccess2c/ blog/wp-content/uploads/2014/05/Proposal+for+CRT+Sep+Benefit+Category -+January+2011.pdf. Accessed: October 1, 2014. 7. Fed Register 2013;78(231). 8. Centers for Medicare and Medicaid Services. National Coverage Determination (NCD) for Mobility Assistive Equipment (MAE). In: CMS Manual System Pub 100-03. Baltimore, MD: CMS, 05-05-2005. 9. CMS.gov. DME MAC Jurisdictions. Durable Medical Equipment (DME) Medicare Administrative Contractor (MAC) Jurisdictions. Available at: http:// www.cms.gov/Medicare/Medicare-Contracting/Medicare-AdministrativeContractors/DME-MAC-Jurisdictions.html. Accessed July 30, 2014. 10. Medicare Program. Prior authorization for power mobility device (PMD) demonstration. Fed Register 2012;77(146). 11. Prior authorization of power mobility devices demonstration expansion. Fed Register 2014;79(65). 12. Flaherty T. Industry pushes forward after disappointing vote. HME News. March 28, 2014:1. 13. Centers for Medicare & Medicaid Services. Local Coverage Determination for Power Mobility Devices (L27239). In: Local Coverage Indexes. Available at: http://www.cms.gov/medicare-coverage-database/ indexes/national-and-local-indexes.aspx. Accessed: October 1, 2014. 14. The Patient Protection and Affordable Care Act, Pub L. No 111-148, 124 Stat 6407 (2010).