Authors: Margaret A. Turk, MD Sravani V. Mudumbi, MD

Health Policy

Affiliations: From the Department of Physical Medicine & Rehabilitation, SUNY Upstate Medical University, Syracuse, New York.

Correspondence: All correspondence and requests for reprints should be addressed to: Margaret A. Turk, MD, Department of Physical Medicine & Rehabilitation, SUNY Upstate Medical University, 750 East Adams St, Syracuse, NY 13210.

Disclosures: Dr Turk has received funding from the World Bank for travel to meetings to participate in presentations regarding the World Report on Disability. Dr Mudumbi has no disclosures. Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.

0894-9115/14/9301(Suppl)-S027/0 American Journal of Physical Medicine & Rehabilitation Copyright * 2013 by Lippincott Williams & Wilkins DOI: 10.1097/PHM.0000000000000018

ANALYSIS

The United States’ Response to the World Report on Disability ABSTRACT Turk MA, Mudumbi SV: The United States’ response to the world report on disability. Am J Phys Med Rehabil 2014;93(Suppl):S27YS35. The 2011 Annual Disability Status Report notes a disability prevalence rate of 12.1% in the United States. People with disabilities of all ages are increasing in prevalence, and the prevalence increases with age. People with disabilities are high users of health care, have less social participation, and have a higher risk for poverty. Although the United States has a robust history of policy and legislation related to disability and rehabilitation, the ratification of the United Nations Conventions on the Rights of People with Disabilities recently failed in the United States Congress. However, in general, the United States is positioned fairly well regarding most aspects of rehabilitation including a strong rehabilitation science providing a sound base for evidence-based practice. Three key areas of further development emerge: education about disability and benefits of rehabilitation to decision makers and administrators who are concerned with the implementation of the Affordable Care Act, advocacy for a more robust organized presence and acknowledgement of rehabilitation science and research, and advocacy for education about disability and rehabilitation for physicians-in-training. Key Words: World Health Organization, Rehabilitation, Persons with Disability, Epidemiology, Policy

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n September 2011, the World Report on Disability (WRD) was released in a ceremony at the United Nations Headquarters, New York City. The announcement that the number of people with disabilities is now estimated to be 1 billion internationally was astounding, and the report’s documentation of the status of health, social supports, and participation levels is a significant contribution to the understanding of disability. Despite the enormity of the report, the possible implications it holds for care delivery for people with disabilities, and the significant work done by multiple authors, there has been little acknowledgement of this report’s importance by the United States government, medical service programs, rehabilitation professional organizations, or the broad disability and rehabilitation science field. However, the United States has a history of acknowledging rehabilitation needs dating to the early 1900s, which was initially based on vocational interests and progressed through the influences of social reforms and advocacy, politics and legislation, war economics and casualties, philanthropy, labor market needs,

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and a burgeoning industry within health care. The organization of United States rehabilitation interventions is a conglomerate of early legislation with recent modifications; financial decisions regarding funding mechanisms, including the medicalization of social support and reform; organizational and professional development of practitioners in the field; scientific advancements in acute care and assistive technologies; and, more recently, financial retrenchment. An overview of the history of rehabilitation in the United States, the present-day system and processes, current issues and future directions, and resources within the United States can be found elsewhere.1

WHAT IS THE PROBLEM? Burden of Disability In the United States, it is recognized that people with special needs require additional support for health and function. To plan for the needs of and support for people with disabilities, surveys that include key questions about disability are required to

monitor the health and well-being of the population, to understand the circumstances facing people with disabilities, and to allow the design of new programs and policies for support. The United States captures disability statistics in a variety of ways, and most of these surveys are databases defined by self-identified conditions or functional limitations. A current review of national disability surveys noted four survey types (national household surveys; surveys on health, disability, aging, and long-term care; surveys on youth, education, and transition; and other surveys), for a total of 40 surveys that capture some elements of disability.2 Not all data can be compared among surveys, and some surveys have been updated or modified and cannot be compared with previous years. There are very few registries (inclusive of all or most people who carry a specific diagnosis) supported in the United States, and some represent rare diseases. Typically the more common disability diagnoses (e.g., stroke, spinal cord injury, traumatic brain injury) are not represented. Population-based disability statistics may be more specific to functional limitations. Table 1 provides

TABLE 1 Examples of commonly used United States surveys providing disability information Survey Instrument American Community Survey

Behavioral Risk Factor Surveillance System Medical Expenditure Panel Survey National Health and Nutrition Examination Survey

National Health Interview Survey

Survey of Income and Program Participation

Description Provides data on demographic, social, economic, and housing characteristics of the United States population. Beginning in 2008, changes have been made to the survey, including six disability-related questions. Samples adults living in households by telephone, one per household. Data are collected on health risk behaviors, preventive health practices, specific diagnoses and disabilities, and healthcare access. Provides information on healthcare use and spending, insurance coverage, and accessibility of health care in the United States. There are three major components: household, insurance, and medical provider. Assesses the health and the nutritional status of adults and children in the United States through interviews and physical examinations. The data determine prevalence of major diseases and risk factors, informs national standards for vital signs measurement, and directs future studies through a relatively small sample size. Monitors the health of the nation (since 1957) through personal household interviews on a broad range of health topics, including type and onset of disability, and including all ages and members of a household. Survey results about prevalence, distribution, effects of illness and disability, and services used have been instrumental in providing data to track health status, healthcare access, and progress toward achieving national health objectives. The NHIS-D was conducted in two phases, beginning in 1994, and included adults and children. The results have provided information to track health status, healthcare access, and progress toward national health goals. The NHIS-D has not been repeated. Not intended to be a health or disability survey but obtains information about federal program participation and describes the income distribution of the population, with a focus on the lower end of that distribution. The information provides background for measurement of existing programs, estimates future costs/coverage, and describes economic well-being.

NHIS-D, National Health Interview Survey on Disability.

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examples of six commonly used federal surveys providing information about disability in the United States. The 2011 Annual Disability Status Report,3 using data from the American Community Survey, notes the following: Disability prevalence (United States population, 307,593,600): Disability across all ages is 12.1% (37,326,100); the lowest is 0.8% in 4 yrs or younger, with gradual progression to 25.6% in 65Y74 yrs and 50.7% in 75 yrs or older. Sex: A total of 11.9% of all males and 12.4% of all females reported a disability. Disability type: Of all Americans, 2.2% have visual disability; 2.7%, self-care disability; 3.4%, hearing disability; 4.9%, cognitive disability; and 6.9%, ambulatory disability; and 5.6% live independently but need assistance doing activities outside the home. A total of 19.1% of working-aged adult civilian veterans had a Veterans’ AdministrationYdetermined service-connected disability. Education: The highest educational attainment of working-aged adults with disabilities was 34.5% with a high school diploma or equivalent, 30.6% with some college or associate’s degree, and 12.5% with a bachelor’s degree or higher. Employment: The employment rate of workingaged adults (ages 21Y64 yrs) with disabilities was 33.4%; employment of those without disability was 75.6%. The highest disability type seeking employment was those with hearing disabilities (14.8%). A total of 20.7% of adults with disabilities had full-time/ full-year employment, and 55.5% of adults without disability were employed full-time/full-year. Financial status: The poverty rate of workingaged adults with disabilities was 27.8%. The poverty rate of people without disability was less than half of those with disabilities (12.4%). A total of 19.6% of working-aged adults with disabilities received supplemental security income. A total of 82.5% of adults 21Y64 yrs old with disabilities had health insurance compared with 78.8% of those without disabilities. These data are just one example of many showing the kind of information that is available to United States policy makers, legislators, provider and service organizations, consumers, and researchers. Although there are a lot of data, there are limited comparisons or lack of specifics, and sampling differences create some unintended biases. These imperfections produce differing use and interpretations of the available data. However, it is clear that people with disabilities of all ages are increasing in prevalence, and the prevalence increases with age. Sensory disabilities are less prevalent and physical www.ajpmr.com

and cognitive disabilities are more prevalent in the United States. People with disabilities are high users of health care, may engage in less healthy behaviors, and require additional supports, and people with disabilities have less social participation and a higher risk for poverty. However, people with disabilities are more likely to have health insurance coverage than Americans without disabilities.

Need for Rehabilitation The delivery of rehabilitation interventions occurs within an administrative structure that does not always result in the most efficient and effective outcomes. Although most rehabilitation needs are or can be met in most regions of the country, there are particular areas of concern for continued support and development of the services, including1 (1) administrative structure and funding streams, (2) organization of health care in a changing environment, (3) limited public understanding of disability and rehabilitation, (4) training professionals about disability, (5) ability to initiate innovative access to rehabilitation, and (6) support for research and evidence-based practice.

WHAT HAS BEEN DONE? Policies and Legislation The United States has a robust history of policy and legislation related to disability and rehabilitation, beginning in the early 1900s, and fundamentally has been shaped by events of the times. Legislation for rehabilitation has its roots in vocational rehabilitation for injured workers and veterans returning from war. Within the United States, legislation is monitored, with legal actions taken by citizens or the federal government to ensure that the legislation is fulfilled. Highlights of policy and legislation are included in Table 2.

Funding Mechanisms in Rehabilitation As noted, funding mechanisms, legislation and policy, and the industry and marketplace have all defined how rehabilitation is provided in the United States. Table 3 identifies the present funding streams for medical rehabilitation services.

Human Resources The United States has promoted and supported the growth and development of rehabilitation professionals since the inception of organized services through the World Wars, with increases related to growth of services based on healthcare legislation. The United States system is based on licensure, which The United States’ Response to the WRD

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TABLE 2 Highlights of legislation and policy in the United States Legislation The Rehabilitation Act and Amendments (Rehab Act)

Technology-Related Assistance for Individuals with Disabilities Act The ADA

Rehabilitation and Education acts

Research and Training legislation

Legislation and policy defining healthcare delivery

Description 1973: cornerstone of disability legislation; focus on those severely impaired, medical support, consumer participation and choice, support for demonstration independent living centers, and support for research Many amendments and reauthorizations: 1978 creates the NIDRR and the NCR Now supports: state vocational systems, research, and training to increase the workforce capacity and competency and advance the science 1988: known as Tech Act; published a formal, legal definition of assistive technology as any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities Definition was also incorporated into the 1998 amendments to the Rehab Act 1990: primary civil rights law related to disability; guaranteed equal access to persons with disabilities and outlawed discrimination on the basis of disability 2008: Amendment Act revised the definition of disability to encompass impairments that substantially limit a major life activity; clarifies that there is coverage of episodic impairments or those in control or remission Legal decisions based on the ADA continue to define and specify its interpretation 1975: Education for All Handicapped Children Act; identified unique needs of students with disabilities, provided special rehabilitation services 1990: renamed the IDEA; entitles a child suspected of having a disability to a comprehensive evaluation by a multidisciplinary team provided, no cost to parents; IEP then developed based on team/parent-determined specific needs 1978: Amendments to the Rehabilitation Act founded one of the three federal agencies for rehabilitation research, the NIDRR; the NIDRR coordinates rehabilitation research efforts across federal agencies through the ICDR 1991: NCMRR established through legislation, created to be the center for medical rehabilitation research and to coordinate rehabilitation research efforts at the NIH; housed within the NICHD and the NIH M/M: created in 1965, rehabilitation services named as covered service; rehabilitation largely financed through M/M; 1977: administration center established, renamed CMS in 2001; mechanisms for payment, changing legislation for control of spending has supported physician education in general, rehabilitation professional education, inpatient rehabilitation unit growth, requirement for rehabilitation physicians as medical directors of programs, increases in home healthcare services, growth of the rehabilitation industry; maintains regulations/standards for all sites of health care, including rehabilitation services, and has moved forward with quality measures for the ACA VA: active duty and veterans of the United States armed services are supported through the Departments of Defense and Veterans Affairs; VA healthcare system was a catalyst for growth/development of rehabilitation in the United States; service delivery is organized by regions, with different levels of service or centers of excellence, with limited provision in rural areas as in the civilian sector; long-term supporter of rehabilitation research and now health informatics and cost-effective quality programs Patient Protection and ACA: enacted 2010, not fully implemented or embraced, lists rehabilitation services and devices as one of ten categories covered by Essential Health Benefits; aimed primarily at increasing number of insured Americans, reducing overall costs, using mandates (unfunded), subsidies, and tax credits through joint state efforts; already initiatedVpromotion of measurement and quality, such as use of electronic medical records (no requirement for compatibility among systems) and reporting of CMS or other funding agency chosen Bquality[ markers, without regard for additional costs; full impact on rehabilitation unclear

ACA, Affordable Care Act; ADA, Americans with Disabilities Act; CMS, Centers for Medicare & Medicaid Services; ICDR, Interagency Committee on Disability Research; IDEA, Individuals with Disabilities Education Act; IEP, Individual Education Program; M/M, Medicare/Medicaid; NCMRR, National Center for Medical Rehabilitation Research; NCR, National Council on Disability; NICHD, National Institute for Child Health and Human Development; NIDRR, National Institute on Disability and Rehabilitation Research; VA, Veterans Administration.

is organized at state levels, and certification, organized through national autonomous bodies, some with previous or loose association with professional

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organizations. Rehabilitation professionals in the United States encompass more than 20 professions, each with its own set of education, certification, and

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TABLE 3 Present funding mechanisms for rehabilitation Funding Source

Eligibility

Private health insurance Medicare (Title XVIII of the Social Security Act)

Medicaid (Title XIX of the Social Security Act) Workers’ compensation programs (state operated) State VR agencies Department of Defense Department of Veterans Affairs

Persons with insurance from employment, self-purchase, or other private source Persons eligible for Old Age Survivor’s Disability Insurance (Social Security) based on worker FICA contributions: 65 yrs or older; Disability Insurance beneficiaries receiving benefits 929 mos SSI recipients, TANF-eligible families, low-income medically needy persons Persons with work-related injury or illness (not self-employed) Persons accepted for services under a federally approved state VR plan Full coverage for service-connected injuries of active-duty military; insurance plan for nonservice-connected and family member treatments Veterans (discharged from military, some benefits require service-connected disability)

FICA, Federal Insurance Contributions Act; SSI, Supplemental Security Income; TANF, Temporary Assistance for Needy Families; VR, vocational rehabilitation. From Turk MA, Mudrick NR: Rehabilitation interventions, in Albrecht GL (ed): SAGE Reference Series on Disability: Key Issues and Future Directions, Vol. 6. Copyright 2013 by Sage Publications Inc. Reprinted with Permission.

licensure requirements.1 However, there are home care workers, direct staff workers, and personal care assistants, often not licensed and not well trained or supported, who often provide the bulk of support in the home and community programs. The Brain Injury Association developed the Academy of Certified Brain Injury Specialists in 1996, to educate and train those who work in brain injury services, licensed and unlicensed, to become certified as a brain injury specialist. United States health care has professionals’ availability requirements for types of services based on site of service (Table 4). Since the 1990s, rehabilitation professions have increased education requirements and achievements to be licensed and accepted some elements of subspecialization. Physicians are now required to maintain their certification and keep their licensure current. Therapists have successfully lobbied for more autonomy from physician prescription in some states. However, with all of this advancement and progress come increasing costs for care. Direct care workers, often the lowest paid and least trained and supported staff, either provide most of the support in a home or community program or are unable to work in other settings because of licensure or other regulation. There are limited statistics regarding numbers and distributions of rehabilitation professionals. However, the United States is well positioned with capacity, especially in urban areas. What data are present note less availability in more rural areas, www.ajpmr.com

although per-capita data were not found4,5 (American Board of Physical Medicine & Rehabilitation, personal communication, March 17, 2013). In general, physical therapists are more available than occupational therapists or speech and language pathologists. Rehabilitation psychologists and neuropsychologists are also in lower supply. Physiatrists are a middlesized medical specialist group, typically with more young practitioners than other specialties and with present preferences for outpatient musculoskeletal practices. They are less available in rural areas.

Service Delivery Funding, legislation, the rehabilitation industry, and the marketplace have shaped the present delivery of rehabilitation services in the United States. Table 4 lists the sites of service with descriptions. The level of care and service delivery is defined by the disability condition, the types and number of services provided, and the patients’ abilities to participate and benefit, as directed by Centers for Medicare and Medicaid Services (CMS) and acceded by private insurance carriers.

Affordable Technology Technology comprises a major sector of United States economic activity, and investment in rehabilitation engineering has yielded many cleverly designed devices, some developed and others adopted for rehabilitation use. Innovative hardware and software have particular application in rehabilitation, The United States’ Response to the WRD

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TABLE 4 Types of service delivery for rehabilitation interventions Service Type Therapy during acute hospital admission; CMS designation

Acute rehabilitation; CMS designation: IRF

Setting Acute hospital, with patient having some medical stability; rehabilitation is not the primary service; often helps to determine level of rehabilitation service required Rehabilitation unit in an acute care hospital or an acute rehabilitation facility located in a freestanding rehabilitation hospital

Subacute rehabilitation; CMS designation: SNF

Subacute rehabilitation unit within an SNF or other healthcare facility

Home health care; CMS designation: HHA

Home

Day rehabilitation; CMS designation: CORF

Facility-based outpatient clinics, often adjacent to inpatient service

Outpatient rehabilitation; CMS designation: outpatient rehabilitation or CORF

Hospital-based outpatient clinics or freestanding outpatient clinics

Nursing home rehabilitation; CMS designation: SNF

Within an SNF

Services PT, OT, ST, and case management most common; rehabilitation physician usually consulted; multidisciplinary; patient tolerance Coordinated interdisciplinary services; PT, OT, ST, therapeutic recreation, social work, case manager, psychology services, and other services as needed Rehabilitation physicians 24/7 acute care, coordinate team process; 24-hr nursing care on site, with high ratio of nursing staff to patient At least 3 hrs of therapy per day, 5Y7 days per week; at least two different therapies required Interdisciplinary services; PT, OT, ST; may have other additional services as needed Physicians available 24/7, less patient care; 24-hr nursing care, less staff 1Y3 hrs of therapy per day, 1Y7 days per week; one or more therapies required PT, OT, ST; multidisciplinary Physician orders, signs off Nursing visits as needed, 1Y7 days per week 1Y2 hrs of therapy per day, 1Y3 days per week Typical therapy services; usually interdisciplinary Physician/nursing depends on program and individual needs 3Y5 hrs of activity per day, 3Y5 days per week PT, OT, ST, psychology services; usually multidisciplinary Physician required to prescribe in most states; no required nursing 1Y3 hrs of therapy per day, 2Y3 days per week Depends on nursing home; provision of various rehabilitation services Physician/nursing regulated by state long-term care programs 1Y3 days per week, depending on individual’s needs/tolerance; at least one therapy

CORF, Comprehensive Outpatient Rehabilitation Facility; HHA, Home Health Agency; IRF, inpatient rehabilitation facility; OT, occupational therapy; PT, physical therapy; SNF, skilled nursing facility; ST, speech and language therapy. From Turk MA, Mudrick NR: Rehabilitation interventions, in Albrecht GL (ed): SAGE Reference Series on Disability: Key Issues and Future Directions, Vol. 6. Copyright 2013 by Sage Publications Inc. Reprinted with Permission.

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although cost remains a factor for most. Although high technology is now common within United States rehabilitation centers (e.g., use of robotics, new prosthetic devices) and there is exciting new research regarding central control for limb movements, light technology assistive devices are more generally sought because of cost and ease of use. High demand for simple, easily customizable tools and, thus, the mass production of these have allowed affordable elimination of barriers in the home, at the workplace, in the transportation, and in the community. Computer technology that was once considered out of reach is now becoming more accessible to the public through cost reductions in fabrication and development, legislated funding mechanisms, and more intuitive or accessible programs. Computers are now more commonly a part of United States households in general. Despite progress with United States legislation supporting access to technology for people with disabilities, not all insurance plans will cover devices, orthotics, prosthetics, or home modifications. In addition, pediatric devices often cannot be used long-term because of growth and development factors; appropriately sized or Bgrowing[ devices are not available.

Research and Evidence-Based Practice United States rehabilitation research and science have benefited from policy and legislation. The Institute of Medicine has developed three important reports.6Y8 All three reports recommended improved support for and coordination of rehabilitation research, reduction of barriers to health care for people with disabilities, and development of public and professional education about disability. Although individuals within agencies support these activities, there is no evidence that the decision makers have acknowledged these recommendations. As has been the case for all biomedical research in the United States, funding has decreased substantially since the beginning of the 21st century. Rehabilitation funding support has always been low in comparison with other fields,6Y8 and it remains low and somewhat precarious. Two of the agencies, the National Institute on Disability and Rehabilitation Research and the National Center for Medical Rehabilitation Research, were developed with legislation, and the third, the National Centers for Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, required lobbying by influential members of Congress. The Veterans Administration Office on Research and Development exclusively funds research in Veterans www.ajpmr.com

Affairs facilities and has a strong history of rehabilitation and disability research. Presently, the National Center for Medical Rehabilitation Research is undergoing review, and an appointed Bblue ribbon panel[ provided comments and recommendations. There has been no positive action yet related to the report. Many rehabilitation research projects or articles continue to be descriptive of health and life courses of disability conditions, which is typical of biomedical research. Lack of surveillance tools or registries makes it difficult (but not impossible) to move beyond this to randomized controlled intervention trials because of the diversity of disability types. Research on quality-of-life or participation does not fit well within National Institutes of Health (NIH) models. However, new research methods are promising: single-subject designs provide within-subject comparisons of interventions, practice-based evidence has been better able to quantify the heterogeneity of rehabilitation services9 and offers an opportunity for comparative effectiveness research, and metaanalysis and systematic or systematized literature reviews can provide a basis for quantifying existing research. Practice-based evidence, comparative effectiveness research, and reviews can all contribute to evidence-based practice. Industry-supported research through clinical trials has been effectively used to evaluate effectiveness of single interventions such as botulinum toxin injections for spasticity management and use of functional electrical stimulation for gait.

WHAT SHOULD BE DONE? Policies and Legislation Although the United States is a leader in recognition of disability issues and the civil rights of people with disabilities and in monitoring the effective use of those laws, the government has not ratified the United Nations Conventions on the Rights of People with Disabilities. In fact, the ratification of the United Nations Conventions on the Rights of People with Disabilities has failed in Congress. Among the concerns expressed are unfunded mandates and the usurpation of the rights and roles of parents of children with disabilities. Better organization, education of constituencies, and lobbying efforts are required before the United Nations Conventions on the Rights of People with Disabilities can be brought to the Congress again. Most, but not all, of this legislation is already a part of the existing legislation. In the meantime, continued efforts in monitoring the Americans with Disabilities Act are ongoing. Although the Department of Justice The United States’ Response to the WRD

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has developed Americans with Disabilities Act guidelines for accessible healthcare facilities and services for people with disabilities, there have been few actions related to this. The United States is adopting a six-question plan for capturing disability10; however, all but one correspond to the questions adopted for use with the World Report on Disability, as recommended by the Washington Group.11 This is an initial step that may enhance data analysis and comparisons in the United States, as well as globally, and should be supported.

Funding Mechanisms in Rehabilitation Data from the multiple surveys on United States disability have shown that people with disabilities are better positioned with healthcare insurance coverage than many Americans, in the face of their higher risk for poverty. The Affordable Care Act (ACA) is meant to provide health insurance to all Americans, but it is not yet clear how rehabilitation services will be managed. Again, education of policy makers, legislators, and healthcare agencies is important. Certain levels of rehabilitation service will continue to be costly, and it must be ensured that the ACA will be mindful of the importance of functional restoration as a marker of outcome and not just mortality or morbidities.

Human Resources There remains considerable interest in rehabilitation careers in general, and this will likely continue. However, there seems to be no planning for a future workforce, despite healthcare reform and obvious changes. Data regarding per-capita needs and types of service needed regionally may inform planning. By using national disability survey and/or CMS data and data from professional organizations and the Department of Labor, analysis may inform projections for workforce needs; consideration of advanced degrees, including doctorate levels, for entry into the workforce by nonphysician professionals; and need for subspecialization by all professionals. The physician workforce has decreased, and there is no plan to increase the ranks, despite forecasts of less financial support for training. Physicians in general often act as gatekeepers for rehabilitation services, despite limited or no education in rehabilitation in their medical careers. Development of education modules for use in undergraduate medical education about disability conditions, rehabilitation, and examination of people with disabilities would be helpful both for a better understanding and appreciation of rehabilitation interventions and for

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more experience with the field for medical students choosing a career. Replication of the Academy of Certified Brain Injury Specialists program of certification for licensed and unlicensed professionals for other direct care workers could expand the workforce and allow better recognition for these workers.

Service Delivery The United States system is based on legislation, funding, and the marketplace. Again, it is unclear what the ACA will hold for future support of rehabilitation services, despite inclusion in essential benefits. There has been no guidance for planning purposes. To achieve a paradigm shift in service outcome measurement from only morbidities and mortality to measurement of an individual’s functional level will require advocacy and education. In preparation for obvious cost adjustments, more novel approaches could be considered as demonstration projects: (1) community-based rehabilitation activities might be considered, especially if there is a training, education, and certification component for support staff, much like the Academy of Certified Brain Injury Specialists program, and (2) telerehabilitation regionally and internationally has long been discussed, but barriers have not been addressed to allow use; this may be a time to initiate discussions with government or insurance programs.

Research and Evidence-Based Practice The Institute of Medicine reports have stated clearly the direction and focus that should be taken regarding rehabilitation science and research within the federal agencies. The National Center for Medical Rehabilitation Research’s future organization and activities are not clear. An effective response and advocacy from the field, particularly the physiatrists, would seem to be in order. Rehabilitation professionals should be less apologetic regarding the status of rehabilitation science in the United StatesVthe science is actually valid, useful, and strong but also diffuse. Many of the nontraditional paths rehabilitation research takes (e.g., epidemiology, public health, social science, service delivery) have provided valuable data for program development and measurement. Without a coordinated approach within the NIH, strong rehabilitation science and research have become a part of many other NIH institutes, rather than concentrated within one entity, which would foster growth and development. This message should be clearly articulated.

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CONCLUSIONS The United States is positioned fairly well regarding most aspects of rehabilitation. Policy and legislation have supported disability civil rights and rehabilitation efforts, although there is a need to continue to monitor for new interpretations or new issues. Funding and service delivery are dependent on the outcome and impact of the ACA. There are no easy answers to maintaining rehabilitation services within a changing healthcare environment that is focused on cost cutting, especially when details are unknown. Planning for future service provision and the workforce usually does not occur. In addition, there has never been an organized plan to increase the knowledge about rehabilitation for physiciansin-training. The need for coordinated rehabilitation research has been a long-standing issue, and the message that the existing rehabilitation science base is strong is typically not voiced. A targeted organized approach through strategic planning and implementation would be of most benefit. Not all of these areas can be addressed at one time, but there should be prioritized targets, based on timing and readily available resources and access. Perhaps, the United States rehabilitation community could take some lessons from international success stories. Three key areas emerge: education about disability, function, and benefits of rehabilitation to ACA decision makers and administrators; advocacy for a more robust organized presence and acknowledgement of rehabilitation science and research, especially at the NIH; and advocacy for education about disability and rehabilitation for physicians-in-training, with prepared and validated products. These areas have been in need for some time, and United States physiatrists with their professional associations should take the leadership role to progress these agenda. ACKNOWLEDGMENTS

We thank Dr. Robert Weber and Dr. Nancy Mudrick for assistance. REFERENCES 1. Turk MA, Mudrick NR: Rehabilitation interventions, in Albrecht GL (ed): SAGE Reference Series on Disability: Key Issues and Future Directions,Vol. 6. Thousand Oaks, CA, Sage Publications Inc, 2013

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2. Livermore G, Whalen D, Prenovitz S, et al: Disability data in national surveys. 2011. Available at: http:// www.hppd.vcu.edu/documents/2012/Disability DatainNationalSurveysAugust2011.pdf. Accessed March 17, 2013 3. Erickson W, Lee C, von Schrader S: 2011 Disability Status Report: United States. Ithaca, NY, Cornell University Employment and Disability Institutes (EDI), 2012. Available at: http://www.disabilitystatistics.org/ StatusReports/2011-PDF/2011-StatusReport_US. pdf?CFID=3973687&CFTOKEN=24eefa1dd4d410f78009749B-5056-B400- 0D49 C79 36C 5CA1 9C& jsessionid=843026516022fc3f97bd2e492f39544e1226. Accessed March 17, 2013 4. Effgen SK, Myers CT, Myers D: National distribution of physical and occupational therapists serving children with disabilities in educational environments. 2007. Available at: http://www.eric.ed.gov/PDFS/EJ795380.pdf. Accessed March 17, 2013 5. US Department of Commerce, United States Census Bureau: Industry Statistics Sampler NAICS 621340 Offices of physical, occupation, and speech therapists and audiologists. 2007. Available at: https://www.census.gov/ econ/industry/geo/g621340.htm. Accessed March 17, 2013 6. Pope AM, Tarlov AR: Disability in America: Toward a National Agenda for Prevention. Washington, DC, National Academies Press, 1991 7. Brandt EN Jr, Pope AM, Institute of Medicine Committee on Assessing Rehabilitation Science and Engineering: Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC, National Academies Press, 1997 8. Committee on Disability in America, Field MJ, Jette AM, eds: The Future of Disability in America. Washington, DC, National Academies Press, 2007 9. Horn SD, Gassaway J: Practice-based evidence: Incorporating clinical heterogeneity and patient-reported outcomes for comparative effectiveness research. Med Care 2010;48:S17Y22 10. US Department of Health and Human Services: Implementation guidance on data collection standards for ethnicity, sex, primary language, and disability statistics. 2011. Available at: http://aspe.hhs.gov/ datacncl/standards/ACA/4302/index.shtml. Accessed March 17, 2013 11. World Health Organization: World Report on Disability. Geneva, Switzerland, World Health Organization & the World Bank, 2011. Available at: http://www.who.int/ disabilities/world_report/2011/report/en/index.html. Accessed March 17, 2013

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The United States' response to the World Report on Disability.

The 2011 Annual Disability Status Report notes a disability prevalence rate of 12.1% in the United States. People with disabilities of all ages are in...
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