AAPM&R Presentation to IOM Committee on Disability in America 2005

Abstract

The following is based on a presentation by Steve M. Gnatz, MD, MHA, president of the American Academy of Physical Medicine and Rehabilitation, on January 9, 2006, in Washington, DC. The American Academy of Physical Medicine and Rehabilitation (AAPM&R) is pleased to have the opportunity to present our views to the Institute of Medicine (IOM) Committee on Disability in America. I am Steve M. Gnatz, MD, MHA, president of AAPM&R. Currently, I am a professor in the Department of Orthopaedic Surgery and Rehabilitation at Loyola University Medical Center in Maywood, IL, and serve as section chief of physical medicine and rehabilitation and medical director of the Loyola University Hospital inpatient rehabilitation unit. I joined the Loyola staff after serving as medical director at Marianjoy Rehabilitation Hospital in Wheaton, IL, and the Howard A. Rusk Rehabilitation Center in Columbia, MO. AAPM&R represents approximately 7000 physicians, specializing in physical medicine and rehabilitation who serve patients with physical and cognitive disabilities in both inpatient hospital settings and outpatient office and clinic settings. Members of AAPM&R served on the IOM Committee that produced the groundbreaking report Disability in America1Institute of MedicinePope A.M. Tarlov A.R. Disability in America toward a national agenda for prevention. Natl Acad Pr, Washington (DC)1991Google Scholar in 1991 and on the IOM Committee that issued the 1997 report on rehabilitation science Enabling America.2Institute of MedicineBrandt Jr, E.N. Pope A.M. Enabling America assessing the role of rehabilitation science and engineering. Natl Acad Pr, Washington (DC)1997Google Scholar Both of those reports emphasized for the first time the importance of disability as a public health problem of major dimensions. Disability in America in particular set forth for the nation the extent and cost of disability and made comprehensive recommendations to reduce the magnitude of disability. Enabling America reviewed the state of the rehabilitation and engineering sciences and suggested important changes in organizational structure and policy to enhance research in rehabilitation and thereby enhance the capacity of persons with disabilities to become independent. AAPM&R’s assessment in 2005 is that disability has increased as a public health problem over the past 15 years and that few of the recommendations of the 2 prior IOM reports, which we generally had supported, have been implemented. This has occurred despite the enactment of the Americans with Disabilities Act (ADA) in 1990 and the many expansions of Medicare coverage and services for disabled persons since 1972. Our presentation will focus on 5 areas of current concern regarding disability, which respond to the IOM Guideline for Statements and to some of the problems raised by and recommendations of the prior reports: (1) trends in disability, (2) definitions of disability and its measurement, (3) trends and policies affecting the delivery of health and rehabilitation services to persons with disabilities, (4) strengths and limitations of specific policies affecting persons with disabilities including the availability of technology, and (5) research needs. This presentation is the result of the analysis and comments of the following AAPM&R members and leaders in the field of physical medicine and rehabilitation (PM&R): Lynn Gerber, MD, Joel DeLisa, MS, MD, Mark Johnston, PhD, Diana Cardenas, MD, MHA, Leighton Chan, MD, MPH, John Ditunno, MD, and John Melvin, MD, MMSc. In the 1991 report Disability in America,1Institute of MedicinePope A.M. Tarlov A.R. Disability in America toward a national agenda for prevention. Natl Acad Pr, Washington (DC)1991Google Scholar(p34) the number of persons with disabilities, defined as limitations in activities of daily living (ADLs), was cited as 34 million, approximately 1 in 7 Americans. Today, the estimated number of persons with disabilities is about 53 million, based on the Census Bureau Survey of Income and Program Participation (SIPP) of 1997,3U.S. Census BureauSurvey of incomes and program participation (SIPP). 2006Google Scholar and this number is confirmed by the 2000 census data. The number of Americans with disabilities in 2005 is close to 1 in 5 and about 33 million have severe disabilities.3U.S. Census BureauSurvey of incomes and program participation (SIPP). 2006Google Scholar, 4McNeil J. American with disabilities. US Census Bureau, Washington (DC)2006Google Scholar, 5McNeil J. Current population reports.in: American with disabilities house economic studies. U.S. Census Bureau, Washington (DC)2006Google Scholar Disability has therefore grown at a rate greater than the growth in the population generally. Equally disturbing, about 10 million persons with disabilities of working age are unemployed and the employment rate of working-age people with disabilities has decreased between 2003 and 2004 to 37.5%. The rate of nondisabled working-age Americans was 77.8% in 2004 and had risen compared with 2003.6Cornell University Rehabilitation Research and Training Center2004 disability status report. 2006Google Scholar Disability is also the strongest predictor of a number of conditions that limit independence and work: pain, fatigue, falls and injuries, limited mobility, and muscle aches and spasms.7Kinne S. Patrick D.L. Lochner D.D. Prevalence of secondary conditions among people with disabilities.Am J Public Health. 2004; 94: 443-445Crossref PubMed Scopus (216) Google Scholar A significant trend in disability involves the association between disability and aging which has serious implications for future disability policy because the U.S. population is aging at a rapid rate. According to the SIPP,3U.S. Census BureauSurvey of incomes and program participation (SIPP). 2006Google Scholar 44% of persons between 65 and 69 years of age had a disability and 74% of those over 80 had a disability. It is well accepted that the aging process leads to impairments in stature, gait, and degenerative changes in weight-bearing joints.4McNeil J. American with disabilities. US Census Bureau, Washington (DC)2006Google Scholar, 8Clark G.S. Siebens H. Rehabilitation of the geriatric patient.in: DeLisa J.A. Gans B. Physical medicine and rehabilitation principles and practice. Lippincott Williams & Wilkins, Philadelphia2005: 1538-1539Google Scholar Other supportive data for the association between disability and age indicate that, among persons age 70 and older, 58% have arthritis and 9% have experienced a stroke.9Administration on AgingCensus 2000 data on the aging. P41. Age by types of disability for the civilian noninstitutionalized population 65 years and over with disabilities for each state. 2005Google Scholar By 2030, the aging population of the United States will increase to 70 million Americans, which will constitute 21% of the population.10U.S. Census BureauU.S. interim projections by age, sex, race, and Hispanic origin. January 2000. tbl 2a. 2006Google Scholar Another trend in disability is the growth in secondary conditions of persons with disabilities, which lead to further disability, hospitalization, and other care needs such as personal assistance. The presence of secondary conditions to disability suggests the need for improved continuity of care and health maintenance for persons with disabilities. Recent research by Cardenas et al11Cardenas D.D. Hoffman J.M. Kirshblum S. McKinley W. Etiology and incidence of rehospitalization after traumatic spinal cord injury a multicenter analysis.Arch Phys Med Rehabil. 2004; 85: 1757-1763Abstract Full Text Full Text PDF PubMed Scopus (341) Google Scholar indicates that rehospitalization rates have increased for people with spinal cord injury (SCI). Average rehospitalizations are no longer declining as they had been prior to about 1995. Rehospitalization rates for people with SCI were 28% to 37% in the first year after injury during the period 1995 to 2002 and this does not include the return for completing rehabilitation. The proceedings of the White House Conference on Aging, Mini-Conference on Aging and Disability found an increase risk for persons who were aging with a disability for secondary disabling conditions.12Lollar D.J. Public health and disability emerging opportunities.Public Health Rep. 2002; 117: 131-136Crossref PubMed Scopus (62) Google Scholar The Washington State Risk Factor Surveillance Survey of 2001132005 White House Conference on Aging: Disability & Aging: Seeking Solutions to Im-prove Health, Productivity and Community Living. Final report and recommendations; 2005 July 21-22; Arlington (VA). Available at: http://www.whcoa.gov/about/policy/meetings/mini_conf/FINAL%20REPORT_07_21_05.pdf. Accessed January 24, 2006.Google Scholar found 87% of respondents with disabilities had at least 1 secondary condition, whereas respondents without disabilities reported only 49% of those with some health condition having a secondary condition. The association between disability and aging, the growth in prevalence of secondary conditions in persons with disabilities, and the preference of aging and disabled persons to live in the community suggest the need for greatly improved community-based primary care and rehabilitation programs and for improved methods of continuity of care. The field of rehabilitation medicine generally and AAPM&R in particular have been appropriately proud of having developed measures of disability and functional improvement, beginning as early as the 1970s. Research done by Granger and Hamilton14Hamilton B.B. Granger C.V. Sherwin F.S. Zielezny M. Tashman J.S. A uniform national data system for medical rehabilitation.in: Fuhrer M.J. Rehabilitation outcomes analysis and measurement. PH Brookes, Baltimore1987: 137-147Google Scholar led to the FIM instrument and a data system for inpatient hospitals using the FIM. Later research by Stineman,15Stineman M.G. Escarce J.J. Goin J.E. Hamilton B.B. Granger C.V. Williams S.V. A case-mix classification system for medical rehabilitation.Med Care. 1994; 32: 366-379Crossref PubMed Scopus (167) Google Scholar as well as by Carter and Melvin16Carter G.M. Buchanan J.L. Buntin M.B. et al.Executive summary of analyses for the initial implementation of the inpatient rehabilitation facility prospective payment system. 2002; (Santa Monica: RAND; HCFA contract no. 500-95-0056.)Google Scholar developed the measurement instrument into a method to predict the necessary resources for inpatient rehabilitation care and payment under Medicare for inpatient rehabilitation facilities (IRFs). But the FIM certainly is a limited tool. Its focus is on general inpatient rehabilitation care and cost. It is a highly reliable method of rating assistance and independence in ADLs in IRFs.17Ottenbacher K.J. Hsu Y. Granger C.V. Fiedler R.C. The reliability of the functional independence measure a quantitative review.Arch Phys Med Rehabil. 1996; 77: 1226-1232Abstract Full Text PDF PubMed Scopus (875) Google Scholar However, it does not extend beyond the hospital and only measures the ultimate goal for persons with disabilities living independently in a community. It is also not necessarily an instrument that lends itself to use in measuring specific medical rehabilitation interventions and is therefore not particularly useful in clinical trials or other clinical research, which is essential if the field of rehabilitation is to improve its quality of care. (Regarding limitations of FIM and need for better quality measures, see Johnston et al18Johnston M.V. Eastwood E. Wilkerson D.L. Anderson L. Alves A. Systematically assuring and improving the quality and outcomes of medical rehabilitation programs.in: DeLisa J.A. Gans B.M. Rehabilitation medicine principles and practice. 4th ed. Lippincott Williams & Wilkins, Philadelphia2005: 1163-1192Google Scholar and Wilkerson and Johnston.19Wilkerson D.L. Johnston M. Outcomes research and clinical program monitoring systems current capability and future directions.in: Fuhrer M. Medical rehabilitation outcomes research. PH Brookes, Baltimore1997: 275-305Google Scholar) A major expansion of research is necessary to develop measurement approaches for disability that will assist in research on the outcomes of specific rehabilitation interventions and measure the independence of the person with a disability in community living and the job environment. “We need assessment tools whose value has been established to provide relevant information to the application. Most measurement tools are not designed for measuring disability with a degree of sensitivity and specificity to answer some of the most important questions” (Lynn Gerber, MD, communication, November 28, 2005). Such a research program must integrate the efforts of federal agencies that have a significant stake in the study and treatment of disability, for example, the National Institute on Disability and Rehabilitation Research (NIDRR), the National Center for Medical Rehabilitation Research (NCMRR), the Centers for Disease Control and Prevention (CDC), the Veterans Administration, the Department of Defense, and the Agency for Healthcare Research and Quality, each of which has an interest in this matter. Disability in America stressed the need for “longitudinal care, an integrated service delivery network that is responsive to the health, social, housing and personal care needs of persons with disabling conditions.”1Institute of MedicinePope A.M. Tarlov A.R. Disability in America toward a national agenda for prevention. Natl Acad Pr, Washington (DC)1991Google Scholar(p243) Recommendation 18 of Disability in America was for a “new health service delivery strategies for persons with disabilities that will facilitate access to services … including assistive technology and attendant services.”1Institute of MedicinePope A.M. Tarlov A.R. Disability in America toward a national agenda for prevention. Natl Acad Pr, Washington (DC)1991Google Scholar(p283) It is clear, however, that the influence of the Medicare program on care in the past 15 or 20 years has been inconsistent with continuity of care and improved postacute care intended to lead to independence in the community. The emphasis on cost controls beginning in 1983 resulted in a series of actions that reduced the length of stay (LOS) and the amount of service in each element of health care necessary to a person with a disability. The prospective payment system (PPS) diagnostic-related groups (DRGs) placed per patient limits on inpatient acute care which had the effect of reducing the acute inpatient LOSs and expanding the case loads of IRFs, skilled nursing facilities (SNFs), and home health. Subsequently, Medicare developed and implemented similar payment limits for SNFs (SNF resource utilization groups), home health (home health PPS), and IRFs (IRF PPS functional-related groups). Those programs have in turn reduced the LOS and services of these providers. The latest restrictions of the Center for Medicare and Medicaid Services (CMS) on case mix and admissions for IRFs exacerbate the problem of reduced availability of services for the person with a disability. Further, this approach highly values developing practice guidelines for disease management. Disease management is a necessary but not sufficient condition for reducing disease burden, some of which is attributable to disability. It does not, for example, address a critical need for disability prevention, early intervention, and continued management of disability. At the same time as a person with a disability is finding less care at each level of service, he/she is also facing a world of multiple providers, each of whom is financially encouraged to get the patient out of its particular health care programs as soon as possible. There is no positive incentive to assist or organize the continuous care necessary. Evidence from research in Washington State undertaken by Cardenas11Cardenas D.D. Hoffman J.M. Kirshblum S. McKinley W. Etiology and incidence of rehospitalization after traumatic spinal cord injury a multicenter analysis.Arch Phys Med Rehabil. 2004; 85: 1757-1763Abstract Full Text Full Text PDF PubMed Scopus (341) Google Scholar suggests that adults with spina bifida receive inadequate assistance in managing their medical care. Fifty percent of the 307 subjects in the Cardenas study saw 12 or more physicians and 25% saw 26 or more. Only 16% saw a specialist in PM&R. The level of illness and disability is evidenced by the fact that 58% had at least 1 hospitalization during the 4.5-year study period. The evidence of rehospitalization of patients with SCI referred to earlier in this presentation also suggests there may be problems with follow-up and continuity of care. Research by Hardy and Gill20Hardy S.E. Gill T.M. Recovery from disability among community-dwelling older persons.JAMA. 2004; 291: 1596-1602Crossref PubMed Scopus (274) Google Scholar at Yale University suggests that older persons who have a disability may need continuing attention to their care to prevent recurrence of a disabling condition from which they recovered or another disabling event. Gaps in service at the community level are indicated also by the findings of the White House Conference on Aging, Mini-Conference on Disability and Aging: 1 million older persons with disabilities had no personal assistance services at all despite needing assistance with 2 or more ADLs for at least 17 hours per week.21LaPlante M.P. Kaye H.S. Kang T. Harrington C. Unmet need for personal assistance services estimating the shortfall in hours of help and adverse consequences.J Gerontol B Psychol Sci Soc Sci. 2004; 59: S98-S108Crossref PubMed Scopus (141) Google Scholar In the early years of medical rehabilitation from 1950 through the 1970s, the rehabilitation hospital organized a comprehensive rehabilitation program that involved vocational training and counseling and the development of independent-living programs and services. PM&R physicians and inpatient hospital programs assisted in the establishment of the first independent-living programs in the 1970s and most inpatient hospitals and large units in hospitals had established vocational rehabilitation programs directly or by arrangement. However, the economic pressures placed on hospital and physician services by payers in the past decade have resulted in an inability of rehabilitation programs and health professionals to offer such comprehensive programs. The gaps in care and lack of an integrated network of services for persons with disabilities are also the result of the fragmentation of leadership and policy development at the federal level. The Rehabilitation Services Administration and NIDRR, from 1950 to 1980, the lead agencies on disability and rehabilitation, are in the Department of Education, which does not commonly interact with health care providers or agencies. The CDC with its Disability and Health Program is in the Department of Health and Human Services (DHHS) as are the National Institutes of Health (NIH) and NCMRR. The Administration on Developmental Disabilities is in DHHS as is the Office of Disability and Long-Term Care Policy. But none of these 4 DHHS disability-related agencies are in the same part of DHHS nor do they seem to have frequent, serious collaboration on programs or policy development. The Medicare agency is also in DHHS but has little input from the other DHHS agencies with rehabilitation missions. Finally, the Social Security Agency is an independent agency and it administers the Disability Insurance and Supplemental Security Income programs, each of which has related rehabilitation services components. We suggest that the IOM Committee reaffirm and possibly expand the prior recommendations (1) from Disability in America for new health delivery systems to achieve improved postacute care, including prevention of disability, and continuity in services; and (2) from Enabling America for the reorganization of disability agencies to achieve a more focused and efficient program of both research and services. Unfortunately the list of the weaknesses of policies at the federal level alone, as affects services to persons with disabilities and the goal of independence in the community, is long: •The Medicare rule on the qualifications of hospitals to become certified IRFs and the specific requirement that the IRF have at least 75% of its patients from 13 categories of patients have caused an unnecessary disruption in the care that such facilities have traditionally provided. Use of this rule to structure admissions and direct some patients to levels of care that may be inappropriate, combined with an effort by CMS and its fiscal intermediaries to redefine admissions policy without reference to professional standards or evidence in the literature, serves to eliminate the flexibility professionals have always had in fashioning appropriate IRF services.•In 1997 Congress amended the Medicare Part B program placing a cap of $1500 per year on outpatient physical therapy and speech-language pathology services and placing a similar $1500 cap on occupational therapy services. The caps were not adjusted for severity and have discriminated against the patients needing care most. Although the caps have only been implemented for 1 year since 1997 because Congress suspended implementation, they may be applied next year. In any event, the caps are arbitrary because they are not based on any evidence relative to the amount of therapy necessary over a specified period for different disabilities. It is also very untimely to cap outpatient rehabilitation services under Medicare when the PPS for inpatient care is effectively reducing LOSs in IRFs and in SNFs.•The in-home limitation on use of durable medical equipment imposed by Medicare Part B policy is wholly inconsistent with the goal of achieving maximum independence for persons with disabilities.•The slow and difficult process of justifying new coverage for new technologies for persons with disabilities under Medicare serves to limit the availability of such technology when it is often essential to independent living for a person with a disability.•Difficulty in obtaining Medicaid waivers for community-based alternatives to institutional programs for persons with disabilities is reducing the ability of persons with disabilities to live independently and is making implementation of the Olmstead Supreme Court decision22Olmstead v L.C. and E.W. 527 U.S. 581 (1999).Google Scholar more difficult to implement. Olmstead held that where attending physicians recommended a community placement for a person with a disability, the state Medicaid program should honor that recommendation as long as it did not do so in a manner inconsistent with fairness in treatment of all such persons.•Federal Medicare law and the growth of state laws limiting physician employment and contracting with nonphysician service professionals have restricted the capacity of physician practices and physician-directed clinics to develop more comprehensive rehabilitation service programs in the community. We would recommend that each of these barriers to achieving independence for persons with disabilities be eliminated. Despite the length of the list of weaknesses and limitations of current policy, which is certainly not an exhaustive one, there have been strengths in programs for persons with disabilities. The expansion of the Medicare program to cover persons with disabilities as well as the aged in 1972 and the extension of coverage for both inpatient (IRF) and outpatient rehabilitation services during the 1970s and 1980s have resulted in the increased availability of health and rehabilitative services for persons with disabilities by the early 1990s. The problem is that, by expanding our health care services, we have reached the point in the last 5 or 10 years where severe constraints have resulted in greater fragmentation of care, less quality postacute care, and less continuity of care. While there has been technologic innovation, which could provide substantial benefits to persons with disabilities in recent years, the coverage of such technology by health insurers is severely constrained. In 2002 AAPM&R and the Foundation for Physical Medicine and Rehabilitation sponsored a conference on assistive technologies and issued a major report, which is attached to this statement. The conference followed a study by the National Council on Disability on assistive technology and barriers to its use.23National Council on DisabilityFederal policy barriers to assistive technology. 2006Google Scholar The attachment “Access to Assistive Technologies” includes an extensive list of barriers to use of technology at pages 15 to 24. We would urge consideration of those many recommendations to improve access to technology by this Committee. The fields of disability and of rehabilitation are so very broad in terms of both conditions and types of service, and the research capacity is, despite advances in the past 10 years, still very limited relative to the universe of need. In the past year, AAPM&R sponsored a research summit of many interested organizations to focus on the capacity problem. The following are a few of the major problems and needs identified in the document: •Lack of models and venues for interdisciplinary and collaborative research;•Lack of workable definition of the domains of rehabilitation science;•Lack of appropriate scientific training curriculum for the current needs and of training support because there is still a substantial research manpower shortage;•Lack of infrastructure particularly for the complex and demanding clinical research area, including national databases and registries that utilize both objective and subjective data collection, and enable meaningful epidemiologic analyses;•Need for creative new approaches to measuring outcomes and for performing clinical research that is not entirely reliant on randomized controlled trials (RCTs); and•Specific areas for research identified by members of AAPM&R include mechanisms and treatments for chronic neuropathic pain; clinical trials on recovery from and repair of SCI; research to understand injury to the musculoskeletal system and its repair; and research to elucidate the mechanisms of head trauma (including mild trauma) and its treatment. The general discussion of trends in disability indicates the importance of defining the specific areas of disability on which data are needed and focusing surveillance and data collection on such discrete areas. Likewise, the prior discussion of measurement indicates how essential it is to refine the forms of measurement used to meet new applications such as independent function in the community or research on the efficacy of specific interventions. A major research and demonstration effort at developing the necessary measurement tools is essential. A major effort is also needed to determine which scientific methods short of RCTs might be appropriate in assessing the efficacy of rehabilitation interventions and which resources are needed to undertake RCTs where they may be necessary. Research and demonstration efforts to deal with definitions of disability, data collection, and measurement thus far seem fragmented and have been unsuccessful. This is not due to the lack of attention at NIDRR, CDC, or NCMRR; rather, it is the result of each agency having too little funding, too many priorities, and insufficient position in the federal hierarchy. To that end, the summit on research document recommends the consolidation of a number of existing disability agencies into 1 Administration on Disability within DHHS. This approach is not dissimilar from the recommendations of Enabling America regarding a single disability agency in a DHHS to focus on research, demonstrations, prevention, and service delivery innovation. Recently AAPM&R and 24 other organizations, including the Association of Academic Physiatrists, American Congress of Rehabilitation Medicine, American Physical Therapy Association, the American Academy of Neurology, Christopher Reeve Foundation, and Brain Injury Association, collaborated to implement one of the recommendations of Enabling America regarding the NCMRR and NIH. Enabling America recommended that “NCMRR for example should be at least a separate … free standing Center at NIH.”2Institute of MedicineBrandt Jr, E.N. Pope A.M. Enabling America assessing the role of rehabilitation science and engineering. Natl Acad Pr, Washington (DC)1997Google Scholar(p291) These organizations are attempting to establish a free-standing institute or center in NIH through legislation and the support of NIH administratively. Its purpose would be to bring greater focus, coherence, and funding to NIH rehabilitation research. In 1995, NIH spent $158 million on rehabilitation research and in 2005 it is estimated that it would spend $300 million.2Institute of MedicineBrandt Jr, E.N. Pope A.M. Enabling America assessing the role of rehabilitation science and engineering. Natl Acad Pr, Washington (DC)1997Google Scholar(p248),24National Institutes of HealthEstimates of funding for various diseases, conditions, research areas. 2006Google Scholar In that same 10-year period, the NIH overall budget grew from about $11 billion to $28 billion; this means that the portion of funds devoted to rehabilitation research actually decreased substantially from 1995 to 2005.2Institute of MedicineBrandt Jr, E.N. Pope A.M. Enabling America assessing the role of rehabilitation science and engineering. Natl Acad Pr, Washington (DC)1997Google Scholar(p248),25Verville R. DeLisa J.A. Evolution of National Institutes of Health options for rehabilitation research.Am J Phys Med Rehabil. 2003; 82: 565-579PubMed Google Scholar, 26Office of Budget, National Institutes of HealthAppropriate history by institute and center. 2006Google Scholar While there was progress in areas such as the expansion of health care services available to persons with disabilities between 1972 and 1990, the last 10 years have produced specific restrictions on services that have worsened the lot of persons with disabilities so far as their comprehensive rehabilitation. Recent data suggest a growth in the prevalence of disability. Recent data also indicate that, despite the enactment of the ADA and its policies on equality of opportunity for persons with disabilities, employment continues to be a serious problem for persons with disabilities.