"Mobility devices enable persons with disabilities to achieve personal mobility, and access to these devices is a precondition for achieving equal opportunities, enjoying human rights and living in dignity." (United Nations, 1993)
This feature issue of Topics in Geriatric Rehabilitation focuses on seating and wheeled mobility (SWM) for the elderly and individuals with mobility impairments. As health care continues to change and evolve, this edition is devoted to taking a step back and looking at SWM clinical practice, research, and policy of the past as a way to inform how we need to prepare for the future.
Within this edition, discussion of SWM clinical practice and policy will be centered on the United States, so it may not directly reflect the issues faced by clinicians, payers, and policy makers in other countries. Yet, the challenges and need for research to inform clinical practice and policy development will apprise stakeholders from other countries faced with similar challenges. In the United States, SWM equipment is categorized by policy makers and payers as durable medical equipment (DME) and is therefore overwhelmingly provided within the medical model of service delivery. SWM products and services can be described as "standard" or "complex rehabilitation technology" (CRT). Complex rehabilitation technology refers to individually configured manual wheelchair systems, power wheelchair systems, adaptive seating systems, alternative positioning systems, and other mobility devices that involve evaluation, fitting, configuration, adjustment, or programming.2 The persons using CRT typically have more functional and medical needs that require more advanced interventions beyond standard DME. The current system of service delivery for both standard DME and CRT can vary widely and involve differing amounts of health care professional involvement.3
CHALLENGES OF EVOLVING HEALTH CARE SYSTEM
In general, in the United States, DME and CRT are purchased through third-party insurers such as Medicare, Medicaid, or private payers. Recent studies indicate that people with disabilities frequently lack either health insurance or coverage for necessary services including DME, CRT, and assistive technologies.4 As a result, they may incur greater cost-sharing obligations or limits on benefits that prevent them from obtaining medically necessary equipment and services.4
In this edition, Stanley presents a 20-year review of the evolution of CRT legislation and regulation and relates how the overall effect of these changes has impacted consumer access. Minkel presents a case study of a New York State Medicaid Managed Long-Term Care demonstration program highlighting specialized CRT services and supports provided to adults with physical disabilities, to enable full community participation. The challenges to providing CRT services and technologies to dually eligible Medicare/Medicaid members are discussed along with identifying opportunities to be realized within a fully integrated single-payer program. Jones and Rader's article looks at improvements in SWM service provision for the elderly population in nursing homes over the past 2 decades and describes a model process used to promote improvement in Oregon and other states. Cohen and Perling's article identifies barriers to mobility device access and implications for policies and practices of assistive technology reutilization programs.
EVIDENCE FOR SWM TECHNOLOGIES AND SERVICES
Increasingly, policy makers and third-party payers (eg, Medicare and Medicaid) use evidence-based policy determinations for SWM devices based on what limited scientific evidence exists.5,6 While the adoption of evidence-based policy development is a worthy goal, it must take into account the intrinsic complexity of SWM provision and limitations in the manner in which evidence can inform policy.
Unfortunately, many decision makers have defined rigid randomized controlled trials with a large number of participants as the predominantly acceptable methodology for determining the effectiveness and medical necessity of SWM. People with disabilities are a relatively small group with heterogeneous characteristics and, frequently, multiple diagnoses and comorbidities.7 Their needs depend on their unique physical, mental, and sensory functions; their support system including family, friends, and caregivers; their roles, responsibilities, and daily activities; and the specific physical environments they routinely encounter. Furthermore, SWM can be provided in endless permutations, configurations, and customizations. Finally, the intrinsic complexity of SWM and its provision creates methodological barriers to blinding, establishing control groups, and preferred sample size in required methodologies. Because of the payers' insistence on a scientific methodology that is unrealistic for the application, long-accepted standards of medical practice are being ignored. This has resulted in barriers to consumer access to medically necessary devices.
Existing scientific evidence has implication across populations.8-10 In their research review, Requejo et al present the currently available evidence and recommendations for preserving function and mobility for elderly and aging individuals who use manual wheelchairs. In addition, this issue contributes to the SWM body of literature by presenting additional scientific evidence related to environmental barriers, provision of appropriate wheelchair skills training, and the effects of sitting on a mechanical lift sling on seated interface pressure. Harris et al build on past research that has examined barriers specific to wheelchair use to capture a more comprehensive understanding of those obstacles wheelchair users, especially the elderly, routinely encounter as they move through their communities. Smith and Kirby studied the need and feasibility of the Wheelchair Skills Training Program with respect to 4 manual wheelchair users in a long-term care setting. Kirby et al examined the characteristics of wheelchair skills training received during an inpatient stay at a rehabilitation center in efforts to understand the effectiveness of knowledge translation efforts. Finally, Crane et al characterized the seat interface pressure of older adult wheelchair users sitting with and without a mechanical lift sling.
FUTURE
People with disabilities are affected disproportionately by barriers to health care. Action is required where existing research reveals the clear need for such strategies as greater clinical research, enhanced health care provider education, enhanced payment systems, and the removal of policy and procedural barriers and other physical barriers to receiving quality health care services.
The articles in this special edition identify some key issues that require future research. I hope this edition will help provide clinicians, researchers, policy makers, and advocates a basis for action among stakeholders eager to improve access to quality SWM technologies and services for elderly and aging individuals with mobility impairments. I also would like to offer my sincere gratitude to all the authors who contributed their time and knowledge to this effort.
-Laura Cohen, PhD, PT, ATP/SMS
Guest Editor
Rehabilitation & Technology Consultants, LLC
Arlington, Virginia
[email protected]
References