Comments from Access Living of Metropolitan Chicago on Access to Care Issues for DME

August 22, 2016

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-1651-P
P.O. Box 8010
Baltimore, MD 21244-8010
Submitted electronically

Comments from Access Living of Metropolitan Chicago on
Access to Care Issues for DME, Federal Register, June 30, 2016, pp. 42864-42865.

Access Living is grateful for this opportunity to comment on the subject of “Access to Care Issues for DME,” contained in the proposed rule to Medicare issued by CMS on June 30, 2016. Established in 1980, Access Living is the Center for Independent Living for the Chicago metropolitan area. Our mission is to foster an inclusive society that enables Chicagoans with disabilities to live independent, fully-engaged, and self-directed lives.

Serving a cross-disability population, Access Living works with and supports numerous consumers who have disabilities resulting in significant mobility and functional limitations. In FY15, fully 61% of Access Living’s consumers experienced such limitations. The medical conditions of these consumers, who require customized rehabilitation technology to go about their daily lives, include cerebral palsy, muscular dystrophy, spinal cord injuries, multiple sclerosis, and spina bifida. For these individuals, ongoing access to highly specialized equipment is not a luxury; it is a necessity. Without such access, our consumers with mobility disabilities cannot carry out the ordinary activities of daily living, cannot maintain employment, cannot make it to doctor visits, cannot attend classes. We welcome changes to Medicare rules that will foster timely and regular provision of appropriate equipment by a pool of educated suppliers and distributors who understand the requirements of adjustments and fittings and who can assure proper maintenance and repairs.

Obstacles to timely receipt of needed DME and repairs due to conflicting program requirements include the following:

Diagnostic coding is not uniform in Medicare and Medicaid. This disparate coding of diagnoses affects what kind of DME is made available. We know of one dually eligible consumer who has been struggling with necessary wheelchair repairs because of the way Medicare codes her diagnosis. In addition to the need for repairs, the consumer’s disability resulted in continual bodily changes, necessitating minor adjustments to her chair on an annual basis to assure that she was not experiencing pressure sores. Because the coding discrepancies between Medicaid and Medicare were complex, the consumer’s physician was unsure how to write an appropriate prescription to satisfy the need for repairs and adjustments. Both Medicare and Medicaid denied the repair request. As a result of the ill-fitting chair, the consumer developed gangrene.

Access Living is aware that, on October 1, 2015, the ICD-10 system of medical coding was formally adopted as the standard for Medicare. If similar or identical uniformity were required for Medicaid, such alignment of diagnostic standards would dramatically improve access to DME.

The dearth of DME suppliers presents a significant obstacle to timely receipt of DME and repairs. Because of the uncertainty of payment rates under Medicare and the egregiously long delays of many months in reimbursement by Medicaid, wheelchair suppliers in Chicago have dwindled to two companies. When suppliers go out of business, consumers not only face extraordinarily long wait times to obtain medically necessary equipment but have no recourse with respect to repairs of equipment purchased from a now-defunct company.

Impacts on beneficiaries from delayed access to needed equipment and repairs

While not every one of the impacts discussed below is attributable specifically to the single factor of misalignment between Medicare and Medicaid requirements and standards, our consumers’ stories about the effects experienced when they cannot obtain the mobility equipment they need, whatever the reason, dramatically illustrate how severely disrupted their lives are when access to DME is denied or impaired.

a. Repairs of defective equipment are notoriously slow and difficult to obtain.

Repairs are frequently necessary because of unreliable and poor quality equipment. A recent study found that more than 50% of wheelchair users experience a failure requiring a repair every six months. A separate survey conducted by Access Living found that these problems exist for consumers with all types of insurance or payment methods. Equipment failures can pose serious physical danger. One Access Living consumer had a wheelchair with a battery that failed to remain charged, requiring him to be mindful at all times of finding accessible electrical outlets for recharging. On one occasion, the battery failed when our consumer was in the middle of a congested city intersection, and he had to be pushed to safety by a bystander. Another Access Living consumer had a wheelchair with a battery that stopped and started unpredictably, causing the chair either to run into physical barriers or to stop in dangerous places.

Despite the frequent need for equipment repairs, consumers encounter time-consuming and cumbersome authorization and preauthorization requirements, difficulty finding suppliers that will undertake repairs or that employ knowledgeable technicians, long waits for new parts that must be ordered because suppliers do not retain a large pool of common parts, difficulty finding suppliers that will make home calls to replace defective parts or deliver a repaired chair or scooter, and lack of transparency and accountability among manufacturers and suppliers. One Access Living consumer spent over a year being referred back and forth from the manufacturer to the supplier of a dangerously defective chair. It was not until this consumer sought assistance from the Illinois Attorney General’s office in enforcing the wheelchair warranty that the problem was resolved.

b. Consumers face sometimes ruinous short- and long-term costs resulting from delays in repairs.

Consumers who cannot obtain equipment or get existing equipment repaired expeditiously lose time at work, at school, at medical appointments, and at all other essential activities of life – sometimes even facing the prospect of needless and costly institutionalization. The use of loaner chairs during these long waits should be deemed a “medical necessity” and may provide temporary relief, but it is not a viable long-term solution because loaner chairs are often ill-fitting and can cause further injuries and medical complications such as pressure sores at risk of infection, muscle strains, and even falls from chairs lacking appropriate guards.

Examples of the adverse effects Access Living’s consumers have experienced as a result of lack of access to appropriate DME include the following:

• A consumer whose wheelchair required repairs missed two months of physical therapy in addition to his other activities of daily living. Confined to bed, he acquired three pressure sores. He was finally given an ill-fitting loaner chair that worsened his pressure sores.

• Another consumer with severe cerebral palsy waited over six months for repairs to her chair. She was given a manual loaner chair which required her, despite her muscular limitations and spasticity, to push herself, thereby developing sores on her hands.

• It took one consumer with muscular dystrophy a full year to receive a physical therapy fitting after being referred by her physician. The rental chair she was using was not customized, and she developed back problems. After she finally was able to obtain the prescribing and fitting documents required, the wheelchair company went bankrupt. In all, this consumer waited – with an inappropriate rental chair – between 4 ½ and 5 years for the customized chair she needed.

• Some individuals have been shipped equipment by manufacturers that provided no fittings, no adjustments, and no customization of the equipment. Unable to use the equipment, these individuals remained in bed while the equipment sat unused in a closet.

It is no answer to say that a consumer can manage during a wait for repairs by using a “loaner chair.” Loaner equipment is often inappropriate in size and fitting for their body and/or disability and can cause further injuries or medical complications. For example, one consumer mentioned she needed a seatbelt and side guards to help keep her body upright, but the loaner chair she was given had neither, resulting in discomfort and falls from her seat during the months she was required to use that chair.

Potential regulatory or legislative reforms:

A separate Medicare Complex Rehabilitation Technology Benefit is needed. For people with mobility disabilities, properly configured wheelchairs and other mobility equipment is essential to allow the continuation of employment and of independent living in the community. Customized power wheelchairs and scooters are highly complicated pieces of equipment. Provision of this medically necessary complex rehab technology requires proper evaluation, fitting, adjustment, programming, and training in its use.

Medicare does not currently have a separate benefit for complex rehabilitation technology, making its availability particularly problematic. In the spring of 2015, HR 1516 and S 1013 were introduced in the House and Senate, respectively, as a legislative approach to resolving these access problems by creating that separate benefit. However, neither bill has progressed beyond the initial committee level. Meanwhile, consumers with mobility disorders continue to be stymied in accessing the equipment they need to maintain a reasonable quality of life. To the extent that administrative rulemaking may be made use of in establishing the separate designation of complex rehab technology items and eligibility criteria, such rules would offer a significant step toward resolving these access issues.

Modification of preauthorization requirements to exempt minor repairs is badly needed. Access Living’s consumers with mobility disabilities constantly face delays in accessing their equipment or in obtaining needed repairs because of preauthorization requirements. Repairs can be as minor as new batteries or “joysticks.” Yet the inability to access such simple repairs means that consumers are forced to use dangerous equipment, such as wheelchairs that “die” unexpectedly in busy streets or wheelchairs that cannot be controlled adequately. In one case, a young man with muscular dystrophy who is dually eligible experienced a situation in which his wheelchair vendor required a preauthorization form from a physician in order to repair a wheel alignment, while the physician would not see the young man because the physician was not “in network” at the MCO in which the consumer had been passively enrolled. The consumer did not receive basic and necessary wheelchair repairs because of this strict preauthorization process, ultimately resulting in even greater damage to his equipment. The consumer missed many college classes and was forced to make up a great deal of work. Access Living recommends that regulatory action exempt from prior approval requirements any wheelchair or scooter part or repair that is less than $500 in cost or any set of multiple parts less than $1500.

Lack of reuse systems means equipment waste despite the urgent need of consumers for complex wheelchair technology. In Illinois, Medicaid does not have a system for recycling equipment. Equipment purchased by consumers and no longer needed is often sold on eBay or Craigslist or is simply donated. The federal Assistive Technology Act of 2004 includes power and manual wheelchairs and scooters and assistive technology services of individual evaluations, purchasing or leasing of a device, fitting and customizing of a device, repairing and replacing of a device, training or technical assistance for an individual with a disability, and services including the Internet that expand access to needed technology. Under the Act, each state receives a grant to fund a particular Assistive Technology Act Project. The Illinois project states that it has over 2,000 devices available for loan, but only up to five weeks – clearly an inadequate period of time for consumers who are required to wait months or even years for wheelchairs and scooters. Access Living recommends that enforcement of this Act be strengthened with respect to complex rehab technology and that standards and mandates be prescribed by regulation to the extent possible in order to foster the original goals of the Act.

Increased enforcement of wheelchair warranty laws would help to resolve the dilemmas faced by consumers who cannot obtain satisfaction from suppliers or manufacturers with respect to defective equipment. One Access Living consumer who had been provided a dangerously defective power chair spent over a year being referred back and forth from the manufacturer to the supplier with respect to repair or replacement. It was not until this consumer sought assistance from the Illinois Attorney General’s office in enforcing the wheelchair warranty that she was finally able to resolve the problem. Such problems are common, if not ubiquitous, and urgently in need of legislative or regulatory remediation.

We understand that warranties are generally a matter of state common and statutory law. However, we believe there is an urgent need for a uniform model warranty law or some other approach providing consumers relief in their dealings with suppliers and manufacturers. An example is the Illinois Assistive Technology Warranty Act, 815 ILCS 301, eff. January 1, 2006. Defining assistive technology to include equipment used to maintain or improve functional capabilities of individuals with disabilities, the Act specifically includes complex rehab technology. It mandates the creation of an express warranty of not less than one year after delivery. In the absence of an express written warranty, the Act creates a one-year warranty by operation of law. The warranty guarantees that the technology device will be free from any condition or defect that substantially impairs its value to the consumer. A nonconforming device brought to the attention of, and made available to, the manufacturer or dealer/lessor requires a reasonable attempt to repair at no charge to the consumer. Failing repair, the consumer is entitled to a refund or a comparable new device within 30 days. The defective item may not thereafter be sold or leased.

Thank you for this opportunity to comment on the critically important subject of “Access to Care Issues for DME,” contained in the proposed rule issued by CMS on June 30, 2016.

Very truly yours,

Amber Smock
Director of Advocacy
Access Living, Chicago