Appendix. Disability Primer
Definition of Disability and Goals of Rehabilitation
The Rehabilitation Act of 1973, as amended, defines an individual with a disability as
any person who (i) has a physical or mental impairment which substantially limits one or more of such person's major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment.
The impairments that lead to a limitation in life activities may stem from one or more of genetic conditions, acquired diseases, traumas, and aging. More recently, the "new paradigm" set forth by NIDRR characterizes disability as a product of an interaction between characteristics of the individual and characteristics of the natural, built, cultural, and social environments. The new paradigm defines a disabled person as an individual with an impairment who requires an accommodation to perform functions required to carry out life activities.94 This paradigm is indicative of trends towards viewing the disabled individual in his or her larger social context.
The World Health Organization developed the International Classification of Impairment, Disability, and Handicap (ICIDH) in 1980 to provide a framework and definition of illness and rehabilitation for the organization of information about the consequences of disease. Disability and handicap stem from underlying impairments and disease states, and rehabilitation interventions may be targeted at any of these different levels of patient need. The ICIDH is being revised as the International Classification of Functioning, Disability, and Health (ICIDH-2). The ICIDH-2 final draft includes psychosocial aspects of disability and the impact of environmental factors. WHO's model of the current understanding of interactions between the components of ICIDH-2 is presented in Appendix Figure 1. A goal of the ICIDH-2 is to provide the conceptual basis necessary to foster consistent communication among researchers, providers, and payers within the rehabilitation field; it also has been discussed as a basis for outcomes measures.95 The ICIDH-2 is discussed in the rehabilitation literature, but it has not been consistently used to conceptualize the literature in the field.
Defining a single model of rehabilitation care is challenging because of the variety of medical specialties and range of patient needs involved. The WHO classification system provides a starting point for most models. Wade and de Jong have proposed the following classification, which overlaps with the Institute of Medicine's 1991 revision of the WHO classification.96
- Level of impairment: Impairment is an abnormality in structure or function at the organ system resulting from an underlying disease process, i.e., changes in a person. Interventions targeted to the level of impairment include equipment to increase functioning, patient or caregiver behavior to increase functioning, or surgery to improve structure.
- Level of disability: Disability is a restriction or lack of ability to perform an activity in a normal manner resulting from an impairment, i.e., changes in a person's behavior or interaction with the environment. Interventions targeted to the level of disability include retraining to achieve a goal using new methods (including equipment), or altering the personal or physical environment. The presence of multiple diseases or impairments in an individual can have a greater than additive effect on the risk for disability.
- Level of handicap: Handicap is a disadvantage resulting from impairment or disability that limits or prevents acting in a normal role in society, i.e., changes in the person's social role functioning. Interventions address the quality and quantity of social role functioning by increasing the patient's behavioral repertoire, and through increasing opportunities for social interaction, e.g., through transport.
According to Hoenig et al.,7 the assessment of disabilities should:
- Characterize the disability.
- Identify causal impairments.
- Determine underlying diseases.
- Discover contributing factors.
This is a holistic approach that considers social support, attitude, finances, environment, and education. The rehabilitation plan is then based on the nature of the disability and the underlying conditions. In addition, Kramer proposes assessing rehabilitation services in a way that is more inclusive of the patient's perspective.97 This includes specifying the system of care, services, and staff, which overlap with the structure and processes of care discussed above in the WHO classification. However, Kramer incorporates the individual's and family's decision processes. This approach is applied primarily to rehabilitation subsequent to acute care episodes while incorporating assessment across a variety of sites including inpatient, outpatient, and home care.
Because of the wide range of disability and types of intervention, there is little focus on, or consensus about, the definition and goals of rehabilitation across fields. For example, rehabilitation services can include medical or surgical therapy, environmental measures, or social and financial support services. The goals of individual programs and interventions vary with type of disability as well as with individual patient plans.9 While short-term goals of rehabilitation for specific conditions may differ, the field of rehabilitation encompasses common long-term goals. These include maximizing the full social integration and inclusion of the individual in the community, employment or other productive activity, and independent living of individuals of all ages with disabilities, as well as life satisfaction.94 Goals may also include minimizing the patient's pain and distress, as well as the distress and stress on the patient's family and caregivers. In addition, a longstanding goal of rehabilitation has been and continues to be self-sufficiency through employment.
An estimated 54 millions Americans are disabled.1 The prevalence of disability is increasing with the aging of the Nation's population. Disabilities are disproportionately concentrated in populations that are low-income, that lack access to state-of-the-art prevention tactics or interventions, and that are exposed to additional external or lifestyle risk factors. Racial, linguistic, and cultural minorities are more likely to live in poverty and lack access to health care and health information, and have more exposure to interpersonal violence and intentional injury that may result in disability.
Physical, social, and environmental factors create barriers to routine care for people with disabilities. These include, among other things, inadequate training and evaluation resources, insufficient referrals, lack of transportation options, remoteness of secondary and tertiary facilities, lack of financial resources, and absence of current information on disabilities.10 Providers often are poorly equipped to accommodate people with disabilities (i.e., they lack adaptive technologies for examination equipment) and primary care providers are often uneducated about the needs of the disabled and fail to make appropriate referrals.98 In addition, providers may tend to focus on the disability and overlook preventive and health maintenance care for their patients.88 Primary care providers need special training to better prepare them to identify, treat, and refer people with disabilities.10 Finally, in rural or other low-density areas where rates of disability are higher, there is frequently only one or a limited range of rehabilitation providers, restricting consumer choice.
Types of Interventions
The selection of rehabilitation services depends on the nature and conditions of the disability.7 Appendix Table 1 lists the National Institute for Disability and Rehabilitation Research (NIDRR) strategy, method, and source of intervention to address disability in the "new paradigm."
Appendix Table 1. NIDRR's New Paradigm
|Strategy to Address Disability:||Remove barriers, create access through accommodation and universal design, promote wellness and health|
|Method to Address Disability:||Provision of supports, e.g., assistive technology, personal assistance services, job coach|
|Source of Intervention:||Peers, mainstream service providers, consumer information services|
Source: Adapted from National Center for the Dissemination of Disability Research, Overview of NIDRR's Long-Range Plan94 (full report available at: www.ncddr.org/new/announcements/nidrr_lrp/index.html).
Technical innovations have enormous potential for enhancing the lives of individuals with disabilities. Examples of personal functions that could benefit significantly from new technology include resting, toileting and grooming, dressing, sitting and mobility, preparing food, controlling the home environment, communicating, ensuring mobility in the community, taking long journeys, working, and recreation.99 However, most advances in rehabilitation have occurred in service delivery as opposed to new technology or single treatments.8 For example, there is an increasing focus on multidisciplinary service delivery and services that are more inclusive of the individual's particular needs in care planning. This includes assessment and consideration of economic and cultural social context, family and social relationships, and access to services. Improving access to care for people with disabilities and incorporating services that address psychosocial issues of disability remain at the forefront of changes in the field of rehabilitation.
There is an increasing recognition of the need to evaluate service delivery and outcomes from the perspectives of payers, providers, and clients. The delivery of rehabilitation services has been affected by the general shift in health care payment from retrospective fee-for-service payment to prospective capitated payment. There is greater demand for demonstrating the effectiveness and cost-effectiveness of rehabilitative technologies.9 In particular, there is an increasing emphasis on assessing the costs and outcomes of rehabilitation from the perspective of rehabilitation service providers and third-party payers. Outcomes would include not just an improvement in ADL skill levels, but also some measure of how improved ADL skills will translate into social and economic benefits.19
Models of Rehabilitation Delivery
Models of delivery refer to the settings, providers, and methods of reimbursement that enable services to be delivered to the patient. Today, there is a growing demand for rehabilitation services, due primarily to the aging of the population, increased emphasis on chronic disease and disability, and increased options for intervention. To satisfy this demand, there likewise has been an increase in the number of some types of providers of rehabilitation services and an increase in the provision of services in skilled nursing facilities, the home, and other ambulatory settings. As discussed above, there is also a trend from fee-for-service to capitated, or risk, payment.6
Most rehabilitation programs employ a multidisciplinary approach to address cognitive, emotional, and family issues in addition to mobility and self-care. A meta-analysis comparing inpatient multidisciplinary rehabilitation services with usual medical care indicated the following:100
- Rehabilitation services were significantly associated with better rates of survival and improved function during hospitalization, although these differences were not significant at followup.
- Rehabilitation services were significantly associated with increased rates of patients' return to and stay at home.
- There were no significant differences between rehabilitation services and usual medical care in long-term survival or functioning outcomes.
Multimodal interventions have been shown to be more effective for some conditions, for example, for prevention of falls among geriatric patients.101 Rehabilitation must consider social and environmental influences; further, they should account for the inevitable interaction of multiple diseases and impairments, particularly among older adults.
The following sections describe rehabilitation across a variety of characteristics, including settings of care and processes of payment.
- General acute hospital: Compared to other settings, general acute hospitals tend to have a greater emphasis on medical care and less emphasis on custodial care. Rehabilitation efforts in this setting usually occur subsequent to an acute event (e.g., stroke), not as a response to a chronic condition (e.g., vision impairment). Because of the high costs and prevalence of prospective payment systems for inpatient care, rehabilitation services provided in this setting are likely to be subject to cost-effectiveness scrutiny.
- Subacute rehabilitation hospital or residential nursing home: Rehabilitation services may be provided in residential nursing homes, particularly when rehabilitation involves medical and custodial care that is not easily delivered in a home setting, or when the patient does not have a caregiver able to provide rehabilitation in a home setting. Given the prevalence of multiple interactive disabilities among the elderly, residential nursing homes are important avenues recognizing disabilities that may be secondary to the primary reason for admission.
There is little evidence regarding the relative effectiveness of inpatient versus outpatient rehabilitation. One study found that general hospital inpatients received more treatment than patients in skilled nursing facilities.102 In some cases, functional outcomes have been shown to be worse when care is provided in skilled nursing facilities.103 A randomized clinical trial reported by Evans et al. (1997) found no significant treatment effect for inpatient rehabilitation compared to outpatient followup with usual medical services but no rehabilitation therapies.104 The study included 85 patients with various nervous, circulatory, musculoskeletal, and injury conditions. This study also found that inpatient rehabilitative care does not have lasting benefits, and was more expensive than usual medical services.
- Provider office: Rehabilitation services may be provided in the office of a provider who may or may not specialize in the area of the patient's disability.
- Community-based: Community-based services have the advantage of providing social group support. Community-based rehabilitation would include activities to promote normal development, training of clients in self-care and mobility, and language and speech training.105
- Home care: Rehabilitation services provided in the home emphasize environmental and behavioral modifications to increase independent functioning. Home care facilitates the consideration of individual psychosocial and familial factors in service provision. Rehabilitation services often include physical environmental changes made to the home. Emerging technologies such as the "Smart Houses" discussed above have the potential to support rehabilitation at home.106
Payment and Access
Access to rehabilitation services and other care for people with disabilities is of increasing concern given ongoing cost-containment pressures and the traditional emphasis in health care delivery on acute care services.
- Managed Care: Several main aspects of rehabilitation services present fiscal risks to capitated health care plans, and thereby provide disincentives for improving access to these services. Among these are that disabled persons tend to be higher users of health care services, encounters with disabled patients tend to be more time consuming than most other types of visits, and it is difficult to determine accurate risk-adjustments for disabled populations. The greater financial risk posed by offering rehabilitation services to disabled populations raises the stakes for demonstrating improved functional and health outcomes and cost-effectiveness in rehabilitation.
HEDIS, the health plan "report card" intended to assist employers in selecting managed care includes measures of functioning. While capitated plans would appear to have greater disincentives to provide rehabilitation services than fee-for-service plans, actual differences are not well documented. For example, a survey of 258 people with a variety of disabilities in Massachusetts found no significant differences between their ratings of fee-for-service and managed care plans and providers.107 Important to patients were appointment availability, accessibility of physician offices, and physician understanding of their disabilities.
- Industry Consolidation: Corporate consolidation of inpatient rehabilitation services poses opportunities and threats to access. It is an opportunity in that it may offer economies of scale in products and services, standardization, and quality control. It is a threat in that it could ultimately result in diminished services in areas, such as rural areas, that are less profitable.
- Payer Status: Publicly paid rehabilitation services have eligibility specifications based upon clinical diagnoses. It is unclear whether eligibility standards result in over- or under-inclusiveness. In addition, the literature indicates that eligibility for Social Security Administration (SSA) and Social Security Disability Insurance (SSDI) programs may present work disincentives by discouraging individuals from seeking employment for fear of losing income-based benefits.39
States rely heavily on Rehabilitation Act funds for rehabilitation services. In 1995, average expenditures of Rehabilitation Act programs on low vision devices were $73 per consumer.34
Private health insurance generally offers better benefits for assistive technologies. However, private-pay services may have limited financial and geographical access.