To be healthy does not mean to be free of disease; it means that you can function, do what you want to do, and become what you want to become.
––Rene Jules Dubos
1901 - 1982
Overview
Maximizing health and function is critical to maintaining independence for people with disabilities. Health care for people with disabilities encompasses access to care for routine health problems, participation in health promotion and wellness activities, and access to appropriate specialty care, including medical rehabilitation. Medical rehabilitation is the systematic application of modalities, therapies, and techniques to restore, improve, or replace impaired human functioning. It also encompasses biomedical engineering, that is, the use of engineering principles and techniques and biological knowledge to advance the functional ability of people with disabilities.
Health care and medical rehabilitation services operate largely within the constraints imposed by market forces and government regulations. In recent years, significant changes have occurred in health care delivery and reimbursement. Various forms of managed care have become the predominant mode of organizing and delivering health care in much of the private sector. Medicaid and Medicare also have adopted managed care strategies for providing health care to many recipients. In theory, managed care uses case coordination to contain costs by limiting access to what the managed care company considers unnecessary health care, particularly specialty services and hospitalization. Individuals with disabilities have expressed concern that managed care approaches may limit their access to medical rehabilitation specialists, goods, and services. In addition to a market-driven shift to managed care, other related changes have occurred, including shortened periods of stay in inpatient rehabilitation facilities and the emergence of subacute rehabilitation providers. Considerable consolidation also has occurred within the medical rehabilitation industry and has further affected the availability and delivery of services. There is a new emphasis on developing performance measures that incorporate quality, functional outcomes, and consumer satisfaction. These measures are being used to guide purchasing and accrediting decisions within the health care system.
During the next five years, NIDRR plans to fund research in a number of broad areas that link health status and functional outcomes to health care and medical rehabilitation. In addition, NIDRR will support research to continue development of new treatments and delivery mechanisms to meet the rehabilitation, functional restoration, and health maintenance needs of individuals with disabilities. This research will occur at the individual and the delivery system levels. In this section, the discussion of general health care and medical rehabilitation will address issues at both levels.
Health Care
The goal of health care for individuals with disabilities is attaining and maintaining health and decreasing the occurrence of secondary conditions of disability. Individuals with disabilities use more health care services, accumulate more hospital days, and incur higher per capita medical expenditures than do nondisabled people. People with no activity limitations reported approximately four physician contacts per year; this figure doubled for those who had some activity limitation, five times as high for those unable to perform major life activities, and seven times as great for those needing help with instrumental activities of daily living (LaPlante 1993). Understanding the relationship between disability and health has implications for the public health agenda and the application of primary disease prevention strategies to the health of people with disabilities.
In the past, the health needs of people with disabilities often have been conflated with medical rehabilitation needs. The recognition that people with disabilities require routine health care or access to health maintenance and wellness services is relatively new. How best to meet these needs requires substantial new research. At the individual level, people with disabilities need providers and interventions that focus on their overall health, taking disability and environmental factors into consideration. Concern about the health of the whole person is the focus at this level, in recognition that an individual is more than a disability and deserves access to the health services generally available to the nondisabled population. At the systems level, the study of the organization and financing of health services must include an analysis of the impacts on people with disabilities. Ameliorating the primary condition, preventing secondary conditions and co-morbidities, maximizing independence and community integration, and examining the impact of physical barriers and societal attitudes on access to health and medical rehabilitation services are critical issues at each level of focus.
Health Care at the Individual Level
Although people with disabilities have higher health care utilization rates than the general population, having a disability does not mean that a person is ill. People with disabilities increasingly are demanding information about and access to programs and services aimed at promoting their overall health, including access to routine health care, preventive care, and wellness activities. This includes primary care and, for women, access to gynecological care. For children, this means access to appropriate pediatric care. In clinical settings, these demands require development of disability-sensitive protocols for proper nutrition, exercise, health screening, and treatment of nondisability-related illnesses and conditions. NIDRR is committed to supporting research to improve the overall health of people with disabilities.
Health Care at the Systems Level
People with disabilities must have access to, and be satisfied with, an integrated continuum of health care services, including primary care and health maintenance services, specialty care, medical rehabilitation, long-term care, and health promotion programs. Models for organizing, delivering, and financing these services must accommodate an overall health care system that is undergoing tremendous change. Issues of gatekeeper roles, carve-outs, risk-adjusted rate-setting, and service mix are factors for assessment in a context of managed care approaches that balance care coordination with cost control strategies. At issue for all people is whether cost control strategies result in barriers to needed care, and for people with disabilities, whether access to specialty care, particularly medical rehabilitation services, is limited. In the current cost-cutting and restrictive climate, it is important that new service configurations preserve equity for people with disabilities by providing for their unique needs.
Medical Rehabilitation
Medical rehabilitation addresses both the primary disability and secondary conditions evolving from the initial impairment or disability. Medical rehabilitation also teaches the individual to overcome barriers in the environment. Medical rehabilitation includes medical and bioengineering interventions, therapeutic modalities, and community and family interventions.
Medical rehabilitation frequently is associated with physical disabilities such as musculoskeletal or neuromuscular impairments or limitations in mobility or manipulation. However, medical rehabilitation also provides interventions to improve or manage sensory, cognitive, and mental health functioning, pain, or fatigue, and includes rehabilitation dentistry and maxillofacial prosthodontics. Specialists and allied health personnel from a broad range of disciplines may be involved in the provision of medical rehabilitation services.
Medical Rehabilitation at the Individual Level
NIDRR-funded research has improved medical rehabilitation treatment in areas such as spinal cord injury, traumatic brain injury, stroke, and other leading causes of disability. NIDRR will expand this research to include emerging disabilities. Of special concern are new causes of disability such as violence, which has emerged in recent years as a significant precipitator for new disability conditions. In addition, future medical rehabilitation research must be sensitive to cultural differences and must recognize the impact of an individual’s environment on functional outcomes. Another important research focus will be examining how technological improvements enhance the ability of biomedical engineering to help people with disabilities regain, maintain, or replace functional ability.
Additionally, an urgent need exists for the development of more effective outcomes measurement tools to test the usefulness of new medical rehabilitation interventions and products. These measurement tools must assess the individual’s response to medical rehabilitation interventions and account for technology that enhances mobility, independence, and quality of life. Outcomes must be measured not just for the duration of treatment but also over the long-term.
The prevention and treatment of secondary conditions are a significant challenge to the medical rehabilitation field. Secondary conditions result directly from the primary disabling condition and may have significant effects on the health and function of people with disabilities. Examples of secondary conditions may include depression, bladder and skin problems, respiratory problems, chronic pain, contractures or spasticity, fatigue, joint deterioration, or memory loss. Other health conditions such as cardiac problems, autoimmune diseases, obesity, or cancer may not always derive directly from the original disability, but may require special preventive efforts or care interventions because of a preexisting disability.
Medical Rehabilitation at the Systems Level
Cost containment strategies inherent in managed care may limit access to medical rehabilitation. Thus, it is more important than ever to demonstrate the cost effectiveness of treatments. Research on medical rehabilitation outcomes is critical to establishing the need for, and assuring access to, medical rehabilitation within the health care delivery system.
NIDRR has initiated research activities to develop methods for measuring function and assessing rehabilitation outcomes, and for measuring the cost and effectiveness of various rehabilitation modalities and delivery mechanisms. These areas will continue to be important foci of NIDRR’s future medical research program. Researchers must continue to assess the impact of changes at the systems level on the rehabilitation outcomes of individuals. In addition, providing care in nonacute settings requires developing additional capacity, such as training practitioners for more independent work in the community. NIDRR research must contribute to building this new capacity.
The purposes of NIDRR’s research in the area of health care and medical rehabilitation are to:
- identify and evaluate effective models of health care for people with disabilities;
- develop models to promote health and wellness for people with disabilities;
- examine the impact of changes in the health care delivery system on access to care;
- evaluate medical rehabilitation interventions that maximize physical, cognitive, sensory, and emotional functioning for individuals with disabilities, taking into account aging, environment, emerging disabilities, and changes in the health services delivery system;
- identify and evaluate medical rehabilitation interventions that will help disabled individuals maintain health, through prevention and amelioration of secondary conditions and co-morbidities and through education;
- improve delivery of medical rehabilitation services to people with disabilities; and
- evaluate the health and medical rehabilitation needs of people whose impairments are attributed to newly recognized causes or whose conditions are becoming recognized as disabilities. Examples include a disability resulting from interpersonal violence and emergent chronic diseases such as childhood asthma or chronic fatigue immune deficiency syndrome.
Future Research Priorities for Health Care and Medical Rehabilitation
Research on Effective Methods of Providing a Continuum of Care, Including Primary Care and Long-Term Care, to Persons with Disabilities. In recent years, a number of different models of providing routine health care for people with disabilities have emerged. For example, medical rehabilitation programs have developed primary care clinics; and there are other programs where primary care providers have added medical rehabilitation consultants to advise them on the care of people with disabilities. The efficacy of these models is not yet known, especially their impact on the overall well-being of consumers.
There has been some research on long-term care models, especially those that provide community-based services, including personal assistance; however, research questions remain regarding optimal models of long-term care. Specific priorities include:
- identification of effective models of primary and long-term care across disability populations including emerging disability groups;
- evaluation of the impact of primary and long-term care service delivery models on independence, community integration, and overall health outcomes, including occurrence of secondary conditions and co-morbidities; and
- collection and analysis of longitudinal data on health care utilization by people with disabilities to identify trends, outcomes, and consumer satisfaction.
Research on Application of Wellness and Health Promotion Strategies. NIDRR will support research to develop wellness and health promotion strategies, incorporating all disability types and all age groups. Specific research priorities include:
- identification and evaluation of models to promote health and wellness for people with disabilities in mainstream settings where possible. These include nutrition, exercise, disease prevention, and other health promotion strategies. NIDRR will place a particular focus on prevention and treatment of secondary conditions, such as pressure sores, and on the needs of emerging disability populations, including people aging with a disability;
- evaluation of the impact of health status on independence, community integration, quality of life, and health care expenditures; and
- development of guidelines that establish protocols for reaching or maintaining appropriate levels of fitness for people with varying functional abilities.
Research on the Impact of the Evolving Health Service Delivery System on Access to Health and Medical Rehabilitation Services. NIDRR anticipates that the health service delivery system will continue to evolve as the marketplace responds to rising costs and as policy-makers respond to public concerns about access to care. Specific research priorities include:
- evaluation of the impact of changes at the health system level (e.g., financing and regulatory changes) and on access to the continuum of health care services (e.g., medical rehabilitation); and
- evaluation of the impact of triage and case management strategies on health status and rehabilitation outcomes.
Research on Trauma Rehabilitation. Research to improve the restoration and successful community living of individuals with burns and neurotrauma, such as spinal cord injury, brain injury, and stroke, has long been an important component of NIDRR’s program. Specific research priorities include:
- identification of methods to minimize neurological damage, improve behavioral outcomes, and enhance cognitive abilities; and
- identification of effective collaborative research opportunities, including those using data generated by the model systems.
Research on Progressive and Degenerative Disease Rehabilitation. Research to maintain and restore function and independent lifestyles for individuals with multiple sclerosis, arthritis, and a neuromuscular disease is a key element of medical rehabilitation research. Specific research priorities include:
- identification and evaluation of methods to maintain function for people with these conditions;
- identification of effective health promotion strategies;
- evaluation of strategies to minimize the impact of secondary conditions; and
- development and evaluation of health care and rehabilitation medicine supports to facilitate community integration and independent living outcomes.
Research on Birth Anomalies and Sequelae of Diseases and Injuries. Medical and technological interventions to maintain and restore function in people with cerebral palsy, spina bifida, post-polio syndrome, and other long-standing conditions are an important part of rehabilitation. Specific research priorities include:
- development and evaluation of physical therapy techniques, respiratory management techniques, exercise regimens, and other rehabilitative interventions aimed at maximizing functional independence;
- development and evaluation of supports to facilitate community integration and independent living outcomes; and
- investigation of factors that lead to disability and loss of full participation in society following disease or injury.
Research on Secondary Conditions. Preventing and treating secondary conditions are critical to preserving health and containing the health care costs of people with disabilities. Specific research priorities include:
- development of clinical guidelines to identify at-risk individuals and to involve consumers in regimens to prevent secondary conditions;
- identification and evaluation of methods of preventing and treating secondary conditions across impairment categories; and
- investigation of the interaction among secondary conditions, impairments, and aging.
Research on Emergent Disabilities. Explorations of the impact of disabilities resulting from new causes or expanded disability definitions will be increasingly significant to rehabilitation medicine. Emergent conditions may include such things as environmental illnesses, repetitive motion syndromes, autoimmune deficiencies, and psychosocial and behavioral conditions related to poverty and violence. Specific research priorities include:
- identification and evaluation of the need for health and medical rehabilitation services to address emerging disability conditions;
- identification and evaluation of effective models that health and medical rehabilitation providers can use to meet the needs of people with emerging disabilities; and
- development of models to predict future emerging disability populations.
Research on Aging with a Disability. Advances in acute medical care for people with disabilities means that, as the population ages, many disabled people will live longer and may develop the serious, chronic conditions common to many aging populations. Examples of such conditions include heart disease, diabetes, cancer, pulmonary diseases, arthritis, and sensory losses. Specific research priorities include:
- determination of the implications of aging with a disability on access to routine health care, medical rehabilitation services, and services that support community integration;
- investigation of the impact of aging on disabilities and of disabilities on aging;
- investigation of the relationship between age-related disability and employment; and
- analysis of the effect of a longer lifespan on the durability and effectiveness of previously demonstrated interventions and technologies.
Research on Rehabilitation Outcomes. NIDRR’s prior research efforts have developed new rehabilitation techniques for a number of disability groupings and also have developed and tested comprehensive model systems, home and community-based services, and peer services to improve rehabilitation outcomes. With the renewed emphasis on performance and outcomes and with increasing economic constraints generated by changes in the health services delivery system, rehabilitation medicine needs to document the impact of its services. Specific research priorities include:
- expansion of outcomes evaluation approaches, beyond short-term rehabilitation studies, to include outpatient and long-term follow-up information;
- development of outcomes measures that include measures of environmental barriers;
- evaluation of methods that translate outcomes findings into quality improvement strategies;
- analysis of barriers and incentives to consistent use of health and medical rehabilitation outcomes measures in payer-driven and consumer choice service models; and
- refinement of measures of rehabilitation effectiveness.
Research on Changes in the Medical Rehabilitation Industry. The medical rehabilitation industry is undergoing an unprecedented level of consolidation, with unknown consequences for access and flexibility. The industry has undergone significant changes in service sites with the move from inpatient to post-acute, outpatient, and community-based services. Outcomes measurement and quality assurance initiatives are increasingly used in evaluating medical rehabilitation services. Specific research priorities include:
- investigation of the impact of financing and other market forces on the medical rehabilitation industry, including service delivery patterns and treatment modalities; and
- identification and evaluation of the impact of changes at the medical rehabilitation industry level on access and outcomes for people with disabilities.
A major research challenge will be to integrate research on the efficacy of interventions to improve outcomes with research on the impact of changes in the health care delivery system. A second overarching objective will be to relate medical rehabilitation and health care research to other changes, including the new paradigm of disability, the emerging universe of disability, and participatory research by people with disabilities.
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