Is an Appropriate Wheelchair Becoming Out of Reach? – Part 2

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” 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 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. As always, I welcome your comments to this column or suggestions for future columns! 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 service–oriented 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. 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