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and environmental modifications can play in reducing disability and increasing functional ability and quality of life. Education of Persons with Disabilities and Their Families, Personal Attendants, and Advocates People with disabilities and their families, personal attendants, and advocates should be better informed about the principles of disabilityprevention. Such education would contribute significantly to the prevention ofdisability and secondary conditions —those brought about by poor self-care as well as those induced by a lack of needed social and other support services,architectural inaccessibility, unequal educational and employmentopportunities, negative attitudes toward disability, changes in livingenvironments, and greater exposure to disruptive, frustrating events. Independent living centers, which are controlled and staffed by persons with disabilities, are designed to deal with the prevention of secondaryconditions and to be a source of information on the practical aspects of dailyliving with a disability. Because these centers are usually staffed by personswith disabilities who are living independently, they offer advice based on first-hand experience of the motivation and ingenuity needed to pursue anindependent lifestyle. Being able to share experiences with peers who areindependent brings to light those coping mechanisms that aid in preventingsecondary conditions. Independent living centers are also effective advocatesfor attitudinal and architectural changes in society that would improveaccessibility, stimulate social interaction and productivity, and facilitate anactive, quality lifestyle. RECOMMENDATION 27: Provide more training opportunities for family members and personal attendants of people with disabling conditions Persons with disabilities, their families, personal attendants, and advocates should have access to information and training relative to disability prevention with particular emphasis on the prevention of secondary conditions. Independent living centers and other community-based support groups provide a foundation for such training programs and offer a source of peer counseling. RECOMMENDATIONS 287About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

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Burk, R. D. 1967. The nature of disability. J Rehabil 33(6):10-35. Butler, J. A., B. Starfield, and S. Stenmark. 1984. Child health policy. In: Child Development Research and Social Policy, H. W. Stevenson and A. E. Siegel, eds. Chicago: University of Chicago Press. Calame, A., C. L. Fawer, V. Claeys, L. Arrazoala, S. Ducret, and L. Jaunin. 1986. Neurodevelopmental outcome and school performance of very-low-birthweight infants at 8 years of age. Eur J Pediatr 145(6):461-466. Caplan, A. 1988. Is medical care the right prescription? In: The Economics and Ethics of Long-Term Care and Disability, S. Sullivan and M. E. Lewin, eds. Washington, D. C. : American Enterprise Institute for Public Policy Research. Carbine, M. E., and G. E. Schwartz. 1987. Strategies for Managing Disability Costs. Washington, D. C. : Washington Business Group on Health. Carroll, T. J. 1961. Blindness: What It is, What It Does, and How to Live with It. Boston: Little, Brown. Casey, R., S. Ludwig, and M. C. Mc Cormick. 1986. Morbidity following minor head trauma in children. Pediatrics 78(3):497-502. Castelnuovo-Tedesco, P. 1981. Psychological consequences of physical defects: A psychoanalytic perspective. Int Rev Psychoanalysis 8(2):145-154. Centers for Disease Control. 1985. Preventing Lead Poisoning in Young Children. Atlanta, Ga. : U. S. Department of Health and Human Services. Centers for Disease Control. 1988a. Comprehensive Plan for Epidemiologic Surveillance. Atlanta, Ga. : U. S. Department of Health and Human Services. Centers for Disease Control. 1988b. Congenital Malformations Surveillance. January 1982-December 1985. Atlanta, Ga. : U. S. Department of Health and Human Services. Centers for Disease Control. 1989a. Chronic disease reports: Deaths from diabetes--United States, 1986. MMWR 38(31):543-546. Centers for Disease Control. 1989b. Comorbidity of chronic conditions and disability among older persons--United States, 1984. MMWR 38(46):788-791. Centers for Disease Control. 1990a. Childhood Injuries in the United States. Atlanta, Ga. : Department of Health and Human Services. Centers for Disease Control. 1990b. HIV/AIDS Surveillance Report--January. Rockville, Md. : National AIDS Information Clearinghouse. Chavez, G. F., J. F. Cordero, and J. E. Becerra. 1988. Leading major congenital malformations among minority groups in the United States, 1981-1986. MMWR Surveillance Summaries37(3):17-24. Chernoff, R., and D. A. Lipschitz, eds. 1988. Health Promotion and Disease Prevention in the Elderly. New York: Raven Press. Chirikos, T. N. 1986. Accounting for the historical rise in work-disability prevalence. Milbank Q 64 (2):271-301. Chirikos, T. N. 1989. Aggregate economic losses from disability in the United States: A preliminary assay. Milbank Mem Fund Q 67(Suppl. 2, Part 1):59-91. Chollet, D. 1988. Public and private issues in financing health care for children. EBRI (Employee Benefit Research Institute) Issue Brief 79:1. Cicchetti, D., and L. A. Sroufe. 1976. The relationship between affective and cognitive development in Down's syndrome infants. Child Devel 47:920-929. Cohen, M. 1957. A Preface to Logic. New York: Meridian Books. Colvez, A., and M. Blanchet. 1981. Disability trends in the United States population 1966-1976: Analysis of reported causes. Am J Pub Health 71(5):464-471. Commission on Chronic Illness. 1957. Chronic Illness in the United States. Vol. 4, Chronic Illness in a Large City. Cambridge, Mass. : Harvard University Press. Cooper, K. D., K. Tabaddor, W. A. Hauser, K Shulman, C. Feiner, and P. R. Factor. 1983. The epidemiology of head injury in the Bronx. Neuroepidemiol 2(1-2):70-88. REFERENCES 290About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Cordero, J. F., G. P. Oakley, Jr., F. Greenberg, and L. M. James. 1981. Is Bendectin a teratogen? J Am Med Assoc 245(22):2307-2310. Crimmins, M., Y. Saito, and D. Ingegneri. 1989. Changes in life expectancy and disability-free life expectancy in the United States. Population and Development Review 15(2):235-267. Crocker, A. C. 1989. The causes of mental retardation. Pediatr Ann 18(10):623-626. Crocker, A. C. 1986. Data collection for the evaluation of mental retardation prevention activities: The fateful forty-three. Developmental Evaluation Clinic, Childrens Hospital, Boston,Mass. Cutler, A. T., R. Benezra-Obeiter, and S. J. Brink. 1986. Thyroid function in young children with Down syndrome. Am J Dis Child 140(5):479-483. Dahle, A. J., and F. P. Mc Collister. 1986. Hearing and otologic disorders in children with Down syndrome. Am J Ment Defic 90(6):636-642. Davidoff, G., P. Thomas, M. Johnson, S. Berent, M. Dijkers, and R. Doljanac. 1988. Closed head injury in acute traumatic spinal cord injury: Incidence and risk factors. Arch Phys Med Rehabil 69(10):869-872. Davidson, J., J. M. Hyde, and P. W. Alberti. 1988. Epidemiology of hearing impairment in childhood. Scand Audiol 17(30):13-20. Deaver, G. G., and M. E. Brown. 1945. Physical Demands of Daily Life. New York: Institute for the Crippled and Disabled. De Graw, C., D. Edell, B. Ellens, M. Hillemeier, J. Liebman, C. Perry, and J. S. Palfrey. 1988. Public Law 99-457: New opportunities to serve young children with special needs JPediatr 113(6):971-974. De Jong, G., and R. Lifchez. 1983. Physical disability and public policy. Sci Am 248(6):40-49. De Jong, P. 1987. Work capacity and the probability of entry into the Dutch disability insurance program. In: Disability Benefits: Factors Determining Applications and Awards, H. Emanuel, E. H. De Gier, and P. A. B. Kalker Konijn, eds. Greenwich, Conn. : JAI Press, Inc. De Vivo, M. J. 1989. What is known about the costs of spinal cord injury? In: Proceedings of the National Consensus Conference on Catastrophic Illness and Injury. The Spinal Cord Injury Model: Lessons Learned and New Applications. Atlanta, Ga. : Shepard Center for Spinal Cord Injury. Dikmen, S., A. Mc Lean, and N. R. Temkin. 1986. Neuropsychological and psychosocial consequences of minor head injury. J Neurol Neurosurg Psychiatry 49(11):1227-1232. Diller, L., and Y. Ben-Yishay. 1989. Assessment in traumatic brain injury. In: Traumatic Brain Injury, P. Bach-y-Rita, ed. Vol. 2, Comprehensive Neurologic Rehabilitation. New York:Demos Publications. Ditunno, J. F., M. L. Sipski, E. A. Posuniak, Y. T. Chen, W. E. Staas, and G. J. Herbison. 1987. Wrist extensor recovery in traumatic quadriplegia. Arch Phys Med Rehabil 68(5, Part1):287-290. Ditunno, J. F., S. L. Stover, M. M. Freed, and J. H. Ahn. 1989a. A comparison of motor recovery of the upper extremities of C4 and C5 SCI patients. Abstracts Digest, American Spinal Injury Association, 15 th Annual Scientific Meeting, Las Vegas, Nevada. Ditunno, J. F., S. L. Stover, M. M. Freed, and J. H. Ahn. 1989b. Course and extent of motor recovery of the upper extremities in traumatic quadriplegia. Arch Phys Med Rehabil 70(A):52. Dixon, T. P. 1989. Systems of care for the head-injured. In: Physical Medicine and Rehabilitation: Traumatic Brain Injury, L. J. Horn and D. N. Cope, eds. Philadelphia: Hanley and Belfus. Duckworth, D. 1984. The need for a standard terminology and classification of disablement. In: Functional Assessment in Rehabilitation Medicine, C. V. Granger and G. E. Gresham, eds. Baltimore, Md. : Williams & Wilkins. Dumars, K. W., T. W. Gawron, C. L. Pearce, and C. A. Foster. 1987. Prevention of developmental disabilities: A model for organizing clinical activities. Res Dev Disabil 8(4):507-520. Dutton, D. B., and S. Levine. 1989. Socioeconomic status and health: Overview, methodological critique and reformation. In: Pathways to Health: The Role of Social Factors, J. Bunker, D. Gomby, and B. Kehrer, eds. Menlo Park, Calif. : Henry J. Kaiser Family Foundation. REFERENCES 291About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Edmonds, L. D., and G. Windham. 1985. Trends in the incidence of neural tube defects in the United States. In: Alpha-Fetoprotein and Congenital Disorders, G. J. Mizejewski and I. H. Porter, eds. Orlando, Fla. : Academic Press. Edna, T. H., and J. Cappelen. 1987. Return to work and social adjustment after traumatic head injury. Acta Neurochir 85(1-2):40-43. Eisenberg, H. M. 1985. Outcome after head injury: General considerations. In: Central Nervous System Trauma Status Report, D. P. Becker and J. T. Povlishock, eds. Bethesda, Md. :National Institute of Neurological and Communicative Disorders and Stroke, National Institutes of Health. Environmental Protection Agency. 1986. Air Quality Document for Lead, vol. 4. EPA Pub. No. EPA-600/8-83/028DF. Research Triangle Park, N. C. : Environmental Criteria and Assessment Office. Erickson, J. D., J. Mulinare, P. W. Mc Clain, T. G. Fitch, L. M. James, A. B. Mc Clearn, and M. J. Adams. 1984. Vietnam veterans' risks for fathering babies with birth defects. J Am Med Assoc 252(7):903-912. Erickson, P., E. A. Kendall, J. P. Anderson, and R. M. Kaplan. 1989. Using composite health status measures to assess the nation's health. Medical Care 27(3, Suppl. ):S66-S76. Fishburn, M. J., R. J. Marino, and J. F. Ditunno. 1990. Atelectasis and pneumonia in acute spinal cord injury. Arch Phys Med Rehabil 71(3):197-200. Frankowski, R. F., J. F. Annegers, and S. Whitman. 1985. The descriptive epidemiology of head trauma in the United States. In: Central Nervous System Trauma Status Report, D. P. Becker and J. T. Povlishock, eds. Bethesda, Md. : National Institute of Neurological and Communicative Disorders and Stroke, National Institutes of Health. Freudenheim, M. 1990. Insurers seek help for uninsured. New York Times, Jan. 11:D1,D7. Frey, W. 1984. Functional assessment in the 80s: A conceptual enigma, a technical challenge. In: Functional Assessment in Rehabilitation, A. Halpern and M. J. Fuhrer, eds. Baltimore,Md. : Paul H. Brookes Publishing Co. Friedman, J. M., and P. N. Howard-Peebles. 1986. Inheritance of Fragile X syndrome: An hypothesis. Am J Med Genet 23(1-2):701-713. Fries, J. F. 1988. Aging, illness and health policy: Implications of the compression of morbidity. Perspectives in Biology and Medicine 31(3)407-428. Fries, J. F., and L. M. Crapo. 1981. Vitality and Aging: Implications of the Rectangular Curve. San Francisco: W. H. Freeman. Fries, J. F., P. Spitz, R. G. Kraines, and H. R. Holman. 1980. Measurement of patient outcome in arthritis. Arthritis Rheum 23(2):137-145. Fries, J. F., L. W. Green, and S. Levine. 1989. Health promotion and the compression of morbidity. Lancet 1(8636):481-483. Frigoletto, F. D., and G. A. Little, eds. 1988. Guidelines for Perinatal Care, 2nd ed. Elk Grove, Ill. : American Academy of Pediatrics; Washington, D. C. : American College of Obstetrics and Gynecology. Froster-Iskenius, U., G. Felsch, C. Shirren, and E. Schwinger. 1983. Screening for Fragile X q in a population of mentally retarded males. Hum Genet 63(2):153-157. Gallagher, R. M., and F. Stewart. 1987. Psychiatric rehabilitation and chronic physical illness. In: Psychiatric Disability: Clinical, Legal and Administrative Dimensions, A. T. Meyersonand T. Fine, eds. Washington, D. C. : American Psychiatric Press. Gardner-Medwin, D., and P. Sharples. 1989. Some studies of the Duchenne and autosomal recessive types of muscular dystrophy. Brain Dev 11(2):91-97. German, P. S., and L. P. Fried. 1989. Prevention and the elderly: Public health issues and strategies. Ann Rev Pub Health 10:319-332. Goldman, H. H., and R. W. Manderscheid. 1987. Chronic mental disorder in the United States. In: Mental Health, United States 1987, R. W. Manderscheid and S. A. Barrett, eds. Washington, D. C. : U. S. Government Printing Office. REFERENCES 292About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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APPENDIXESAPPENDIXES 307About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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APPENDIXES 308About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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A Disability Concepts Revisited: Implications for Prevention Saad Z. Nagi * The significance of disability as an individual and a societal concern cannot be overstated. Whether measured in prevalence or in social and economic consequences, the impacts are daunting. Although the questions theyask may be phrased somewhat differently, comprehensive disability surveys arefairly consistent in estimating that about 6. 5 percent of noninstitutionalized Americans ages 18 through 64 are so severely disabled that they are not able towork (see, for example, Nagi, 1976; Social Security Administration, 1981,1982). Estimates of the number of people who are limited in the amount or kindof work they can do, but who are not totally prevented from working, verywidely; on average, however, they constitute an additional 6. 5 percent of thesame sector of the population (Haber, 1990). These figures mean that about onein every eight adults in the United States in these age categories is disabled orlimited in vocational pursuits. Furthermore, 1. 8 percent of thenoninstitutionalized civilian U. S. population 18 years of age and older need assistance in personal care; 3. 5 percent need assistance in shopping, housework, and outdoor mobility; and 6. 3 percent are limited in performing these activitiesof daily living but do manage to carry them out independently (Nagi, 1976). Most societies, especially those of the industrialized world, have developed various types of programs of benefits and services. These programs provide another way of estimating the magnitude of the problem in terms of numbers of beneficiaries (Sunshine, 1980). During the early 1980s there wereabout 915 million beneficiaries of long-term disability programs in this country. (Some people may have been counted more than once, however, if they derivedbenefits from more than one program. ) Social Security * Ohio State University DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 309About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Disability Insurance, Supplemental Security Income, and Veterans Compensation programs are the largest contributors to this total. These threeprograms alone account for nearly three-quarters of all beneficiaries of long-term disability benefits. The picture of temporary disability and workers'compensation is not as clear because of the continuous movement ofbeneficiaries into and out of these programs. These programs handle an estimated 2 million persons at any given point in time. The economic dimension of disability is equally massive. Total expenditures for disability-related transfer payments and health care for thedisabled reached $114. 2 billion in 1975 (Berkowitz and Rubin, 1978), a hefty7. 5 percent of the gross national product (GNP). These expenditures have beenrising at faster rates than the GNP. They were $69 billion in 1970 and only $39 billion in 1967, representing 6 percent and 4. 9 percent of the GNP, respectively, in those two years. Regarding the sources of the $114. 2 billion spent in 1975,$56. 7 billion came from the federal government (including matching funds),$13. 7 billion from state and local governments, and $43. 7 billion from theprivate sector. Two factors influence these figures: numbers of beneficiaries andlevels of benefits. As a percentage of governmental expenditures in the United States, income support for the disabled grew from 5. 8 percent to 8 percentduring 1968-1978 (Haveman et al., 1984). The annual rate of growth during thatperiod was 6. 3 percent in real terms. To place these estimates in a comparativeperspective, the rates of growth in the percentage of governmental expendituresfor income support for the disabled amounted to 0. 5 percent in the United Kingdom, 5. 3 percent in Germany, 12. 1 percent in Sweden, and 18. 6 percent in the Netherlands. Society has evolved certain policies, programs, and professions that address the prevention of disability and the alleviation of its consequences. Inthe United States, which is a democratic, pluralistic society, these developmentshave been incremental and uneven, producing an unintegrated set of programsthat are not unlike immiscible liquids that defy integration. Adapted from varying traditions (but mostly European in origin), the programs as a body are characterized by serious gaps and unnecessary overlaps. In spite of the substantial prevalence and consequential effects of disability on individuals, families, and society, related conceptual and theoreticaldevelopments are of recent origin. The field is much in need of a theory toguide and advance research, to enhance understanding on the part of the professions and the public at large, and to better focus related policies and programs and improve their effectiveness. By theory I do not mean speculationbut rather a set of interrelated concepts and empirically testable propositionsthat describe the phenomenon of disability and explain variance in itsoccurrence. Fundamental to the development of such a theory is a conceptualanalysis to clarify the nature of disability and its dimensions. This paperaddresses that objective. DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 310About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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CONCEPTUAL HISTORY Early attempts at conceptualizing disability and its dimensions were prompted by influences from several sources. Three are particularly important:rehabilitation, chronic diseases, and compensation and insurance benefits. Therehave been important shifts in the concept and programs of rehabilitation fromthose espoused in the Vocational Rehabilitation Act of 1920. This act rejectedcalls for a comprehensive program that would include medical and surgical services and limited the concept of rehabilitation in the main to vocational training. The act was administered by state departments of education along withvocational education. There followed a move to the concept of comprehensiveservices, which allowed for ''corrective" surgery, therapeutic treatments toreduce or eliminate disability, hospitalization, education, equipment, licenses,and tools (Switzer, 1965). State commissions for rehabilitation were establishedas separate agencies or placed under departments of public welfare. In 1953 the U. S. Department of Health, Education, and Welfare assumed responsibility forthe reorganized Federal Security Agency, including the administration ofvocational rehabilitation. Another milestone was the Vocational Rehabilitation Act of 1954, which adopted a formula for federal-state financing. The actpermitted "the establishment of comprehensive rehabilitation facilities; the creation of specialized clinics of speech, hearing, cardiac, and other disorders; and the development of a variety of services that at one time would haveseemed unattainable" (Switzer, 1965). The 1943 and 1954 rehabilitation acts led to the infusion of funds into the field of rehabilitation, the spread of comprehensive centers, and theinvolvement of many disciplines —including medicine, education, social work, psychology, vocational counseling, occupational therapy, and nursing, amongothers. Inevitably, this broad professional grouping led to competition overresources and concerns over the protection of professional domains (e. g., Hamilton, 1950; Wright, 1959). (Indeed, the issue of domains continues to linger and is expressed in a variety of forms [Nagi, 1975]. ) These developmentsset the stage for attempts at conceptual distinctions to delineate the roles of thedifferent professions and to explain their interrelationships. For example,Hamilton (1950) distinguishes between disability and handicap: disability is "acondition of impairment, physical or mental, having an objective aspect that canusually be described by a physician. It is essentially a medical thing"; ahandicap is "the cumulative result of the obstacles which disability interposesbetween the individual and his maximum functional level. " Hamilton goes on tosay that "it is the handicap, not the disability, that gives impairment its welfaresignificance. " Several notable efforts during the 1950s contributed to advances in conceptualization and measurement of disability. During the first half of thedecade, the Commission on Chronic Illness (1957) conducted two comprehensive DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 311About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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surveys in Baltimore, Maryland, and Hunterdon County, New Jersey. One of the objectives was to obtain estimates for the "prevalence of illness anddisability resulting from chronic disease by diagnosis, degree and duration ofdisability. " Three kinds of measures of the disabling effects of chronicconditions were used in the evaluation: (1) limitations on the ability to perform11 selected activities of daily living; (2) limitations on overall functional capacity; and (3) limitations on the ability to work, keep house, or attend school (i. e., the person's usual major activity). The second measure remains one of thebest scales for independent living. The third measure of limitations in roles,referred to here as activities, is an approach that has been used for decades inthe National Health Interview Survey (National Center for Health Statistics,1987a). Interest in functional assessments during the 1940s and 1950s spurred the development of measures of functional deficits —what Deaver and Brown (1945) called "activities of daily living" (ADL). A variety of instruments wereconstructed including differing combinations of items (for an informativereview, see Gresham and Labi, 1984). A review of ADL scales led Hobermanand Associates to conclude in 1952 that "daily activity measurement will have passed adolescence only when functional tests are properly graded, scored, validated, and normed, and their all-round practicability and utilitydemonstrated. " More than 30 years later, Frey (1984) declared, "it is safe to saythat, with the exception of only a very few ADL scales, development in thisarea remains preadolescent. " In addition to the work of the Commission on Chronic Illness noted above, other notable efforts in the area include those of Lawton (1972), Lambert and colleagues (1975), and Katz and co-workers(1963, 1983). The decade of the 1950s was marked by mounting concerns over criteria and decisions regarding compensation and other disability benefits, which led toother conceptual attempts —for example, by the American Medical Association (AMA) Committee on Medical Rating of Mental and Physical Impairment(1958). The committee's work was in response to the needs of workers'compensation programs —which had been plagued by litigations — to develop standardized ratings legitimized by the professional and scientific standing of the AMA. The committee distinguished between impairment and disability by pointing out that "permanent impairment is a contributing factor to, but notnecessarily an indication of, the extent of a patient's permanent disability. " Tothe committee, "[c]ompetent evaluation of permanent impairment requiresadequate and complete medical examination, accurate objective measurementof function and avoidance of subjective impressions and non-medical factorssuch as the patient's age, sex, or employability. " Because the committee'sdomain was defined as that of impairment, disability was left without furtherclarification. What is important, however, is the reference to the functionaldimension. Such a reference was also included in a report by the Criteria Committee of the New York Heart Association DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 312About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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(1953), which described a complete diagnosis as accounting for etiological, anatomical, physiological, functional, and therapeutic aspects. Individualclinicians also developed approaches to measuring functional losses (e. g.,Mc Bride, 1963; Kessler, 1970). A CONCEPTUAL FRAMEWORK As the 1950s drew to a close, the situation was one of differing conceptions of disability and related phenomena and no shared concepts; anumber of terms were applied unsystematically and often interchangeably. Thelack of clarity in conceptual constructs was reflected in problems with criteriafor the evaluation of disability for compensation and other benefits. The various programs relied heavily on impairment schedules and lists for their decisions concerning disability in vocational roles and earning potentials. In a sense, thiscorresponds to the analogy of looking for a key in a place where there happensto be some light rather than where the key was dropped. In regard to workers'compensation programs, the AMA Committee on Medical Rating of Mental and Physical Impairment (1958) concluded that "impairment is, in fact, the sole orreal criterion of permanent disability far more often than is readilyacknowledged. " In a similar vein, the Subcommittee on Social Security of the House Ways and Means Committee (1959) gave the following instructions: The Subcommittee recognizes the difficulties of developing and enunciating criteria for the weight to be given non-medical factors in the evaluation of disability and the extreme sensitivity of this area. But the Subcommitteebelieves that the time has come, if it is not well overdue, to make a determined effort to develop and refine these criteria and make them available to the evaluators and to the public in the form of published regulations. The decade also witnessed provisions for research development in the 1954 Rehabilitation Act and in other programs, which introduced the research community more extensively to disability and rehabilitation issues. In the early 1960s, as part of plans for a large-scale study of decision making in the Social Security Disability Insurance (SSDI) program and in rehabilitation services for SSDI applicants and beneficiaries, Nagi (1964, 1965, 1969) built on existing knowledge to construct a framework of four distinct butinterrelated concepts: active pathology, impairment, functional limitation, anddisability. 1. The state of active pathology may result from infection, trauma, metabolic imbalance, degenerative disease processes, or other etiology. Such a condition involves (a) interruption of or interference with normal processes, and (b) the simultaneous efforts of the organism to regain a normal DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 313About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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state. Pathology then is not merely the surrender to an abnormal state of affairs but also the fight for health (Selye, 1956). Obviously,deficiencies in immune systems and other coping mechanisms canrender the fight for health ineffective. In modern health practices, theorganism is aided by surgical intervention, medication, and other formsof therapy to help regain equilibrium. Some means may become necessary over extended periods of time or indefinitely, as in the case of certain types of chronic diseases. 2. The concept of impairment indicates a loss or abnormality of an anatomical, physiological, mental, or emotional nature. The conceptcomprises three distinct categories: (1) all conditions of pathology,which are by definition impairments because such conditions involveanatomical, physiological, mental, or emotional deviation; (2) residuallosses or abnormalities that remain after the active state of pathologyhas been controlled or eliminated (e. g., healed amputations, residual paralysis); and (3) abnormalities not associated with pathology (e. g., congenital formations). Thus, although every pathology involves animpairment, not every impairment involves a pathology. Impairmentsvary along a number of dimensions that affect their influence on thenature and degree of disability. Important among these are the degreeof visibility and disfigurement, stigma, the predictability of the courseof the underlying pathology, the prognosis and prospects for recoveryor stabilization, threat to life, the types and severity of limitations infunction they impose, and the point of onset in the life cycle — congenital, early childhood, during the productive years, or later in life. 3. Functional limitations and impairments both involve function. The difference, however, is in the level at which the limitations aremanifested. Functional limitation refers to manifestations at the levelof the organism as a whole. Many tissues, for example, may have analtered structure or function without limiting the ability of theorganism as a whole. A significant number of muscle fibers mustbecome denervated before discernible weaknesses occur; the walls ofblood vessels must undergo a great deal of alteration before appreciable changes in the flow within these vessels ensure. Virtually an infinite number of similar examples can be noted. One could speakof limitations in function at the levels of molecules, cells, tissues,organs, regions, systems, or the organism as a whole. Althoughlimitations at a lower level of organization may not be reflected athigher levels, the reverse is not true. An individual who is unable toreach overhead because of tightness in the shoulder can be expectedalso to have abnormalities at the levels of tissues and cells that makeup the shoulder. It is important to note that limitations in function athigher levels of organization may result from differing impairmentsand limitations in function at the lower levels. For example, inability tolift a heavy weight may be related to mechanical problems in the lumbosacral region, or it may be the result of diminished cardiac output or pulmonary ventilation (Melvin and Nagi, 1970). Functional DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 314About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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limitations are the most direct way through which impairments contribute to disability. However, as mentioned earlier, certaindisfiguring or stigmatizing impairments can lead directly to disabilitywithout the involvement of a functional deficit at the level of theorganism as a whole. 4. Disability refers to social rather than to organismic functioning. It is an inability or limitation in performing socially defined roles and tasksexpected of an individual within a sociocultural and physicalenvironment. These roles and tasks are organized in spheres of lifeactivities such as those of the family or other interpersonal relations;work, employment, and other economic pursuits; and education,recreation, and self-care. Not all impairments or functional limitations precipitate disability, and similar patterns of disability may result from different types of impairments and limitations in function. Furthermore, identical types of impairments and similar functionallimitations may result in different patterns of disability. Several otherfactors contribute to shaping the dimensions and severity of disability. These include (a) the individual's definition of the situation andreactions, which at times compound the limitations; (b) the definitionof the situation by others, and their reactions and expectations — especially those who are significant in the lives of the person with thedisabling condition (e. g., family members, friends and associates,employers and co-workers, and organizations and professions thatprovide services and benefits); and (c) characteristics of the environment and the degree to which it is free from, or encumbered with, physical and sociocultural barriers. Further clarifications of some issues concerning this framework were made earlier (Nagi, 1975); others are added here in response to questions andmisinterpretations arising in professional meetings or in print. First is the issueof its applicability to mental and emotional conditions. The question reflects theposition that mental and emotional conditions are more socially grounded thanthose of an anatomical and physiological nature (e. g., Lemert, 1951; Sullivan,1953; Scheff, 1967; Szaz, 1974) and therefore do not conform to the samecharacteristic patterns. Equally important is that, except for organically beset conditions, indicators of pathology, impairment, and functional limitations are, so far, not separable in regard to mental and emotional conditions. In thesecases, pathology and impairment are inferred from manifestations at the level offunctional limitations. In psychiatric terminology there is reference to"functional" versus "organic" disorders. It is important to note, however, thatdistinctions between indicators of functional limitations and those of disabilitycan be established with sufficient clarity. Intelligence tests, scales ofpsychophysiological reactions, other psychometric tests, and clinicalassessments have been used to identify functional limitations independent ofwhether, and to what extent, a person is limited in performing expected rolesand tasks. DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 315About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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The second issue concerns distinctions between disability and other forms of inability. Consider, for example, work and employment, which are affectedby a variety of factors other than those identified in this framework. Ability orinability to perform social roles, vocational in this example, depends on aninteraction between a set of individual characteristics and factors of a situationalor environmental nature. A change in the economic or technological environments may lead to unemployment totally unrelated to health conditions. By the same token, family roles may be disrupted or altered by divorce,separation, or other expressions of incompatibility rather than impairment andfunctional limitation. It is important to reiterate that this framework is rootedwithin the context of health. Third is the observation that the term disability implies a change from prior higher levels of functioning and is not applicable to congenital and earlychildhood conditions. In this respect, distinctions have been made betweencongenital and "adventitious" inabilities (Carroll, 1961), the latter beingdis ability in the strict sense of the word. In this framework, however, the concept of disability is used in a generic sense to include those arising fromcongenital and early childhood conditions as well as those occurring later in life. The comparative reference for the former is the level of functioning of cohorts rather than of prior levels once maintained. A fourth issue concerns the lines of differentiation between functional limitations and disability and where such activities as those of daily living anduse of transportation fit within the concepts of social roles and tasks. To Parsons(1958), "a role is the organized system of participation of an individual in asocial system. " Roles, looked at that way, constitute the primary focus of the articulation and hence interpenetration between personalities and social systems. Tasks on the other hand, are both more differentiated and more highly specified than roles, one role is capable of being analyzed into a plurality of different tasks... [it] is legitimate to consider the task to define the level at which the action ofthe individual articulates with the physical world.... A task, then, may be regarded as that subsystem of role which is defined by a definite set of physical operations which perform some function or functions in relation to a role. Sarbin and Allen (1968) differentiate between role expectations and role enactment. "Role expectations are comprised of the rights and privileges, theduties and obligations of any occupant of a social position in relation to personsoccupying other positions in the social structure.... Overt conduct, that is, what the person does and says in a particular setting is the first specification of therole enactment. " Typically each person performs multiple roles not onlybecause of occupying multiple social positions but also because each positioninvolves a role-set (Merton, 1957). Thus the position of a medical student "entails not only the role of a student in relation to his DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 316About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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teachers, but also to other students, nurses, physicians, social workers, medical technicians, etc. " The point to be made is that components of roles —expectations, acts, actions, and tasks —are learned, organized, and purposeful patterns of behavior and not isolated muscle responses (Sarbin and Allen, 1968). Some acts, actions,and tasks are role specific, whereas others are common to the enactment ofmore than one role. Activities of daily living are learned, organized, andpurposeful patterns of behavior. They are part of the set of expectations inherentin family, vocational, and a variety of other roles. Severe limitations in performing these tasks often result in reciprocal role relationships of dependency/assistance, which at times become contractual. The same reasoningapplies to driving, the use of public transportation, the use of means ofcommunication, and similar tasks, each of which separately does not constitutea social role but is part of many roles. Limitations in performing these tasks arecomponents of the concept of disability. The fifth issue concerning the disability framework relates to another criterion for differentiating the concept of disability from those of functionallimitations, impairment, and pathology. For this, it will be useful to considerdifferences between concepts of attributes and properties on the one hand andrelational concepts on the other (Cohen, 1957). Concepts of attributes andproperties refer to the individual characteristics of an object or a person, such as height, weight, or intelligence. Indicators of these concepts can all be found within the characteristics of the individual. Pathology, impairment, andfunctional limitations are concepts of attributes and properties. One need not gobeyond examining a person to identify the presence and extent of physiologicaland anatomical losses or disorders, or to assess limitations in the functioning ofthe organism. In contrast, indicators of a relational concept cannot all beaccounted for among the attributes of an individual. They includecharacteristics of other segments of the situation. Disability is a relationalconcept; its indicators include individuals' capacities and limitations, in relationto role and task expectations, and the environmental conditions within whichthey are to be performed. The sixth and final issue is the question of whether disability, as conceptualized here, is limited to work. By now, it should be clear that theanswer is no. Because of emphasis in public policy on concerns withdependence in economic and personal terms, and greater availability of supportfor studies of these dimensions, research developments were pushed largely inthe direction of work disability and problems in independent living. However,the concept is inclusive of all socially defined roles and tasks. For heuristic purposes, Nagi (1969) applied a stress curve (Koos, 1954; Hill, 1958) to illustrate the processes of disability. As depicted in Figure A-1, the line between (a) and ( b) represents the usual level of performance of an individual. The minor fluctuations are within the individual's margin of DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 317About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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tolerance. The major emphasis during such periods is on primary prevention to maintain performance at that level. At point ( b) a health condition occurs (disease or injury) that results in a deviation from normality that is beyond theindividual's tolerance and coping abilities. The condition is in an acute stage,and the major emphasis is on treatment until the pathology is eliminated orcontrolled as represented by point ( c). (Failure to control the pathology would, of course, result in death. ) An important feature of the stress curve is the angle of recovery, that is, the angle formed by the two lines ( b)-(c) and ( c)-(d). In many cases the recovery is complete; in others a residual impairment may beprecipitated. The angle of recovery implies a relationship between time andlevel of recovery. A smaller angle indicates shorter time and higher level ofrecovery, and vice versa. Once the condition has been stabilized after ( c), the major emphasis shifts from treatment to restoration and rehabilitation. FIGURE A-1 Applying a stress curve to illustrate the processes of disability. Adapted from Nagi, 1969; used with permission of Ohio State University Press. This model is most appropriate for injuries and diseases that have identifiable onsets and for those that have stable residuals. Other models arebetter suited for describing the increasingly prevalent, gradually progressivechronic conditions that are forcing reassessments of approaches in all phases of health care. In the natural history of these pathologies and the limitations they precipitate, points ( b) and ( c) in Figure A-1 become less, if at all, identifiable. The residuals are hardly stabilized, and the prognosis is less certain. The dottedline ( a)-(e) shows this pattern. The course of these conditions often involves acute episodes. The same curve can be used to illustrate the different forms of functional limitations: physical, sensory, emotional, intellectual, and so on, as well asdisabilities in the various roles and tasks (e. g., vocational, family, interpersonaland community relations, independent living). Such mapping requires DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 318About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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meaningful concepts, valid and sensitive measures, and longitudinal data. It should yield information useful for studying the natural history of disability,accounting for factors that influence its course, identifying the types of servicesand benefits needed, and timing these services and benefits for optimaleffectiveness. A FRAMEWORK FROM THE WORLD HEALTH ORGANIZATION In 1980 the World Health Organization (WHO) published a "manual of classification relating to the consequences of disease. " In an introduction to thismanual, Philip H. N. Wood points out that taxonomic approaches used in thedevelopment of the International Classification of Diseases were foundunsatisfactory. "Separate classifications of impairments and handicaps wereprepared" and "circulated widely in 1974. " The following excerpts from theintroductory remarks trace the steps that were to follow:... Responsibility for collating comments and developing definitive proposals was undertaken by Dr. Wood. These were submitted for consideration by the International Conference for the Ninth Revision of the International Classification of Diseases in October 1975. At this juncture the scheme incorporated a supplementary digit to identify disability, and the wholeapproach was acknowledged as being to a large extent experimental and exploratory. Having considered the classification, the Conference recommended its publication for trial purposes. In 1976, the Twenty-ninth World Health Assembly... approved the publication, for trial purposes, of the supplementary classification of impairments and handicaps as a supplement to, but not as an integral part of the International Classification of Diseases. The present manual, published under this authority, represents a considerable recasting of the detailed proposals submitted to the Ninth Revision Conference. (p. 13) The conceptual scheme in the WHO publication (1980) is organized around four concepts: disease, impairment, disability, and handicap. In Wood'swords, these four concepts are defined as follows: (i) Something abnormal occurs within the individual : this may be present at birth or acquired later. A chain of causal circumstances, the"etiology," gives rise to changes in the structure or functioning of thebody, the "pathology". Pathological changes may or may not makethemselves evident; when they do they are described as"manifestations", which in medical parlance, are usually distinguishedas ''symptoms and signs". These features are the components of themedical model of disease,... (ii) Someone becomes aware of such an occurrence : in other words, the pathological state is exteriorized.... In behavioral terms, the individual DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 319About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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has become or been made aware that he is unhealthy. His illness heralds recognition of impairments, abnormalities of the body structure and appearance, and of organ or system function, resulting from anycause. Impairments represent disturbances at the organ level. ... In the context of health experience, an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function. (iii) The performance or behavior of the individual may be altered as a result of this awareness, either consequentially or cognitively. Common activities may become restricted, and in this way theexperience is objectified. Also relevant are psychological responses tothe presence of disease, part of so-called illness behavior, and sicknessphenomena, the patterning of illness manifested as behavior by the individual in response to the expectations others have of him when he is ill. These experiences represent disabilities, which reflect the consequences of impairments in terms of functional performance andactivity by the individual. Disabilities represent disturbances at thelevel of the person. ... In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability toperform an activity in the manner or within the range considerednormal for a human being. (iv) Either the awareness itself, or the altered behavior or performance to which this gives rise, may place the individual at a disadvantage relative to others, thus socializing the experience. This plane reflectsthe response of society to the individual's experience, be this expressedin attitudes, such as the engendering of stigma, or in behavior, whichmay include specific instruments such as legislation. Theseexperiences represent handicap, the disadvantages resulting from impairment and disability.... In the context of health experience, a handicap is a disadvantage for a given individual, resulting from animpairment or a disability, that limits or prevents the fulfillment of arole that is normal (depending on age, sex, and social and cultural factors) for that individual. (pp. 25-29) The WHO publication includes a narrative section that outlines the history of the undertaking, the purposes, the conceptual framework, and the rationalefor classification. It also includes the classifications themselves for impairments(Code I), disabilities (Code D), and handicaps (Code H). ASSESSMENT OF FRAMEWORKS The two frameworks outlined here —which are identified in the literature with Nagi and Wood —have been the subject of comparisons and analyses by several writers (e. g., Duckworth, 1984; Frey, 1984; Granger, 1984). Theseanalyses are generally limited and frequently reveal that certain specificationsare not clearly understood. The difference is not only in semantics nor simplythat one framework is an extension of the other. There are also DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 320About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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important substantive differences. It is often difficult to communicate conceptual constructs within the same discipline, let alone across varyingdisciplines and professional fields, which may account for some of themisinterpretations that have been plaguing this area. The remainder of this paper assesses these frameworks in light of important criteria that govern conceptualization, classification, and theoryconstruction. Kaplan (1964) suggests three sets of criteria for assessingframeworks: norms of coherence, norms of correspondence, and pragmaticnorms. These criteria will be used as guides, and each framework will be examined individually rather than by a point-counterpoint discussion. Wood's scheme will be examined first. Table A-1 compares the Nagi and Woodtaxonomies. An important aspect of a framework's internal coherence is criteria that differentiate among concepts and categories. For Wood, a disease becomes animpairment when it is "exteriorized"; by that he means that "someone becomesaware of such an occurrence. ... Most often the individual himself becomes aware of disease manifestations... deviations may be identified of which the 'patient' himself is unaware... as screening programs are extended.... Alternatively, a relative or someone else may draw attention to disease manifestations. " By equating impairment with awareness, Wood is saying ineffect that impairments do not exist independently of someone's recognition ofthem. But what about asymptomatic disorders that have not been identified through screening or that go unnoticed by relatives and friends? Moreover, if"illness heralds recognition of impairments," what about impairments that arenot associated with active pathology? Why does Wood's definition of impairment— "any loss or abnormality of psychological, physiological, or anatomical structure or function" —fail to make reference to awareness? It seems that this distinction confuses the conditions themselves with an awareness of theirpresence and the behavioral patterns evoked by such awareness. Wood's criterion for differentiating between impairment and disability is "objectification," which he describes as "the process through which a functionallimitation expresses itself as a reality in everyday life, the problem being madeobjective because the activities of the body are interfered with" (WHO,1980:28). The term "objective" is the contrast of ''subjective," and everyconcept has both objective and subjective aspects. For diseases and disorders, indicators of these two aspects are grouped as signs and symptoms, respectively. Similarly, impairments, functional limitations, and disabilities canall be considered from objective or subjective viewpoints. It is not clear thatobjectification is equated with an individual's awareness of a change in identitywhen disability takes form. An important question is what do objective andsubjective distinctions and awareness have to do with differences betweendisease and impairment on the one hand and disability on the other? Again,criteria related to the conditions themselves and the levels of DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 321About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 322About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 323About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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organization at which they are manifested are confused with awareness and behavioral patterns. Confusion in these verbal definitions of the concepts spillsover into the operationalization of the classification system. Disability turns into handicap as it becomes "socialized" in that "(i) some value is attached to departure from a structural, functional, or performancenorm, either by the individual himself or by his peers in a group to which herelates; (ii) the valuation is dependent on cultural norms ... ; [and] (iii)... the valuation is usually to the disadvantage of the affected individual" (WHO,1980:29). In these distinctions, Wood fails to differentiate between limitations in social performance and the causes for these limitations, that is, between the "what" and the ''why. " A concept is concerned with the what —a person is unable to work or is limited in performing a family role. Valuations,stereotyping, discrimination, service and benefits programs, labor marketconditions, technological developments, architectural barriers, and other factorsin the sociocultural and physical environment are causal influences that canfacilitate or inhibit the optimal social performance of which a person is capable. These factors are part of why social performance becomes limited. Therelationships between the "what" and the "why" are empirical, in that they are subsumed under testable propositions, rather than definitional, in the sense of being subsumed under a concept. Wood is correct in stating that "it is a fundamental principle... that classification is subordinate to a purpose. " However, as Hempel (1963) pointsout, "classification in empirical science, is subject to the requirement offruitfulness. The characteristics which serve to define the different types shouldnot merely provide neat pigeonholes to accommodate all the individual cases inthe domain of inquiry, but should lend themselves to sound generalizations. "These points are clarified further by Kaplan (1964): What makes a concept significant is that the classification it institutes is one into which things fall, as it were, of themselves. It carves at the joints.... [A] significant concept so groups or divides its subject matter that it can enter intomany and important true propositions about the subject matter other than those which state the classification itself. Traditionally, such a concept was said to identify a "natural" class rather than an "artificial" one. Its naturalness consists in this, that the attributes it chooses as the basis of classification are significantly related to the attributes conceptualized elsewhere in our thinking. Things are grouped together because they resemble one another. A natural grouping is one which allows the discovery of many more, and moreimportant, resemblances than those originally recognized. Every classification serves some purpose or other.... [I]t is artificial when we cannot do more with it than we first intended. The purpose of scientific classification is to facilitate the fulfillment of any purpose whatever, to disclose the relationships that must be taken into account no matter what. DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 324About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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There are no meaningful resemblances that would justify grouping under the same concept "family role disability" and "occupational role disability" onone hand and "foot control disability'' and "crouching disability" on the other. How can "family role disability" and "occupational role disability" be assessedin the absence of expectations and what Wood refers to as valuations? Theenunciation of the categories that make up codes in these areas is in itself a statement of expectations and valuations. These and numerous other examples demonstrate serious problems with the concept of disability as outlined in the WHO framework. Ambivalence is acknowledged about "functional limitations,"which were regarded in an earlier draft "as being elements of disability" andwere later assimilated with impairments. As part of the impairment grouping,functional limitations are conceptualized at the organ level rather than at thelevel of the whole organism. In addition, disability includes a mix of social andorganismic performance. Thus the framework lacks a coherent and clearlydelineated concept of performance at the level of the organism. This representsa major gap because functional limitations conceptualized at this level representthe most crucial link between impairment and social performance. The definition of "handicap" leads the reader to expect major, if not exclusive, emphasis on factors in the sociocultural and physical environment — stereotyping, prejudice, discrimination, employment opportunities, and otherkinds of barriers. The closest category to this conception is "social integration,"but even there the emphasis is still on the individual's impairment andlimitations. In some other categories, classification becomes exclusively that ofseverity of impairment and limitation in function —for example, restrictions in mobility to one's neighborhood, dwelling, room, or chair. Finally, the categories included under the handicap rubric significantly overlap with some of thoseunder disability, such as in the case of family and occupational roles. Some of the categories included under the handicap concept actually represent summaries of items included under other concepts. Every concept hasan "attribute space" (Lazarsfeld, 1972), which comprises its dimensions andindicators or manifestations. When a number of indicators of a particularconcept are combined in a typology or a larger category —which is by necessity more abstract —the newly created typology or larger category remains within the attribute space of the same concept. Consider, for example, several categories under "orientation handicap," which is no more than an attempt tocombine a number of functional limitations, impairments, and diseases. Furthermore, the attempt to combine several limitations, their severities,compensatory aids, and the help of others is a recipe for a cumbersomeclassification. The elements of compensatory aids and help from others couldhave been handled in simpler ways without loss of information or precision. Simplicity without loss is an important norm of coherence. DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 325About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Another important norm of coherence concerns the way a conceptual scheme is integrated into existing knowledge. This criterion need not be appliedin a conservative manner that shuts out real breakthroughs. A new frameworkmay be consistent with existing one(s), it may be different in part, or it may bealtogether different. The test of integration serves at least two purposes: (1) itadds to the cumulative process that advances the development of knowledge, and (2) it can help avoid compartmentalization, duplication of effort, and, worse, confusion. Wood's conceptual framework and classification scheme failto meet this requirement. Such statements as "the confusion ... stems largely from the lack of a coherent scheme or conceptual framework" and that thepurposes of surveys and studies in determining eligibility for benefits in the United States have been "to identify categories or groups of people fulfillingpredetermined criteria; words of this type have, therefore, been concerned morewith assignment than with evaluation" do not reflect the status of knowledge atthat time. Frameworks existed prior to his initiative, and studies and surveysconducted during and since the 1950s have paid considerable attention tomeasurement (e. g., Commission on Chronic Illness, 1957; Trussel and Elinson,1959; Srole et al., 1962; Nagi, 1969). By the mid-1970s, there was much more in the literature, especially in the United States, than can be justifiably dismissed in a short paragraph. A systematic review would probably havehelped Wood's scheme by building on existing foundations, avoiding many ofthe problems identified above, and fitting the results into a fairly well-developed body of knowledge. So far this discussion has focused on conceptualization and classification, definitional distinctions, resemblances among items and categories groupedunder particular concepts, and the ways in which the whole framework does ordoes not fit within existing knowledge. Also of importance are norms ofcorrespondence that refer to how a framework "fits the facts. " "Science isfundamentally governed by the reality principle" (Kaplan, 1964). These normsapply to the results of empirical research based on concepts defined and operationalized in the manner outlined in the framework. Such research may be aimed at identifying the antecedents or consequences of the various concepts inthe framework. Through the process of inquiry and verification, the adequacy ofconcepts, classifications, and propositions are put to the tests ofcorrespondence. It is too early to assess Wood's framework in view of thesecriteria. The application of pragmatic norms would be similarly premature;these pertain to the working of a framework —what it can do to advance scientific developments and guide actions. It is important to note, however, thatthe problems in coherence identified above do not bode well for the frameworkto adequately fulfill correspondence or pragmatic criteria. Claims of support by individuals, associations, or other organizations do not confer validity. "It must be kept in mind that the validation of theory —or of any other scientific belief —is not a matter of any official decision, the DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 326About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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deliverance of a solemn judgment" (Kaplan, 1964). It is only through inquiry and evidence that frameworks can prove their worth. The developmental historyof this framework, as cited by Wood, raises serious questions about the role of WHO's committees. If the present manual, published by WHO, "represents aconsiderable recasting [emphasis added] of the detailed proposals submitted to the Ninth Revision Conference," one has to wonder about the ability of the Conference to approve frameworks of concepts and terminology that meet Kaplan's criteria for classification. An unfortunate outcome is reintroducingconfusion in concepts and terminology just as researchers, governmentagencies, and policy analysts have started to make significant gains towardshared concepts and common frames of reference. Attempts to meet norms of coherence in Nagi's framework are embodied in the review of conceptual history, from which the framework evolved, as well asin the conceptual distinctions and clarifications presented in earlier sections ofthis paper. The literature review places this framework within existingknowledge, and the criteria of differentiation among concepts reveal the logic ofits internal structure. A repetition of this discussion here would be unnecessary. Suffice it to say that this framework is consistent with conceptual and definitional discussions that have appeared during the last quarter of a century, including those by economists, historians, physicians, political scientists, andsociologists (e. g., Burk, 1967; Howards et al., 1980; Berkowitz, 1987; De Jong,1987; Johnson, 1987; Haber, 1988, 1990). It is consistent with concepts used inmajor national surveys (e. g., Social Security Administration, 1981, 1982) anddefinitions of work disability by the U. S. Bureau of the Census. Inquiries clarify concepts and theoretical frameworks through successive approximations that involve cycles of operationalization, empirical testing, andfurther specification. The evolution of this framework has been and continues tobe subject to this process of improving correspondence among theory, concepts,and facts. Neither time nor space would allow for a comprehensive survey ofstudies and results that derived conceptual orientation from this framework. DISABILITY CONCEPTS REVISITED: IMPLICATIONS FOR PREVENTION 327About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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B Dissent and Response Appendix B consists of two parts. Part 1 is a dissenting statement prepared by committee member Deborah Stone. Part 2 is a response to that statement by the other 22 members of the committee. PART1: DISSENT FROM THE REPORT OF THE COMMITTEE Deborah A. Stone I dissent from the majority report for two reasons. First, I think the general quality of the report is poor. It purports to be a comprehensive agenda fordisability prevention when in fact it suggests only a narrow approach to the problem. The "Summary and Recommendations" is a bland consensus document whose primary goal is to avoid controversy. The recommendationsare mostly ritual calls for more leadership, professional training, data collection,research, and public education. They neglect more concrete and direct socialpolicies that could prevent and mitigate disabilities. Moreover, many of thereport's major recommendations are not supported by empirical evidence andwere not the product of any serious investigation by the committee. Second, the process of studying the problem and drafting the report did not meet the institution's standards of scientific objectivity and freedom from political pressures. The sponsors and funders of the study asked the committee to prepare a broad agenda for disability prevention; however, they structured thetask and exercised influence over the committee and staff so as to produce areport that would bolster their own political agendas. DISSENT AND RESPONSE 328About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Critique of the Report The agenda suggested in the majority report is composed primarily of vague slogans (e. g., "enhance the role of the private sector," "critically assessprogress") and calls for more research, training, education, data collection, andcoordination. Only 7 of the 27 recommendations (nos. 16 through 22) wouldprovide services directly to people who could benefit from them, or woulddirectly prevent disability. The remaining recommendations call for more bureaucracy, more training programs, and more jobs for educated, middle-class, mostly nondisabled people. The report fails to set an agenda or even to suggest how policymakers might go about setting one. It merely provides a long list of things that could bedone, without any indication of the relative importance of the variousdisabilities or the relative effectiveness of the various prevention measures, orany discussion of how policymakers ought to think about evaluating thesequestions. The "conceptual model" of disability developed in the report (amodel that has been around since 1969) is useless as a policy tool. It provides no guidance for setting priorities among the items in the "wish list" of new research, data collection, training, and services that the committee recommends,nor does it suggest any criteria for setting priorities among the many types ofdisabilities discussed in the report. Although the report pays lip service in many places to social, cultural, physical, and legal barriers as causes of disability, there is no analysis of any ofthese factors in the report. Important topics that are neglected in the reportinclude the following: 1. Handicap discrimination is now a major legal field, with federal and state statutes, a sizable body of case law, and scholarly studies of thenature and impact of discrimination as well as the usefulness andlimitations of civil rights remedies. The report makes brief mention ofthe Americans with Disabilities Act but provides no analysis of howand to what extent job market barriers prevent people withimpairments from working. Apart from recommendation 26, whichcalls only for educating the public about the civil rights of the disabled, not one of the recommendations deals with discrimination, or with defining, enforcing, or funding the enforcement of civil rights. 2. Although many statements in the body of the report recognize the importance of access to medical care in preventing disability, the only recommendation to deal with this problem (no. 16) calls forcomprehensive health services for mothers and children. Arecommendation for universal health insurance that had been in earlierdrafts was dropped from the final report. No recommendation dealswith access to health insurance for people with chronic disease and disabilities, despite the acknowledged severity of this problem in Chapter 8. DISSENT AND RESPONSE 329About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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3. The report makes no assessment of major national efforts in adapting buildings and public transit for accessibility. (Four sentences in Chapter 4 assert that adaptive devices and environmental modifications are useful and essential components of a prevention program. ) 4. There is no analysis of occupational causes of disability, although they are known to be important factors in injury and some chronic disease. The major national effort to prevent occupationally caused disabilities(the Occupational Health and Safety Act, in place since 1973) isignored in the report. 5. There is also a major national effort to prevent what might be called secondary learning disabilities, in the form of the Education for All Handicapped Children's Act and the early intervention program addedin the 1986 amendments to that law. The aim of these programs is toensure that children with physical, developmental, and emotionaldeficits receive whatever services are necessary for them to derive maximum benefit from their education and to prevent their being handicapped later on in social, intellectual, and vocational skills. Thesetwo programs merit half a page in Chapter 4. The report neither evaluates the experience of these programs nor considers how to makebetter use of them to prevent disability. 6. Within the area of injury control, automobile safety programs, various methods to curtail drunk-driving, and gun control measures areextremely important aspects of disability prevention. Although thereport mentions these measures, it does not examine the largeempirical literatures relevant to them. Nor does the report simplyrecommend that programs be instituted in these areas, although, as Ishow below, the committee makes recommendations for major national programs in other, less controversial areas (research, education, and training) without examining the empirical evidence ofneed or effectiveness. 7. The report neglects (except for some cursory mentions with intense obfuscation) prenatal genetic testing, mass screening for genetic defects, and abortion of affected fetuses. I take up this topic in more detail below because it is the issue that most clearly revealed thepoliticization of the committee's deliberative process. Bland as the recommendations are, there is still a puzzling disparity between the body of the report and its recommendations. Most of the report isconcerned with epidemiological and clinical information of the sort that wouldbe useful in designing primary prevention programs (i. e., preventing disabilitybefore it happens). Most of the recommendations, on the other hand, are aimednot at primary prevention but at developing the "infrastructure" for a preventionpolicy —that is, data bases, research programs, training programs to develop manpower, government leadership programs, and coordinating agencies. The decision to focus the recommendations on infrastructure instead of DISSENT AND RESPONSE 330About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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primary prevention appears to be a post hoc rationalization introduced half-way through the study process to relieve the committee of contentious debates aboutspecific policies of primary prevention —for example, prenatal testing and abortion, gun control, national health insurance, and drug abuse programs. I saythis because almost all of the recommendations that concern infrastructure aretotally undocumented, and an examination of the body of the report shows that the committee spent no time collecting and analyzing information about infrastructural components. For example:  Recommendation 2 calls for an "enhanced role for the private sector," including advocacy groups, the media, voluntary agencies,philanthropies, and business. Nowhere does the report describe oranalyze the current role of media, voluntary agencies, orphilanthropies. Advocacy groups are mentioned a few times, notablythe National Council on Disability, which cosponsored this study, but there is certainly no analysis in the report of the number, range of activities, or effectiveness of advocacy groups in preventing disability. The report mentions a few private employment programs for peoplewith disabilities as good examples, but there is no inquiry into thescope of these programs, how many people they employ, whether theyare cost-effective, and whether they have lasting effects.  Recommendation 15 calls for establishing a major, university-based training program for disability research. The report itself provides noinformation or analysis of the nature and scope of existing disabilityresearch and training programs.  Recommendations 23 and 24 call for upgrading medical education and training of physicians and allied professionals, but the committee madeno inventory of existing training programs and curricula and the reportprovides no documentation that there is anything wrong with them. Inseveral chapters, there are categorical statements to the effect that there is a shortage of personnel or programs, but no data are provided. These recommendations (and others calling for more research and grants) easily found their way into the report's conclusions, not because they emergedfrom reasoned inquiry but because they offend no one. One might even say theybenefit primarily the people who wrote them. In response to a previous draft of this dissent, a staff member replied: Indeed, the Committee did not undertake a systematic review of all the disability research training programs. Rather, among the Committee members there are several who are major figures in disability research training in the U. S. Their testimony on this subject was thought by the Committee to be well informed and adequate. This attitude is emblematic of what was wrong with the whole committee process. Instead of engaging in genuine empirical inquiry, the committee DISSENT AND RESPONSE 331About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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accepted as evidence the informal opinions of its own members about a question in which they have a personal and institutional stake. Critique of the Process Many of the inadequacies and omissions detailed above can be explained by the process of study and deliberation that produced this report. The studywas cosponsored by the Centers for Disease Control (CDC) and the National Council on Disability; funding came exclusively from CDC. I believe thissponsorship constrained the committee in some very concrete ways and led to abiased report. The sponsors commissioned a report that would "develop a national agenda for prevention of disabilities. " However, the Statement of Task theyprovided (see part 2 of this appendix) defined a limited set of approaches to disability prevention for the committee to consider. Moreover, it specified in advance of the committee's deliberations what some of the recommendationsshould be. The statement of task set the structure of the report from the beginning by requiring a focus on data collection of the kind CDC already does. Three of thefive tasks (nos. 1, 3, and 4) involved assessing traditional epidemiologicalinformation about the incidence, prevalence, and costs of disability. Two tasks(nos. 3 and 5) specifically asked the committee to "develop recommendationsfor" establishing a national surveillance system and applied research programs,and for a "strong, effective, coordinated effort for prevention of disability. " One task (no. 2) asked for specific case studies of prevention activities in injury, chronic disease, and developmental disabilities, and two tasks (nos. 1 and 3)asked for a study of so-called secondary disability, or the additional disabilitiesthat are sometimes caused by another disability. In addition, although CDC didnot state this as part of the task, it really wanted the injury case study to focuson spinal cord and traumatic brain injuries, for which it already had asurveillance program, and it so informed the committee. Thus, the committee was not free to examine the complex, multifaceted problem of disability and come to its own conclusions about which problemsand approaches ought to have priority in the report. Indeed, a preliminary tableof contents for the final report, based on the statement of task, was developedby the Institute of Medicine (IOM) staff and distributed at the first committeemeeting. Also at that meeting, the committee was immediately divided intoworking groups corresponding to the chapter outline. Although it chose later toadd the chapters on the conceptual model of disability and chronic disease, the committee never changed the structure of the final report from the original outline prepared before it had had any discussion. DISSENT AND RESPONSE 332About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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The first recommendation of the report is that the CDC "assume the lead responsibility for implementing the national agenda for the prevention ofdisability. " Yet, as is evident in the body of the report, the committee neverconsidered the relative merits and disadvantages of locating a nationalprevention program in the CDC as compared with other agencies. For example,it did not discuss the implications of locating leadership for a disability prevention program in the Office of the Surgeon General (traditionally thought to be the chief disease prevention agency) or of locating it in a health agency asopposed to a Labor Department agency (e. g., the Occupational Safety and Health Administration) or a Justice Department agency (e. g., the Office of Civil Rights). Arguably, these and other agencies have as much experience withdisability prevention as the CDC —albeit in nonmedical models of disability prevention. To my knowledge, the CDC never asked explicitly to be cast in thelead role, but the fact that the committee did so unreflectively, with no researchinto the question, suggests that the committee was operating under the stronginfluence of its sponsor. Beyond the design of the task, the CDC constrained the committee in more immediate ways as well. CDC representatives attended the committee'smeetings and occasionally indicated their satisfaction or dissatisfaction with thedirection of the discussion. Committee members were told explicitly in onemeeting that the CDC wanted a report they could "wave on the Hill" to demonstrate their need for larger appropriations. Early in the course of the study, I was concerned that the emerging report neglected the whole topic of prenatal diagnosis and abortion. I made apresentation to the committee documenting the importance of access tocontraception, prenatal diagnosis, abortion, and prenatal care in the preventionof developmental disabilities. During the discussion of my presentation, a representative of the CDC told the committee, "We don't want a report that is controversial. " Nevertheless, with the encouragement of staff, I drafted a piece about these issues for the report. Besides being read by the entire committee, the piece wentback and forth between me and the staff for substantive editing. During one ofthese exchanges, I discovered that these drafts were being "blind copied" to the CDC. When I made this charge in an earlier draft of this dissent, the IOM staff produced a memorandum about the abortion draft on which the sponsors of thereport were blind copied. The staff maintain that only an "informational"memorandum and not drafts of the abortion section were passed to the sponsors. I, of course, cannot prove exactly what pieces of paper were circulated tosponsors, but clearly some communication between committee staff andsponsors was concealed from committee members. Moreover, the staffindicated to me in phone conversations during the course of the study that thesponsors were "concerned" about my draft and wanted it "toned down,"suggesting that committee staff were engaging in discussions DISSENT AND RESPONSE 333About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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about the content of the report with the sponsors. Regardless of how much was actually blind copied to the sponsors, one must ask why there was any blind copying at all during the course of this study. Is there any place for secrecy, for concealing communications between staff and sponsors, in a genuinelyscientific deliberative process? The topic of abortion is controversial, and was especially so during the period of this study, but it is nevertheless highly relevant to the report and to aprevention agenda. Genetic testing, prenatal diagnosis, and abortion of affectedfetuses are already being widely used to prevent the birth of children withsevere disabilities. Given the rapid pace of development of genetic technology,and the gap between our ability to detect serious diseases and to cure them, thistrend will continue. As welcome as these techniques are to many parents and public health advocates, they are very objectionable to some in the disability rights community, as well as to people who oppose abortion on any grounds. Prenatal genetic testing, mass screening for genetic defects, and abortion ofaffected fetuses have been major topics of debate in both the scientific andpopular press, and they will continue to be important topics in the 1990s. These controversies should be acknowledged and discussed, not ignored, in an agenda for disability prevention. A genuinely deliberative and scientificresearch effort would have sought more information and discussion rather than suppressing the whole topic. In my draft, I documented extensively theconnection between access to prenatal care, prenatal testing, and abortion on theone hand and reduction of disabilities on the other. But instead of building onthis draft, the committee and the Institute of Medicine suppressed it. There are a few brief mentions of the topic, almost hidden in the report, in such phrases as "genetic screening and counseling and associated services," or "pregnancytermination. " Yet there is not so much as a single full paragraph devoted to thistopic, although recommendation 17 expresses the committee's "belief" that"prenatal diagnosis and associated services, including pregnancy termination"should be available to all women. Unfortunately, this recommendation, like somany others, is not supported by any analysis in the body of the report. It is hard to say exactly why the topic of abortion was virtually omitted from the report. Many committee members were acutely uncomfortable withthe extensive discussion of abortion. Some of them, as well as one of thesponsors (the National Council on Disability), were strongly opposed to the ideathat prenatal testing and abortion might be used to prevent the birth of peoplewith disabilities. Others were opposed to discussing abortion in this reportbecause the topic is so controversial that it might deflect attention away fromthe rest of the report. One committee member strongly opposed use of the word "abortion" in the report and wanted the term "pregnancy termination" substituted instead. And of course the other sponsor, the CDC,DISSENT AND RESPONSE 334About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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made it plain during a committee meeting (if not in private meetings with committee staff) that it did not want anything controversial in the report. I believe that the Institute of Medicine, as a scientific advisory body, should inform policymaking bodies about the scientific aspects of controversiesand leave the ultimate political decisions to appropriate political bodies. Because this committee was so concerned about avoiding controversy, thereport fails to educate policymakers and the general public about the most basicscientific aspects of the abortion and disability controversy. This point is important beyond the Committee on a National Agenda for the Prevention of Disabilities. If a study committee of the National Academy of Sciences is prohibited from reporting, is afraid to report, or is pressured out ofreporting on relevant but highly controversial aspects of a scientific and socialproblem, it and the Academy lose their integrity as scientific bodies. PART 2: THE COMMITTEE'S RESPONSE TO THE DISSENT BY DEBORAH STONE The preceding dissent to the report of the Committee on a National Agenda for the Prevention of Disabilities focuses on two matters: (1) the quality of thecommittee's report and (2) the possibility that inappropriate influence by thesponsors of the study could have constrained the committee's ability to actindependently. In regard to the first matter, the report itself stands as thecommittee's response to Dr. Stone's critique. We believe that the study that thisreport documents fulfills the charge given to the committee by the Institute of Medicine and that the report has the potential for making substantialcontributions to the field of disability prevention. We do, however, addressbelow two specific points relative to the report's quality that were raised by Dr. Stone. As to the second matter, we, the remaining 22 members of the committee, believe that Dr. Stone's criticisms of the committee process lack an informedbasis —she is unable to judge what transpired during the committee's tenure because she did not participate in its deliberations. She attended only two of thesix meetings of the full committee —the first and part of the third —and none of the additional six subcommittee working group meetings. At the third meeting(July 31, 1989), Dr. Stone presented a paper that she had written on herproposal for a national agenda for disability prevention. A large portion of herpaper concentrated on calls to keep abortion legal, require Medicaid programsto pay for abortion, implement gun control policies, and establish some form ofnational health insurance. Her covering note stated, ''I'm sure not everyone will agree with my views, and it may be that I will want to write a minority report to accompany the main committee report " (emphasis added). Although we were led to believe that she would DISSENT AND RESPONSE 335About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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continue to participate in the committee process, and help address the issues raised in her paper, Dr. Stone attended no other committee or working groupmeetings. In an effort to accommodate her schedule and focus on her concerns(primarily the abortion issue), the committee even set up a special workinggroup meeting, but at the last minute Dr. Stone was unable to attend. The committee process Dr. Stone criticizes so strongly is a slow, often arduous consensus-building exercise in which a group of experts study an issueas outlined in the statement of task, or charge, provided to them by the Instituteof Medicine. Their findings, conclusions, and recommendations are thengathered together and presented in a report, which is subject to independentcritical review by an anonymous group of authorities in the field at issue,appointed by the Institute of Medicine and the National Research Council. Such scrutiny is required before a report is approved for release to ensure that the committee has addressed its charge appropriately and substantiated itsconclusions and recommendations. The committee process is notable for the extent of its discussions, debates, and even arguments about available evidence and the conclusions to be drawnfrom it. Committee members are selected to bring varying points of view and socontribute to a broad perspective on the problem at hand. But in the consensus-building process, these views are often shaped, and —in the best sense —"influenced," not by sponsors, who take no part in the often heated give-and-take of committee deliberations, but by the ideas and opinions of other experts who bring their combined knowledge and understanding to bear. Dr. Stone'slack of participation in this process appears to have led to her misconception ofthe role played by study sponsors and her view of their ability to constrain thecommittee's conclusions and eventual recommendations. In the case of ourcommittee, although sponsor representatives attended some meetings, theyparticipated only as resources; when appropriate, they were excused frommeetings so that the committee could discuss issues in their absence. Moreover,sponsor representatives did not attend working group meetings, during whichmost of the recommendation formulation work was carried out. The character,organization, and substance of the report clearly reflect the work of committeemembers alone; in addressing the committee's Statement of Task (see box) we made decisions about the content and organization of the report and how each point should be presented. The process was fair, and members' participation wasbroad and vigorous. No other committee member besides Dr. Stone, whoseexperiential basis for judgment must be considered extremely narrow,experienced feelings of constraint or pressure from the sponsors. Much of Dr. Stone's critique of the process stems from her displeasure with the committee's handling of the abortion issue and the revisions that weremade to the paper she submitted. She implies that the Centers for DISSENT AND RESPONSE 336About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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STATEMENT OF TASK The National Academy of Sciences/Institute of Medicine, through the Division of Health Promotion and Disease Prevention, will conduct a twenty-two month study to develop a national agenda for the prevention of disabilities. The study is to consider prevention and intervention strategies, emphasizing applied research in the development and evaluation of preventative interventions, rather than basic research. In conducting the study, the IOM shall: (1) Assess and evaluate the public health significance of primary and secondary disability in the U. S., and the current status ofactivities designed to prevent them. Consideration should begiven to incidence, prevalence, and cost. (2) Review current and projected prevention activities in jury, developmental disability, and chronic disease, includingintervention and prevention strategies used in other countries. Consider how these, or other activities, might assist in attaining the health objectives for the year 2000 andbeyond. (3) Identify critical gaps in the existing knowledge about the incidence, prevalence and cost of disability in America. Develop recommendations for the establishment of surveillance systems and applied research programs designed to prevent primary and secondary disability. (4) Evaluate the need for a framework for setting priorities for disability prevention programs based on incidence,prevalence, preventability, and economic cost to society, andconsider the role of the federal government and other sectors in implementing disability prevention activities. (5) Recommend a system for the development of a strong, effective, and coordinated effort for the prevention ofdisability. Consider whether a national coalition should beformed. Disease Control (CDC), one of the sponsors of the study, was somehow involved in revising her paper and removing "abortion" from the report —but she concedes also that she has no evidence for such a charge. Indeed, as Dr. Stone notes, some committee members expressed concern about the politicalrealities of recommendations on the subject of abortion and the potential fortheir affecting the impact of the entire report. What Dr. Stone does not commenton, because she was not present for most of it, was the intense discussion of thisissue among committee members at several points and the process leading to the consensus that was finally achieved, merging broad and opposing views (see recommendation 17 of the report, which DISSENT AND RESPONSE 337About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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calls for providing access to effective family planning and prenatal services, including pregnancy termination). CDC never exerted any pressure to removematerial from the report or to influence the findings of the committee. As forthe blind-copied correspondence Dr. Stone mentions, we consider this merelyan expeditious method for informing the sponsor of the status and progress ofthe committee's deliberations —not an attempt to conceal information. The information conveyed in that correspondence was routine and nonconfidential, and in no way violated the confidentiality of committee deliberations or led toconstraints in its independence of action. Dr. Stone raises two other troubling points that we believe should not go unaddressed. First, with respect to her allegation that recommendation 1 in thereport was made "unreflectively," we must once again note that Dr. Stone didnot participate in the discussions that led to this recommendation and thereforehas no knowledge on which to base this judgment. In addition, the committeewas asked not to assess the disability-related programs of all federal government agencies but instead to "recommend a system for the development of a strong, effective, and coordinated effort for the prevention of disability. " Inexecuting this part of our charge, we came to realize that, far from showingpreference for a sponsor, we had developed something of a bias againstrecommending CDC leadership in order to avoid any appearance ofunwarranted preference. Objective consideration, however, of the merits of CDC leadership (its demonstrated strength and success in prevention activitiesthrough epidemiology, surveillance, and technology transfer, and its emphasis — unlike most other federal disability-related programs —on prevention rather than service delivery or rehabilitation research) led to the committee'srecommendation that the existing Disabilities Prevention Program at CDC beexpanded to serve as the focus of a National Disability Prevention Program. In arriving at this judgment the committee called on the expertise and knowledge of its members to compare administrative structures and operationsof some of the federal agencies that might accommodate a National Disability Prevention Program. Among our ranks are a former U. S. surgeon general andassistant secretary for health, a former director of the National Center for Health Statistics, and two former directors of what is now the National Institute on Disability and Rehabilitation Research. As is common in considering the organization, coordination, and development of federal programs, thecommittee relied on these experts to provide first-hand experience in these areasand supplement the limited documentation available in the public domain. A second point Dr. Stone raises regarding the quality of the report is that of the strategy developed by the committee to formulate the national agenda ondisability. As background to this matter, it is important to understand that mostof Dr. Stone's substantive comments and recommendations focus on primaryprevention —for example, prenatal testing and abortion, gun control,DISSENT AND RESPONSE 338About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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and national health insurance. The committee, however, decided to take a different approach. As the preface of the report notes, [t]his report goes beyond the traditional medical model to consider and address the needs of people with disabling conditions after those conditions exist and after they have been "treated" and "rehabilitated. " Prevention of the initial condition (primary prevention) is certainly important, but the emphasis in this report is on developing interventions that can prevent pathology frombecoming impairment, impairment from becoming functional limitation, functional limitation from becoming disability, and any of these conditions from causing secondary conditions. Theoretically, each stage presents an opportunity to intervene and prevent the progression toward disability. Thus, the report sets forth a model developed by its authoring body, the Committeeon a National Agenda for the Prevention of Disabilities, that describes disability not as a static endpoint but as a component of a process. One impetus for the committee's decision on its approach came from the sheer size of the charge it had to address. We decided that perhaps the bestcontribution we could make was to, first, describe the significance andmagnitude of disability as a public health issue; second, describe a conceptualframework for consideration of disability prevention, taking into account quality of life and the strong emphasis the committee wanted to give to the social and other risk factors so essential to the causes of disability; and, third,develop recommendations that would serve as an infrastructure for a nationalprogram for prevention. By infrastructure, we mean the leadership,coordination, surveillance, research, personnel development, and public supportneeded for such a program, which would provide a framework for a long-term,comprehensive, and coordinated effort involving specific interventions. Thus,we did not formulate exhaustive lists of interventions for each area of disabilityaddressed in the report (although the "focus chapters" on developmentaldisability, injury, chronic disease, and secondary conditions do presentinformation on various types of intervention strategies, including some primaryprevention, and their development status or proven effectiveness). Indeed, it is the report's focus on secondary and tertiary prevention that helps to set it apart from many other efforts in the field and, we believe, constitutes a majorcontribution to disability prevention for those individuals who already havepotentially disabling conditions. It is regrettable that Dr. Stone chose not to continue active participation in the committee and contribute more fully to its work. Many of the points sheraised in her July 1989 paper appear in the report; see, for example, therecommendations on access to care in Chapter 9. Her views undoubtedly would have been better served, however, by fuller participation in the collegial deliberative endeavor that is the hallmark of this institution's consensus-building committee process. DISSENT AND RESPONSE 339About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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C Committee Biographies ALVIN R. TARLOV (Chair) received his bachelor's degree from Dartmouth College and his medical degree from the University of Chicago. Following his internship and residency in internal medicine, he spent five years in hematologic research, partly at the University of Chicago and partly in the Department of Biological Chemistry at Harvard Medical School. In 1968, Dr. Tarlov became professor and chairman of the Department of Medicine at the University of Chicago, a post he held for thirteen years. In 1975, he began afive-year term as chairman of the Task Force on Manpower Needs of the Association of Professors of Medicine, and in 1978, he was appointed chairmanof the Graduate Medical Education National Advisory Committee to advise the Secretary of Health, Education, and Welfare on desirable numbers,distributions, and geographic placements of physicians in each specialty. Thecommittee's final report which was issued on September 30, 1980, is thestandard reference on physician manpower needs in the United States. Dr. Tarlov is a former Markle Foundation Scholar and Research Career Development Awardee of the National Institutes of Health. He has served assecretary-treasurer and president of the Association of Professors of Medicine and as chairman of the Federated Council of Internal Medicine. He is a member of the Association of American Physicians and of the Institute of Medicine. Heis also a member of the U. S. General Accounting Office Research and Education Advisory Panel and is a Master of the American College of Physicians. In January 1984, he became president of the Henry J. Kaiser Family Foundation in Menlo Park, California, and guided the foundation to a nationalleadership role in health promotion and disease prevention, until assuming hiscurrent positions in October 1990 as Director, Division of Health Improvement,The Health Institute, New England Medical Center; professor of medicine,Tufts University COMMITTEE BIOGRAPHIES 340About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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School of Medicine; and professor of health promotion at Harvard School of Public Health, Boston, Massachusetts. HENRY A. ANDERSON is chief of Environmental and Chronic Disease Epidemiology for the Wisconsin Department of Health and Social Services, aswell as adjunct professor of preventive medicine at the University of Wisconsin Medical School with a joint appointment in the Institute for Environmental Studies. He received his M. D. from the University of Wisconsin Medical School, Madison, and is a diplomate of the American Board of Preventive Medicine with an occupational medicine subspecialty. He is also a fellow of the American College of Epidemiology. Dr. Anderson currently serves on the Board of Scientific Councilors for the Agency for Toxic Substances and Disease Registries and the Surveillance Subcommittee of the National Instituteof Occupational Safety and Health Board of Scientific Councilors. His majorresearch interests include the epidemiology of chronic disease, chronic diseasesurveillance systems, workers' compensation and occupational disease andinjury, risk communication, and behavior modification. PETER W. AXELSON is president of Beneficial Designs, Inc., and a consultant to the rehabilitation community on all aspects of rehabilitationequipment design including testing, marketing, production and documentationof adaptive equipment for people with disabilities. He began his education atthe U. S. Air Force Academy, but after a climbing accident which resulted inparalysis from the waist down, he was honorably discharged and continued hisstudies at Stanford University, where he earned an M. S. in mechanicalengineering and design. Following graduation he worked as a rehabilitation engineer at the Palo Alto Veterans Administration's Rehabilitation Engineering Research and Development Center. Mr. Axelson has written numerous articles and is a member of the board of the Rehabilitation Engineering Society of North America (RESNA). His workin the design and development of rehabilitation equipment gained the Silver Medal of the British Royal Society of the Arts for his encouragement of arts,manufacture, and commerce in the area of special products. On behalf of the Paralyzed Veterans of America, he also participates in the development ofwheelchair standards as chairperson of the American National Standards Institute/Rehabilitation Engineering Society of North America (ANSI/RESNA) Wheelchair Standards Committee, and as the U. S. delegate to the International Standards Organization (ISO). HENRY B. BETTS is currently medical director and chief executive officer of the Rehabilitation Institute of Chicago, and Magnuson Professor andchairman of the Department of Rehabilitation Medicine, Northwestern University Medical School. He received his bachelor's degree from Princeton University COMMITTEE BIOGRAPHIES 341About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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in 1950 and went on to medical studies, earning his M. D. from the University of Virginia. Following a residency at the New York University Medical Center's Institute of Physical Medicine and Rehabilitation, he spent two years in the U. S. Navy and two years as a teaching fellow at New York University. He thenjoined the Rehabilitation Institute of Chicago, rising to the post he holds today. Dr. Betts is a member of several professional associations, including the American Academy of Physical Medicine and Rehabilitation, the American Congress of Rehabilitation Medicine (past president), the American Medical Association, and the American Spinal Cord Injury Association. He has servedon panels and committees of the National Institutes of Health and the National Academy of Sciences and has authored or co-authored more than 25publications in the field of rehabilitation medicine. He was recently honored for 25 years of service as leader of the Rehabilitation Institute. ALLEN C. CROCKER is the director of the Developmental Evaluation Center and senior associate in medicine at the Children's Hospital in Boston. Heholds a joint appointment as associate professor of pediatrics at Harvard Medical School and associate professor of maternal and child health at Harvard School of Public Health. His research interests involve the etiology of mentalretardation, systems of care for persons with developmental disabilities, andprevention. He has co-edited two books and has had substantial involvementwith planning and evaluation projects for the prevention of developmental disabilities, both nationally and in the programs of various states. GERBEN De JONG is director of research at the National Rehabilitation Hospital in Washington, D. C., and professor of the Department of Communityand Family Medicine at Georgetown University's School of Medicine. Earlier,he was a senior research associate and associate professor in the Department of Rehabilitation Medicine at Tufts University School of Medicine in Boston. Dr. De Jong's academic training is in economics and public policy studies. His main research interests are disability and health outcome measurement,health care utilization, disability policy, epidemiology, national health carepolicy, and medical ethics. He is the author of more than 100 papers on health,disability, and income policy issues but is perhaps best known for his seminalwork on disability policy and the independent living movement. His works haveappeared in such diverse publications as Business and Health, Scientific American, Stroke, and the Journal of Health, Politics, Policy, and Law. In 1985, he received the Licht Award for Excellence in Scientific Writing from the American Congress of Rehabilitation Medicine. JOHN F. DITUNNO, JR., is director of the National Rehabilitation and Research Center in Spinal Cord Injury (Neural Recovery and Functional COMMITTEE BIOGRAPHIES 342About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Enhancement) and director of the Regional Spinal Cord Injury Model System Center at Thomas Jefferson University. His major research interests are motorrecovery and functional prognosis and medical complications (e. g., deep veinthrombosis and pulmonary emboli prevention, atelectasis and pneumonia) inspinal cord injury. He is past president of the Association of Academic Physiatrists and the American Academy of Physical Medicine and Rehabilitation, and past chairman of the American Board of Physical Medicine and Rehabilitation. He is currently a member of the Advisory Committee for Injury Prevention and Control of the Centers for Disease Control and presidentof the American Spinal Injury Association. JOSEPH T. ENGLISH is chairman of psychiatry at St. Vincent's Hospital and Medical Center of New York and professor of psychiatry andassociate dean of New York Medical College. Prior to joining St. Vincent's, Dr. English was the first president and chief executive officer of the New York Health and Hospitals Corporation. He has also served as chief psychiatrist of the Peace Corps, director of health programs for the Office of Economic Opportunity in the Executive Office of the President, and administrator of the Health and Mental Health Services Administration of the Department of Health,Education, and Welfare. For the past two years, Dr. English has been chairmanof the Professional and Technical Advisory Committee for the Hospital and Accreditation Program of the Joint Commission on Accreditation of Health Care Organizations; since 1975, he has served as chairman of the Mental Health/Substance Abuse Service Committee of the Greater New York Hospital Association. He was also the first Chairman of the Council on Economics of the American Psychiatric Association and now chairs its Task Force on Prospective Payment. Dr. English is a fellow of the Institute of Medicine, National Academy of Sciences, American Psychiatric Association, American College of Psychiatrists,New York Academy of Medicine, and the American College of Mental Health Administration. A member of the board of directors of the Kennedy Child Study Center and the board of trustees of Sarah Lawrence College, he is also a Visiting Fellow of the Woodrow Wilson National Fellowship Foundation. He isa member of the editorial board of the Psychiatric Times and a consultant to the editorial board of the American Psychiatric Press, and has authored more than 100 papers and articles on health-related issues. DOUGLAS A. FENDERSON is a professor in the Department of Family Practice and Community Health and the School of Public Health of the University of Minnesota, as well as director of the Computer Center andassociate director for research of the Department of Family Practice and Community Health. As director of continuing medical education for the University of Minnesota School of Public Health, he helped develop a regional COMMITTEE BIOGRAPHIES 343About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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network of accredited continuing medical education sites. He has also served as chief of health services manpower, National Center for Health Services Research; director of the Office of Special Programs, Bureau of Health Professions Education; and, more recently, director of the National Institute of Handicapped Research (now the National Institute on Disability and Rehabilitation Research). MARGARET J. GIANNINI is presently deputy assistant chief medical director for rehabilitation and prosthetics for the Department of Veterans Affairs and director of the Rehabilitation Research and Development Service. In 1979, she was appointed the first director of the National Institute of Handicapped Research; she also founded and directed the Mental Retardation Institute of New York Medical College and established one of the first university-affiliated facilities at New York Medical College. Nationally, Dr. Giannini is past president of the American Association on Mental Retardation and the American Association of University Affiliated Programs. She has been actively involved as a member of the National Committee of Children with Handicaps of the American Academy of Pediatrics;she created the Prevention Committee of the American Association on Mental Retardation, and was appointed United Nations Interregional Advisor on Mental Retardation and Developmental Disabilities. She has also been named specialconsultant to the Mental Retardation Construction Unit of the National Institutes of Health, vice president for medicine of the American Association on Mental Retardation, consultant by special invitation to the President's Committee on Mental Retardation on Early Screening for Prevention, a memberof the Scientific Advisory Board of the Kennedy Child Study Center, and amember of the Institute of Medicine. She is a diplomate of the American Boardof Pediatrics and a fellow of the American Academy of Pediatrics. Dr. Gianniniis the recipient of numerous awards for her professional and humanitarianservices and achievements, including the Wyeth Medical Achievement Award,the N. Neal Pike Prize Award for Service to the Handicapped, the Isabelle and Leonard H. Goldenson Award for Technology Application to Cerebral Palsy, and the Distinguished Service Award presented by the President's Committeeon Employment of the Handicapped. MITCHELL P. La PLANTE is assistant research sociologist and director of the Disability Statistics Program at the Institute for Health and Aging,University of California, San Francisco. While a Social Science Research Council fellow, he received his Ph. D. in sociology from Stanford Universityand received an award from the American Sociological Association for the bestdissertation in medical sociology. He has authored several papers and reports concerned with disability. His research interests include conceptual COMMITTEE BIOGRAPHIES 344About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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and definitional issues in disability, the demography and epidemiology of disability, and disability policy. G. DEAN Mac EWEN is chairman and director of education in the Department of Pediatric Orthopaedics at the Children's Hospital in New Orleans. He is also professor and chief of the Section of Pediatric Orthopaedic Surgery, Department of Orthopaedic Surgery, at the Louisiana State University Medical Center, also in New Orleans. Dr. Mac Ewen is a member of the Soci été Internationale de Chirurgie Orthop édique et de Traumatologie, for which he serves as first vice president of the executive board and U. S. delegate; the American Academy of Orthopaedic Surgeons; and the American Orthopaedic Association, for which he chairs the Foreign Fellowship Committee. He alsochairs the Subcommittee in Pediatric Care of the Louisiana chapter of the American Academy of Pediatrics, and serves as an examiner of the American Board of Orthopaedic Surgery. Dr. Mac Ewen is a member of the Medical Clinical Care Advisory Board of the National Neurofibromatosis Foundation,and acts as Medical Advisor for the Louisiana-Gulfcoast chapter; he also holdsmembership in the Pediatric Orthopaedic Society and the Scoliosis Research Society. Before he assumed his present positions, he was medical director of the Alfred I. du Pont Institute and past president of the American Orthopaedic Association, the Scoliosis Research Society, and the Pediatric Orthopaedic Society. ELLEN J. Mac KENZIE is assistant director of the Health Services Research and Development Center and associate professor in the Department of Health Policy and Management, Johns Hopkins School of Hygiene and Public Health. She also holds joint appointments in biostatistics and in emergencymedicine in the School of Medicine. Her research interests include injuryseverity scaling and the evaluation of emergency medical and rehabilitation services for preventing death and disability associated with traumatic injury. She has authored several publications in these areas, including a recent report to Congress entitled Cost of Injury in the United States (with Dorothy P. Rice and Associates). Ongoing studies for which she is a principal investigator include(1) development and application of methods for evaluating the performance orregionalized systems of trauma care; (2) a multi-institutional, collaborativestudy of the long-term effects and rehabilitation needs of persons who sustainsevere lower-extremity fractures; and (3) development of a functionalimpairment index for traumatic injuries. Dr. Mac Kenzie is currently a memberof the board of directors of the Association of the Advancement of Automotive Medicine and past chair of the Injury Control/Emergency Health Services Special Primary Interest Group of the American Public Health Association. She also acts as an advisor to private and government agencies involved in the delivery and evaluation of rehabilitation services. COMMITTEE BIOGRAPHIES 345About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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GEORGE L. MADDOX, JR., is professor of sociology and of medical sociology (psychiatry) and chairs the University Council on Aging and Human Development at Duke University. He also directs Duke's World Health Organization/Pan American Health Organization Collaborating Research Centeron Aging and the university's Long-Term Care Resources Program. Associatedwith gerontology and geriatrics since 1959, he served as director of the Duke Center for the Study of Aging and Human Development from 1972 to 1982. He was a founding member of the initial National Advisory Council of the National Institute on Aging, has served as president of the Gerontological Society of America, has chaired the Sociology of Aging Section of the American Sociological Association, and has served as vice president of the Southern Sociological Society. From 1985 to 1989 he served as secretary-general andvice president of the International Association of Gerontology. He is a fellow ofthe American Association for the Advancement of Science. Dr. Maddox hasbeen awarded the Sandoz International Prize for Research in Aging. DAVID MECHANIC is director of the Institute for Health, Health Care Policy, and Aging Research at Rutgers University, a University Professor, andthe Ren é Dubos Professor of Behavioral Sciences. He is a member of the Institute of Medicine and serves on the National Committee on Vital and Health Statistics of the Department of Health and Human Services and the Health Advisory Board of the General Accounting Office. He chairs the National Institute of Mental Health's Advisory Group on Research Resources in Mental Health Services Research and recently served as vice chair of the Institute of Medicine's Committee for Pain, Disability, and Chronic Illness Behavior. Dr. Mechanic is a member of the National Institutes of Health's National Advisory Council on Aging, chair of the council's Program Committee, and chair of the Section on Social, Economic and Political Sciences of the American Association for the Advancement of Science. He is also the author of numerousbooks and other publications on health policy and health services research. JOHN L. MELVIN is professor and chairman of the Department of Physical Medicine and Rehabilitation at the Medical College of Wisconsin andmedical director of the Curative Rehabilitation Center of Milwaukee. He ispresident-elect of the Council of Medical Specialty Societies and past presidentof the American Congress of Rehabilitation Medicine, the American Association of Electromyography and Electrodiagnosis, the National Association of Rehabilitation Facilities, and the Association of Academic Physiatrists. He is a founding member of the American Board of Electrodiagnostic Medicine and chairman of the American Board of Physical Medicine and Rehabilitation. He has lectured and consulted extensively withinthe United States COMMITTEE BIOGRAPHIES 346About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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and internationally. In addition, he has published regularly on subjects related to physical medicine and rehabilitation. ARTHUR T. MEYERSON is professor of psychiatry and chairman of the Department of Mental Health Sciences at the Hahnemann University School of Medicine in Philadelphia. Formerly vice chairman and clinical director of the Department of Psychiatry at Mt. Sinai School of Medicine in New York City,he has written extensively in the area of psychiatric disability and chairs the National American Psychiatric Association Committee on Psychiatric Rehabilitation as well as the Task Force on Social Security Income/Social Security Disability Insurance. He has served as chairman of the Mental Health Standing Committee of the President's Committee on Employment of the Handicapped and as an advisor to the last four commissioners of the Rehabilitation Services Administration. Currently, he is conducting studiessupported by the National Institute of Mental Health in the prevention ofdeterioration in a population of severely mentally ill and disabled persons. DOROTHY P. RICE is professor-in-residence in the Department of Social and Behavioral Sciences, School of Nursing, University of California,San Francisco, with joint appointments in the university's Institute for Healthand Aging and Institute for Health Policy Studies. From 1977 to 1982 sheserved as director of the National Center for Health Statistics. Previously shewas deputy assistant commissioner for research and statistics of the Social Security Administration. She is a member of the Institute of Medicine and the Committee on National Statistics, a fellow of the American Statistical Association and the American Public Health Association, and a member of the American Economic Association, the Population Association of America, andthe Gerontological Society of America. She holds a bachelor's degree ineconomics from the University of Wisconsin and was awarded an honorarydoctorate by the College of Medicine and Dentistry of New Jersey. Her majorinterests include health statistics, disability, chronic illness, aging, cost of illnessstudies, and the economics of medical care. JULIUS B. RICHMOND is John D. Mac Arthur Professor of Health Policy (Emeritus) at the Division for Health Policy Research and Education at Harvard University. He received his M. D. and M. S. degrees from the Universityof Illinois at Chicago. At the State University of New York at Syracuse, hechaired the Pediatrics Department and was dean of the Medical School. In 1965he was called to Washington to direct the Head Start Program and later served as director for health affairs, initiating the Neighborhood Health Centers Program for the Office of Economic Opportunity. In 1971 he was appointedprofessor of child psychiatry and human development at Harvard Medical School and became director of the Judge Baker Guidance COMMITTEE BIOGRAPHIES 347About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Center and chief of psychiatry at the Children's Hospital in Boston. From 1977 to 1981 he served as assistant secretary for health, U. S. Department of Healthand Human Services, and surgeon general of the U. S. Public Health Service. Under his leadership, the Public Health Service published Healthy People: The Surgeon General's Report on Health Promotion and Disease Prevention. Dr. Richmond has received the Martha May Eliot Award of the American Public Health Association, the Ronald Mc Donald Children's Charities prize, and the Gustav Lienhard Award of the Institute of Medicine, among others. MAX J. STARKLOFF is the founder and president of Paraquad as well as co-founder and elected president (in 1983, 1984, and 1985) of the National Council of Independent Living. In the past he chaired the Peer Review Panel forthe Title VII Independent Living Grant and Independent Living Programapplications and served as an advisor to the National Council on the Handicapped. In August 1985 Mr. Starkloff was one of fifteen delegates to the First Annual Japan-USA Conference of Persons with Disabilities held in Tokyo and Osaka, Japan. Currently, he serves as a member of the advisory committee to the Rehabilitation Research and Training Center in the Prevention and Treatment of Secondary Complications in Spinal Cord Injury at Northwestern University's Rehabilitation Institute of Chicago. Mr. Starkloff has receivednumerous awards in recognition of his work, including the Commissioner's Distinguished Service Award, from the Commissioner of the Rehabilitation Services Administration, a commendation from the National Council on the Handicapped, and an honorary doctorate of humane letters from the Universityof Missouri-St. Louis. DEBORAH A. STONE holds the David Pokross Chair in Law and Social Policy at the Heller Graduate School of Brandeis University. She received a Ph. D. in political science from Massachusetts Institute of Technology (MIT)and has held faculty appointments in political science and public policy at Duke University, MIT, and Brandeis University. She has been a Guggenheim Fellowand a Fellow in Liberal Arts at Harvard Law School. Her research interests include health insurance in the United States and Europe, disability policy, and preventive medicine. She is the author of numerous articles as well as threebooks: The Limits of Professional Power: National Health Care in the Federal Republic of Germany; The Disabled State ; and Policy Paradox and Political Reason. S. LEONARD SYME is professor of epidemiology at the School of Public Health, University of California, Berkeley. He received his Ph. D. inmedical sociology from Yale University in 1957. His research has focused onthe social, psychological, and cultural factors that increase the risk of suchdiseases as coronary heart disease, stroke, and cancer among particular population COMMITTEE BIOGRAPHIES 348About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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groups (his studies have included Japanese immigrants to the United States, bus drivers in San Francisco, and civil servants in London). He has also beeninvolved in the design and conduct of community projects to prevent thesediseases as well as community studies of smoking cessation, early detection forcancer, and programs to help people reduce disease risk factors. His currentresearch interest is the importance of the early years of life to the development and prevention of disease risk. Dr. Syme's recent publications have dealt with the topics of social support, socioeconomic status, and control of destiny. JOHN E. WARE, JR., is senior scientist at the Institute for the Improvement of Medical Care and Health at the New England Medical Center Hospitals. He is also principal investigator for the Medical Outcomes Study,which assesses variations in physician practice style and outcomes for patientswith chronic conditions treated in different systems of care. Formerly seniorresearch psychologist at the RAND Corporation, he was the principal architectof the surveys of health outcomes and patient satisfaction used in RAND's Health Insurance Experiment. Dr. Ware's current research and consulting activities focus on the development and validation of more practical measuresof functional status, well-being measures of process and outcomes in healthpolicy evaluation, health care management, clinical research, and medicalpractice. COMMITTEE BIOGRAPHIES 349About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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COMMITTEE BIOGRAPHIES 350About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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Index A Abortion, 333, 334-335, 336, 338 see also Family planning, Prenatal services Academic research, 144, 145, 146, 259, 331 Access issues, 10, 27, 68, 94, 280-284, 329 aged persons, 208, 210 assistive technologies, 226, 271 blind, 257 delivery strategies, 4, 27-28, 196, 210-211, 224-225, 272, 282-283 developmental disability and, 130-131, 139, 141, 145 education, children with disabilities, 130-131 historical trends, 54, 56 medical/preventive services, 15, 24-26, 27, 31, 101, 139, 141, 252-258, 268 national agenda, 15, 31, 268 prenatal care, 25, 280-281 public facilities, 33, 87, 88, 94, 233, 330 transportation facilities, 33, 131, 225, 251, 330 vocational services, 27-28, 284 see also Discrimination Activities of daily living, 1, 42, 44, 45-56, 77, 121, 312, 317 aging and, 44-45, 187, 192-193, 194 causes of limitation, 56-61, 75, 104 gender factors, 46, 74 life tables, 61-67, 74 Acute care, 164-168, 176-179, 209 emergency services, 165, 168, 174-176 spinal cord injuries, steroids, 33-34, 177 Administration for Developmental Disabilities, 141 Adolescents, 26, 154, 191 Advisory committees, 18-19, 268, 271 Advocacy and advocates, 29-30, 132, 225, 243, 244, 252, 331 Age factors, 49, 54, 55, 58-59, 245-246 adolescents, 26, 154, 191 assistive technologies, 192 caregivers of aged persons, 209 chronic conditions, general, 191 cost of care, 71, 72 within elderly population, 195 life tables, 61-67, 74 mental adjustment to disability, 221, 222 personal assistance services, 192-193 young adults, 2, 74-75, 153, 154 see also Adolescents; Children;Young adults Agency for Health Care Policy, 234 Aging and aged persons, 13, 54, 190, 209, 210 access issues, 208, 210 activity limitations, 44-45, 187, 192-194 attitudes about, 194-196, 198, 211-212 attitudes of, 206 chronic diseases, 2, 13, 32-33, 56, 59, 60, 100-101, 106, 184-213 cognitive impairments, 194, 210 cost of care, 67-68, 210 drugs, 201, 202, 213 education of elderly, 195 epidemiology, 12, 44-46, 48, 50-53, 56, 59, 67-68, 100-101, 186-193, 195, 199-200, 208, 261 evaluation of services, 196, 198, 213 family caregivers, 209-210, 256 gender differences, 192, 195 health promotion for, 185, 189, 199 injuries, 201, 206INDEX 351About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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life course perspective, 38-39, 193-195 mental health and illness, 206, 207-208 multidisciplinary approach, 195, 209, 261 preventive measures, 32-33, 185, 189, 195-213 professional education on, 201, 212-213 projections, 56, 193, 209-211 psychological factors, 195, 210 public education, 185, 201, 211-212 quality of life, 189, 190, 196, 198, 199, 208, 209, 210-211, 212 risk factors, 86, 185, 193, 198, 200, 202-205 social factors, 195, 199, 206, 210-211 see also Medicare AIDS, see Human immunodeficiency virus Alcohol abuse, 88, 101, 160, 161, 164, 284 driving while intoxicated, 159-161, 330 fetal alcohol syndrome, 11, 114-115, 138 Allied health professionals, 28, 29-30, 231-232, 286, 331 see also Personal assistance services American Academy of Pediatrics, 25, 145, 280 American Foundation for the Blind, 257 American Medical Association, 312, 313 Americans with Disabilities Act, 14, 33, 88, 91, 182, 267, 271, 329 Assistive technologies, 10, 14, 17, 107, 177, 271 access to, 226, 271 age factors, 192 cost factors, 226-227, 237, 283 definitional issues, 226 developmental disabilities, 131, 132 fall prevention, 226, 227, 228 insurance coverage, 14, 27, 227, 228, 233, 257 secondary conditions, prevention, 215, 224-229, 232-234, 237, 239, 240 transportation, 251 Association for the Care of Children's Health, 129 Attitudes, 87 about aged persons, 194, 195, 196, 198, 211-212 of aged persons, 206 about people with disabilities, 30, 70, 230, 233, 245, 264 self-perceptions, 48, 90, 194, 206, 219-220, 236-237 Automobiles, see Motor vehicles B Beneficiary Rehabilitation Program, 249-250 Blindness, 257 Bipartisan Commission on Comprehensive Health Care, 25, 280 Birth defects, 65, 134-135 gestational, 113, 114-116, 125-126, 138 hereditary, 86, 112, 113, 115, 125, 330 Birth Defects Monitoring Program, 134-135Birthweight, 26, 130, 263, 281 Black Americans, 46, 64-65, 114 Brain, 136, 153 cerebral palsy, 117 fetal, 89 fetal alcohol syndrome, 11, 114-115, 138 trauma, 12, 116, 151-153, 155, 156-183 Bureau of Maternal and Child Health and Resources Development, 136-137 C Canada, 184, 275 Census Bureau, 43, 102, 276, 327 see also Survey of Income and Program Par-ticipation Census Disability Survey, 276 Centers for Disease Control, 16-17, 18, 34, 102, 241, 269-270, 271, 332-333 developmental disabilities, 122, 134-136, 146 Disabilities Prevention Program, 16, 34, 260-261, 269, 338 injury programs, 156, 183, 260-261 study sponsorship, 332-333, 336-338 Central nervous system, see Brain; Spinal cord injuries Cerebral palsy, 117, 122 Children, 70, 121, 281 American Academy of Pediatrics, 25, 145, 280 assistance requirements, 192 chronic conditions, general, 191, 284 comprehensive services, 26, 129-131 day care, 129-131 developmental disabilities, acquired, 116, 126-127 educational interventions, 129-131 elementary/secondary education, 121-122, 129-131, 211 epidemiology, 48, 50, 54, 116-117 multidisciplinary approaches, 129, 284 insurance, 25, 280 special education, 121-122, 248, 330 state programs, 284 well-child care, 124, 128 see also Adolescents; Birth defects; Birthweight;Developmental disabilities Chronic diseases, 6, 12-13, 65, 74, 253 adolescents, 191 aging process and elderly, 2, 13, 32-33, 56, 59, 60, 100-101, 106, 184-213 children, 191, 284 epidemiology, 12, 44-46, 48, 50-53, 56, 59, 67-68, 100-101, 186-193, 195, 199-200, 208, 261 multiple, 60, 191-192INDEX 352About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

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prevention measures, persons with, 39, 106, 196-199 protocols, 208, 213 public education, 185, 201, 211-212 quality of life, 189, 190, 196, 198, 199, 208, 209, 210-211, 212 see also Developmental disabilities Classification, 255, 273-274, 321-327 injuries, 157-158, 159 severity of disability, 179 WHO international system, 5-6, 20-21, 76-78, 97, 158, 273, 319-320, 325, 327 see also Definitional issues; Models Cognitive impairments, 178-179 aged persons, 194, 210 learning disorders, 117, 330 mental retardation, 112, 114-115, 118, 119, 133 Commission on Chronic Illness, 311-312 Committee on Employment of People with Dis-abilities, 78 Communication limitations, 118, 119, 121, 178, 179, 223, 226, 229 Community-based programs access issues, 27 aged persons, 210 databases, 137-138 demonstration projects, 283-284 developmental disabilities, 130, 143 educational programs, 130 federal coordination, 16, 34, 262, 263 injury rehabilitation, 181, 183 independent living centers, 30, 94, 180, 225, 232 local activities and governments, 262, 282, 283 mental health services, 208 private sector cooperation, 263-264 secondary condition prevention, 238 state regulation of, 263 Comprehensive approaches, 4-14, 242-266 age-related disabilities, 199, 211 injuries, 164-183 prenatal and child care, 26, 129-131 research, 22-23 secondary conditions, prevention, 223-233 vocational, 28, 248, 249-251, 263, 284 see also Multidisciplinary approach Computers and computer science case management, 212-213, 225 injury surveillance, 157-158 Conceptual issues, see Definitional issues; Models Coordination, see Organization and coordination Cost and cost analysis, 281 affordable care, 14, 25-26, 182, 253, 280-283 age factors, 71, 72 aged persons, care, 67-68, 210 assistive technologies, 226-227, 237, 283child care, 70, 139 developmental disabilities, 11, 110 disability-related, general, 1, 24, 67-73, 75, 242, 248, 310, 337 gender factors, 68 health care, general, 25-26, 252, 256 historical perspective, 67-73 injury-related, 11, 12, 147, 148-150, 153, 160, 163, 164, 174, 183 insurance, 27 long-term care, 282 medical services, 69-73, 139 prenatal care, 26, 280-281 secondary conditions, 220 transfer payments, 69, 70, 310 vocational rehabilitation, 250 Cost of Injury in the United States, 163, 183 D Day care, 129-131 Definitional issues, 76-83, 97, 268, 273-274 assistive technologies, 226 brain injury, 159 disability, 1, 35-37, 78, 81-83, 118, 121-122, 230, 235, 273-274, 309-327 developmental disability, 109, 118 disabling process, 91-92 evaluation, 35 functional limitation, 5, 7, 35-36, 74, 76, 77, 79, 80, 118, 119-121, 312, 313, 314-315, 321, 325 handicap, 6, 77-78, 118, 320, 324, 325 impairment, 7, 35-36, 79, 80, 118, 121, 312, 314, 319-320, 321 international classification system, 5-6, 76-78 pathology, 7, 35-36, 79-80, 313-314, 319 prevention, 35, 36-37, 97 quality of life, 89-90 rehabilitation, 214 risk factors, 37-38, 84-89, 99 secondary condition, 13, 35, 214, 235 social limitations, 6, 42, 74, 77 Demography, 70, 98, 100, 193 educational attainment, 92-94, 195, 222 projections, 56, 193, 209-210 urban/rural, 11, 12, 131, 153, 233 see also Epidemiology; Gender factors;Racial/ethnic factors ;Socioeconomic status Demonstration projects, 262-263, 283-284 preventive, elderly, 199, 211 Dental health, 203, 206 Department of Education, 137, 248, 250, 263 Department of Health and Human Services, see specific constituent agencies INDEX 353About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

Department of Labor, 102 Department of Veterans Affairs, 259-260 Dependence/independence, 4, 33, 90-91, 107, 249, 265, 266 advocacy and, 243, 244 aged persons, 206 case study, 219-220 gender differences, 67 independent living centers, 30, 94, 180, 225, 232 institutionalized persons, 47, 206, 210 see also Activities of daily living; Assistive technologies;Functional limitations; Mobility limitations Depression, 33, 40, 205, 206, 215, 219, 221, 222, 238, 240 Developmental disabilities, 10-11, 109-146 access issues, 130-131, 139, 141, 145 acquired, 116, 126-127 assistive technologies, 131, 132 CDC, 122, 134-136, 146 coordination of services, 34, 132-133, 139, 141, 143, 144-145 costs of, 11, 110 definitional issues, 109, 118 epidemiology, 11, 21, 109-122, 131, 134-139 federal programs, general, 141, 142, 145 functional limitations, 118, 119-121 historical perspective, 122-123 local community activities, 130, 143 mental retardation, 112, 114-115, 118, 119, 133 models, 118-122 multidisciplinary approach, 129 poverty and, 141-142, 145 preventive measures, 11, 34, 118, 122-146 private sector, 143-144 professional education on, 132, 146 research, 138-139 risk factors, 122, 123, 125-127 screening, 122-123, 128-129 secondary conditions, 122, 123 state government action, 34, 131, 133, 137-138, 141, 143, 144-145 toxicology of, 11, 114-115, 124, 131, 134 Developmental Disabilities Act, 109 Diabetes, 196, 197 Disabilities Prevention Program (CDC), 16, 34, 260-261, 269, 338 Disability conceptualization, 320-327 Disabling process, 91-92 Discrimination, 33, 87, 182, 223, 263-264, 329 Down syndrome, 115 Drug abuse, 88-89, 164, 207, 284 see also Alcohol abuse Drug labeling, 201 Drugs, prescribed, 86 aged persons, 201, 202, 213 secondary conditions, 228, 229, 236 spinal cord injuries, 33-34, 177E Economic factors, see Cost and cost analysis; Employment and unemployment; Income maintenance;Productivity, losses; Socioeconomic status Educational attainment, 92, 93-94, 195, 222 Education and training childhood, 121-122, 129-131, 211 families of people with disabilities, 29-30, 87 family planning, 26-27, 128-129, 338 learning disorders, general, 117, 330 mental retardation, 112, 114-115, 118, 119, 133 of people with disabilities, 117, 177-178, 213-233, 248, 287 preventive, 105, 129-131 special, for children with disabilities, 121-122, 248, 330 see also Professional education; Public education; Vocational rehabilitation Education for All Handicapped Children Act, 330 Elderly, see Aging and aged persons; Medicare Emergency medical services, 165, 168, 174-176 Employee Retirement and Income Security Act, 254 Employment and unemployment, 17, 78, 87, 94, 102, 251 brain damage and, 152-153 discrimination, 33, 87, 182, 223, 263-264, 329 insurance provide by employer, 24, 253, 254 occupational risk factors, 84, 157, 330 quality of life and, 33, 172-173 productivity losses, 68, 69, 148, 163 spinal cord injuries, 154, 220 SSDI, 52, 248, 249-252, 257, 310, 313 vocational services, 27-28, 93-94, 165, 172, 179-183, 244, 248, 249-251, 263, 284, 311 women, 64 work limitations, 43, 50, 51, 54, 56, 64, 74, 154, 220, 221-223, 233, 253-254, 257-258, 316 Environmental factors, 86-88, 224, 233, 237 preventive measures, 105, 131-132, 233 public facilities, access, 33, 88, 87, 94, 233, 330 secondary conditions, 224, 233, 235, 237 toxic agents, 98, 131INDEX 354About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

transportation facilities, access to, 33, 131, 225, 251, 330 urban/rural, 11, 12, 131, 153, 233 weather, 94, 233 see also Assistive technologies; Safety equipment;Social factors Epidemiology, 1, 4, 32, 34, 41-75, 95-104, 337 children, 48, 50, 54, 116-117 chronic diseases and aging, 12, 44-46, 48, 50-53, 56, 59, 67-68, 100-101, 186-193, 195, 199-200, 208, 261 data sources, 34, 41-45, 97-104, 134-138, 274-276 developmental disabilities, 11, 21, 109-122, 131, 134-139 disability indexes, general, 103-104, 179, 276-277, 315 functional limitations, 21, 40, 42-44, 45, 49-50, 51 injuries, 12, 22, 32, 39, 147-159, 176, 179 life expectancy, 1, 56, 61, 64-65, 67, 184, 185, 208 life tables, 61-67, 74 longitudinal, 22-23, 99, 102, 193-194, 200, 261, 277-279 national program, 15, 20, 21-22, 31, 268, 243, 245-246, 268, 274-277 prevalence data, general, 1, 4, 32, 41, 45-56, 101-102, 309 secondary conditions, 22, 137, 218, 220, 240 see also Risk factors Ethical issues, 252 Europe, 251-252 Evaluation, 39, 68, 159, 337 advocacy, 331 age-related disease prevention, 196, 198, 213 community-based, 283-284 definitional issues, 35 disability conceptualization, 320-327 government assistance programs, 68, 182 injury prevention, 160 injury rehabilitation, 181, 182-183 national program, 273, 283 preventive measures, general, 247, 278-279, 284 public assistance programs, 68, 102 rehabilitation programs, 245, 279 secondary conditions, prevention, 223, 234-335 Exercise as primary prevention, 86, 200, 205, 229-230, 248 for people with disabilities, 177-178, 229-230, 235 F Fall injuries, 149, 150, 155, 157, 160, 164, 201, 206 assistive/safety devices, 226, 227, 228Families/informal caregivers, 222, 223, 232, 256, 271 aged people with disabilities, 209-210, 256 developmental disabilities, poverty, 141, 145 education of, 29-30, 287 Family planning, 26-27, 128-129, 281-282, 338 abortion, 333, 334-335, 336, 338 Federal government, 14-31, 248-258 age-related disabilities, 185 developmental disabilities, 141, 142, 145 disability-related expenditures, general, 24 home care programs, 255-256 injury prevention, 260-261 interagency coordination, 19-20, 24, 102, 133, 241, 243, 258-259, 263, 267, 271-274 local coordination by, 16, 34, 262, 263 national objectives, 15, 31, 245-247, 249, 268 rehabilitation research, 259-260 state cooperation with, 16, 34, 131, 133, 141, 145, 248, 250, 261, 262, 311 see also Laws, specific federal; National Disability Prevention Program;specific departments, agencies, and programs Fetal alcohol syndrome, 11, 114-115, 138 Firearms, 150, 154, 157, 330, 338 Follow-up, 179-183, 225 Foreign countries, 65, 76, 184, 251-252, 275, 279, 310 Fragile X syndrome, 112 Framingham Study, 102 Functional electrical stimulation (FES), 177, 179 Functional Limitations, 32, 90, 196 defined, 5, 7, 35-36, 74, 76, 77, 79, 80, 118-121, 312, 313, 314-315, 321, 325 developmental disabilities, 118, 119-121 epidemiology, 21, 40, 42-44, 45, 49-51 injury-related, 171-172 spinal cord injuries, drugs, 33-34, 177 see also Activities of daily living G Gender factors, 54, 62-63, 64, 67, 256 activity limitations, 46, 74 aged persons, 192, 195 disability costs, 68 injuries, 12, 153 Genetics, 86, 112, 113, 115, 125, 330 preventive interventions, 123-124, 128-129, 330INDEX 355About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

screening, 330, 333, 334 Glasgow Coma Scale, 151-152 Government role developmental disabilities, 11, 110 private sector coordination, 17-18, 261-264, 270-271, 331 see also Community-based programs; Federal government;Public assistance; State governments Guide to Clinical Preventive Services, 247-248 H Handicap, 6, 77-78, 118, 320, 324, 325 Head injuries, see Brain Head Start programs, 129-130, 145, 284 Health Care Financing Administration, 44, 102, 138, 145, 199, 263 Health care professionals allied, 28, 29-30, 231-232, 286, 331 associations, 25, 145, 280, 312 attitudes of, 245 physicians, 27, 29, 222, 231, 232, 245, 285-286, 331 see also Personal assistance services; Professional education Health promotion, 38-39, 105, 245-247, 283 aged persons, 185, 189, 199 models, 38-39, 227, 283 secondary conditions and, 215, 224, 227-230 Health services delivery, 4, 27-28, 196, 210-211, 224-225, 272, 282-283 secondary conditions, 224-225 Healthy People 2000, 185, 246-247 Hearing, see Communication limitations Hispanics, 136 Historical perspectives, 2 access issues, 54, 56 conceptualization of disability, 311-327 costs of disability, 67-73 developmental disabilities, 122-123 employer-provided insurance, 254 injuries, 32, 155-156 prevalence of disabilities, 53-56 Home care, 210, 233, 255-256 see also Families/informal caregivers; Personal assistance services Homelessness, 207, 262 Housing, 220, 225 Human immunodeficiency virus, 88, 96, 107 perinatally acquired, 115-116 I Impairment defined, 7, 35-36, 79, 80, 118, 121, 314, 319-320, 321 injury-related, 171-172 see also Multiple impairments; specific impairments Income maintenance, 310 Social Security Disability Insurance, 52, 248, 249-252, 310, 313 Supplemental Security Income, 52, 141, 248, 310 Independence, see Dependence/independence Independent living centers, 30, 94, 180, 225, 232 Indexes of disabilities, general, 103-104, 179, 276-277, 315 Informal caregivers, see Families/informal caregivers Injury, 11-12, 147-183 aged persons, 201, 206 brain damage, 12, 116, 168-183 CDC, 156, 183, 260-261 classification, 157-158, 159 computer surveillance, 157-158 coordination of services, 157-158, 164, 183 cost of, 11, 12, 147, 148-150, 153, 160, 163, 164, 174, 183 education on, 164, 182 epidemiology, 12, 22, 32, 39, 147-159, 176, 179 evaluation of interventions, 159, 160, 181, 182-183 firearms, 150, 154, 157, 330, 338 functional limitations/impairments, 171-172 gender factors, 12, 153 historical perspectives, 32, 155-156 local efforts, 181, 183 medical services, 147, 155, 165, 168, 174-176 mobility limitations, 176-177, 178, 179 multidisciplinary approach, 182 prevention, 37-38, 39, 159-164, 183, 201, 226, 227, 228, 260-261, 330 productivity losses, 148, 163 psychological factors, 151, 152, 165, 173, 179-183 quality of life, 172-173, 182 risk factors, 84, 157, 330 secondary conditions, 164, 168, 174-176 social factors, 151, 152, 163, 173-174, 179-183 traumatic brain injury,see Brain urban areas, 12, 153 young adults, 74-75, 153 work-related, 84, 157, 330 see also Brain; Fall injuries;Motor vehicles;Spinal cord injuries Injury Control and Disabilities Prevention Pro-grams, 260 Institute of Medicine, 26, 39, 200, 281, 332, 333, 335 Institutionalized persons, 47, 206, 210INDEX 356About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

Instrumental activities of daily living, see Activities of daily living Insurance, 17, 24-25, 211, 252-257, 271, 280, 282 assistive devices, 14, 27, 227, 228, 233, 257 eligibility criteria, 14, 26-27, 139, 182, 227, 228, 233, 254-257, 280, 313 employer-provided, 24, 253, 254 family planning/prenatal services, 25, 26-27, 139, 280 injuries, rehabilitation, 182 Medicaid, 24, 248, 255, 257 Medicare, 24, 44, 199, 209, 229, 255-257 Injury in America, 39, 163, 183 Injury Prevention, 183 Interagency Committee on Disability Research, 258, 259 Interagency Council on Disability Prevention, 19, 272 Interagency Forum on Aging-Related Statistics, 53 International Center for the Disabled, 43, 48, 244, 250 International perspectives, 65, 76, 184, 251-252, 275, 279, 310 see also World Health Organization International Classification of Impairments, Disabilities, and Handicaps, 5-6, 20-21, 76-78, 97, 158, 273, 319-320, 325, 327 L Laws, specific federal, 242, 243 Americans with Disabilities Act, 14, 33, 88, 91, 182, 267, 271, 329 Developmental Disabilities Act, 109 Education for All Handicapped Children Act, 330 Employee Retirement and Income Security Act, 254 Medicare Catastrophic Coverage Act, 256 Occupational Health and Safety Act, 330 Rehabilitation Act, 313 Social Security Act, 249 Vocational Rehabilitation Act, 311 Lead toxicity, 11, 116-117, 131 Learning disabilities, 117, 330 mental retardation, 112, 114-115, 118, 119, 133 special education, 121-122, 248, 330 Legal issues discrimination, 33, 87, 182, 223, 263-264, 329 driving while intoxicated, 161 injury reporting, mandatory, 159 see also Laws, specific federal Life course perspective, 38-39, 193-195, 235 aged persons, 185 Life expectancy, 1, 56, 61, 64-65, 67, 184, 185, 208 Lifestyle risk factors, 88-89, 228, 248 Life tables, 61-67, 74 Local activities and governments, 262, 282, 283see also Community-based programs Longitudinal studies, 22-23, 99, 102, 275-276, 277-279 aging and chronic diseases, 193-194, 200, 261 Longitudinal Study of Aging, 44-45, 67 Long-term care, 4, 194, 243, 244, 265, 282, 285 insurance, 27, 255-257 national survey, 44, 53, 194, 200, 209 nursing homes, 46, 149, 206, 210, 219, 256 Louis Harris and Associates, 43 International Center for the Disabled, 43, 48, 244, 250 M Maternal and Child Health Bureau, 129 Maternity Outreach Services, 262-263 Medicaid, 24, 248, 255, 257 Medical services, 4, 14 access issues, 15, 24-26, 27, 31, 101, 139, 141, 252-258, 268 acute care, 164-168, 176-179, 209 costs, 69-73, 139 emergency services, 165, 168, 174-176 injury-related, 147, 155, 165, 168, 174-176 model of disability, traditional, 27, 36-37, 104, 244-245, 339 secondary conditions, 224-225 see also Health care professionals Medicare, 24, 44, 199, 209, 229, 255, 256, 257 Medicare Catastrophic Coverage Act, 256 Mental health and illness, 207, 208 adjustment to disability, age factors, 206, 207-208, 221, 222 aged persons, 206, 207-208 chronic, 5, 40, 207-208 coordination of services, 263 depression, 33, 40, 205, 206, 215, 219, 221, 222, 238, 240 secondary conditions, 5, 33, 216, 219, 221-223 work limitations, 51, 251-253 see also Alcohol abuse; Cognitive impairments; Drug abuse;Psychological factors Mental retardation, 112, 114-115, 118, 119, 133 special education, 121-122, 248, 330INDEX 357About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

Metropolitan Atlanta Congenital Defects Pro-gram, 134 Metropolitan Atlanta Developmental Disabili-ties Study, 135 Minority groups, 1, 12, 45, 46, 64-65, 114, 136, 153 Mobility limitations, 2, 65 developmental disabilities, 118, 119 injury-related, 176-177, 178, 179 public facilities, 33, 87, 88, 94, 233, 330 transportation facilities, 33, 131, 225, 251, 330 weather-related, 94, 233 young persons, 74-75 see also Paralysis Models, 97 acute care and rehabilitation, 164-183 demonstration projects, 199, 211, 262-263, 283-284 developmental disability, 118-122 disability, general, 4, 5-10, 76, 83-108, 193-195, 196, 309-327 health promotion, 38-39, 227, 283 injuries, response, 164-183 medical, traditional, 27, 36-37, 104, 211, 244-245, 339 protocols, 13, 208, 213, 234-241, 259 secondary conditions, 215-223 spinal cord injuries, 154 Motor vehicles, 38-39, 149-150, 153, 157, 161-162 driving while intoxicated, 159-161, 330 safety equipment, 38, 157, 161-163, 339 spinal cord injuries, 11, 154, 155 Multidisciplinary approach, 259, 265, 266, 285, 321 aged persons and aging, 195, 209, 261 child-focused programs, 129, 284 developmental disabilities, 129 injury-related disabilities, 182 secondary conditions, 234 Multiple impairments, 94-95, 121, 218 drugs, multiple, 201 chronic, 60, 191-192 injury-related, 174 risk factors, 234 see also Secondary conditions N Nagi, Saad, 4, 7, 76, 77, 81-82, 83, 95, 309-327 National Accident Sampling System, 156 National Center for Health Services Research, 136, 138 National Center for Health Statistics, 102, 135-136, 156-157 National Center for Medical Rehabilitation Research, 261 National Coalition for the Prevention of Mental Retardation, 133 National Committee for Injury Prevention and Control, 160National Council on Disability, 16, 34, 43, 78, 133, 243, 269, 331 National Council on the Handicapped, see National Council on Disability National Crime Survey, 156 National Disability Prevention Program, 4-31 (passim), 34, 267-287, 332, 337 aged persons, 190-191 agenda, 15, 31, 268 education, 15, 31, 268 epidemiology, 15, 20, 21-22, 31, 268, 243, 245-246, 268, 274-277 evaluation, 273, 283 objectives, 15, 31, 245-247, 249, 268 preventive measures, 4-14, 17, 18, 32-33, 245-247, 267-273, 284 research, 15, 31, 268, 272, 277 National Electronic Injury Surveillance System, 156 National Handicapped Sports and Recreation Association, 229-230 National Health and Nutrition Examination Surveys, 136 National Health Interview Survey, 42-43, 44, 45-48, 50-51, 53, 60, 61, 64, 66, 73, 74, 75, 95, 102, 276 aging and chronic diseases, 186, 189, 191-192 developmental disabilities, 118, 135 injuries, 156-158 secondary conditions, 218 Supplement on Aging, 44-45, 60, 67, 192 National Hospital Discharge Survey, 156-158 National Institute of Child Health and Human Development, 261 National Institute on Aging, 102, 261 National Institute on Disability and Rehabilita-tion Research, 78, 102, 137, 146, 166, 241, 258-259 National Institute of Mental Health, 263 National Institutes of Health, 136, 146, 259 National Long-Term Care Survey, 44, 53, 194, 200, 209 National Maternal and Infant Health Survey, 136 National Medical Care Expenditures Survey, 136 National Medical Care Utilization and Expendi-ture Survey (1980), 110, 135-136 National Research Council, 39, 103, 220 National Spinal Cord Injury Data Base, 155 Native Americans, 114INDEX 358About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

New Jersey, 262-263 Nursing homes, 46, 149, 206, 210, 219, 256 Nutrition, 86, 136, 138, 200, 201, 204, 229, 235, 248 O Occupational Health and Safety Act, 330 Occupational disabilities risk factors, 84, 157, 330 work limitations, 43, 50, 51, 54, 56, 64, 74, 154, 220, 221-223, 233, 253-254, 257-258, 316 Office of Disease Prevention and Health Promo-tion, 133 Office of Human Development Services, 145 Organization and coordination, 14-19, 31, 258-266, 267-273 acute care, 165 advisory committees, 18-19, 268, 271 aging and chronic disease, 195, 208-211 developmental disabilities, 34, 132-133, 139, 141, 143, 144-145 injury-related disabilities, 157-158, 164, 183 interagency, 19-20, 102, 133, 241, 243, 258-259, 263, 267, 268, 271-274 local, 282 local-federal, 16, 34, 262, 263 national agenda, 15, 31, 268 private sector, 17-18, 261-264, 270-271, 331 research, 19, 22-23, 277 secondary conditions, 224-225, 241 state-federal, 16, 34, 131, 133, 141, 145, 248, 250, 261, 262, 311 see also Comprehensive approaches; Multidisciplinary approach P Paralysis, 2, 95, 154, 176-177 paraplegia/quadraplegia, 35, 154, 155, 177, 215, 219-220 Pathology, 7, 35-36, 79-80, 234, 313-314, 319 Personal assistance services, 271 age factors, 192-193 attendants, education, 29-30, 232, 287 federal insurance for, 254-255 see also Assistive technologies; Families/informal caregivers Physicians, 222 access to, 27 education, 29, 231, 232, 285-286, 331 Peer influence, 132, 173, 225 Political factors, 163, 328 advocacy and advocates, 29-30, 132, 225, 243, 244, 252, 331 see also Public opinion Poverty, 1, 24-25, 47, 48, 92, 253, 280 developmental disabilities, 141-142, 145 Head Start programs, 129-130, 145, 284 homelessness, 207, 262Medicaid, 24, 248, 255, 257 prenatal care, 26, 262-263, 281-282 see also Public assistance Pregnancy termination, see Abortion; Family planning; Prenatal services Prenatal services, 26-27, 37, 101, 124, 128-129, 281-282, 333, 337-338 abortion, 333, 334-335, 336, 338 access to, 25, 280-281 comprehensive, 26, 262-263 cost factors, 26, 280-281 drug abuse, 88-89 family planning, 26-27, 128-129, 281-282, 338 fetal alcohol syndrome, 11, 114-115, 138 insurance coverage, 25, 26-27, 139, 280 poor women, 26, 262-263, 281-282 state program, 262-263 Preventing Low Birthweight, 26, 281 Preventive measures, 1, 40, 104-108, 242-266, 330-331, 337 access to, 24-26, 139, 141, 252-258, 268 age-related chronic disabilities, 32-33, 185, 189, 195-213 chronic disabilities, persons with, 39, 106, 196-199 comprehensive, 4-14 definitional issues, 35, 36-37, 97 developmental disabilities, 11, 34, 118, 122-146 educational, 129-131, 286-287 environmental factors, 105, 131-132, 233 evaluation, general, 247, 278-279, 284 genetic, general, 123-124, 128-129, 330 injury, 37-38, 39, 159-164, 183, 226, 227, 228, 260-261, 330 insurance coverage, 25, 26-27, 139, 211, 227, 228, 233 life course perspective, 38-39, 193-195 model of, 102-103, 104-108 national, 4-14, 17, 18, 32-33, 245-247, 267-273, 284 private sector, 40 research, 24, 278-279 secondary conditions, 3, 7, 14, 27, 164, 214, 215, 223-241 social factors, 4, 23-24, 237-238 standards, 103 see also Health promotion; Prenatal services;Risk factors;Safety equipment; Screening; Well-child care Private sector, 331 advocacy, 29-30, 132, 225, 243, 244, 252, 331 developmental disabilities, 143-144 employment programs, 251INDEX 359About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

government coordination of, 17-18, 261-264, 270-271, 331 insurance, 14, 17, 24-25, 26-27, 139, 182, 211, 227, 228, 233, 253, 252-257, 271, 280, 282 local cooperation, 263-264 preventive measures, 40 Productivity, losses, 68, 69, 148, 163 Professional associations, 25, 145, 280, 312 Professional education, 28-29, 31, 146, 264-265, 268, 284-286 on aged persons, 201, 212-213 developmental disabilities, 132, 146 national agenda, 15, 31, 268 researchers, 279, 331 secondary conditions, 231, 232, 239-240 see also Vocational rehabilitation Projections, aging population, 56, 193, 209-211 Prosthetics, see Assistive technologies Protocols, 13, 208, 213, 234-241, 259 Psychological factors, 23-24, 92-93, 94, 98-99, 278 aged persons, 195, 210 injuries, 151, 152, 165, 173, 179-183 rehabilitation, related to, 206, 207-208, 221, 222, 236-237 see also Mental health and illness Public assistance, 248, 253, 282 developmental disabilities, 141 eligibility criteria, 56, 249-250, 256, 257, 263, 313 evaluation, 68, 182 housing, 220, 225 Medicaid, 24, 248, 255, 257 Medicare, 24, 44, 199, 209, 229, 255, 256, 257 people with mental disabilities, 208 Social Security Disability Insurance, 52, 248, 249-252, 310, 313 Supplemental Security Income, 52, 141, 248, 310 see also Medicaid; Medicare Public education, 15, 17, 28, 31, 230, 264, 268, 283, 286-287 aging process, 185, 211-212 chronic diseases and aging, 185, 201, 211-212 family planning, 26-27, 128-129, 281-282 injury-related disabilities, 164, 182 national agenda, 15, 31, 268 secondary conditions, 224, 230-233 Public facilities, access to, 33, 87, 88, 94, 233, 330 transportation, 33, 131, 225, 233, 330 Public Health Service, 245-246 Public opinion, 4, 94 about aging, 194, 195, 196, 198, 211-212 about people with disabilities, 30, 70, 230, 233, 264Q Quality of life, 1, 2-3, 4, 8, 20, 32, 34, 74, 105, 245, 265-266 aging and chronic diseases, 189, 190, 196, 198, 199, 208, 209, 210-211, 212 central nervous system injury, 172-173, 182 disability model, factor in, 85, 89-91 employment and, 33, 172-173 handicap, defined, 78 secondary condition prevention, 235 standard of living, 84, 90 WHO, 89-90 see also Activities of daily living; Dependence/independence R Racial/ethnic factors, 1, 12, 45, 46, 64-65, 114, 136, 153 blacks, 46, 64-65, 114 Hispanics, 136 Native Americans, 114 Regulations alcohol and drug abuse, 161, 164 environmental toxins, 131 labeling, 201 see also Standards Rehabilitation, 3, 107, 214 concept of, 311 evaluation of, 245, 279 geriatric, 194-195 independent living centers, 30, 94, 180, 225, 232 injuries, systems approach, 164-183 models, 164-183 professional education on, 231 psychological factors, 206, 207-208, 221, 222, 236-237 research, 24, 258-260, 278-279 secondary conditions, prevention, 214, 215, 236-237 Social Security Disability Insurance, 52, 248, 249-252, 310, 313 vocational, 27-28, 165, 179-183, 244, 248, 249-251, 263, 284, 311 Rehabilitation Act, 313 Rehabilitation Services Administration, 263 Research, 22-24, 75, 100, 268, 277-279 aging and disease, 189, 193-194, 208 brain, 136 coordination, 19, 22-23, 277 developmental disabilities, 138-139 injuries, 163, 164, 176, 179 national program, 15, 31, 268, 272, 277 preventive measures, 24, 278-279 rehabilitation, 24, 258-260, 279 risk factors, 4, 33, 86, 98-99, 164, 277-278INDEX 360About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

secondary conditions, 234, 240-241 social factors, 278 socioeconomic status, 23-24, 278 training for, 279, 331 university-based, 144, 145, 146, 259, 331 see also Demonstration projects; Epidemiology;Evaluation Retirement History Survey, 102 Risk factors, 4, 8, 12-13, 20, 80, 84-89, 91-92, 94, 96, 101, 228, 248 aged persons, 86, 185, 193, 198, 200, 202-205 assistive technologies and, 226 brain injury, 153 definitions, 37-38, 84-89, 99 developmental disabilities, 122, 123, 125-127 epidemiological research, general, 4, 22, 33, 98-99 injuries, 163, 164, 165 insurance classifications, 255 multiple impairments, 234 occupational, 84, 157, 330 research, 4, 33, 86, 98-99, 164, 277-278 secondary conditions, general, 214, 215, 226, 234, 235 sexual activities, 88, 96, 107, 248 see also Screening; specific factors Robert Wood Johnson Foundation, 263 Rural areas, 131 S Safety equipment, 163-164, 330 fall injuries, prevention, 226, 227, 228 motor vehicles, 38, 157, 161-163, 339 Schizophrenia, 207 Screening, 106, 107, 247-248, 257 developmental disabilities, general, 122-123, 128-129 employer-provided insurance, 254 federal support, 145 genetic, 330, 333, 334 Secondary conditions, 13-14, 94-95, 214-241 assistive technologies and, 215, 224, 225-229, 232, 233, 234, 237, 239, 240 CDC, 241 coordination of services, 224-225, 241 cost, 220 defined, 13, 35, 214, 235 depression, 33, 40, 205, 206, 215, 219, 221, 222, 238, 240 developmental disabilities and, 122, 123 drug treatment, 228, 229, 236 environmental factors, 224, 233, 235, 237 epidemiology, 22, 137, 218, 220, 240 evaluation of interventions, 223, 234-335 health promotion interventions, 215, 224, 227-230 injury-related, 164, 168, 174-176 learning disabilities, 330local intervention, 238 medical interventions, general, 224-225 mental/emotional, general, 5, 33, 216, 219, 221-223 multidisciplinary approach, 234 prevention, 3, 7, 27, 33, 34, 107, 164, 207, 223-241 professional education on, 231, 232, 239-240 protocols, 13, 234-241 public education, 224, 230-233 rehabilitation and, 214, 215, 236-237 research, 234, 240-241 risk factors, 214, 215, 226, 234, 235 social factors, 223, 235, 237-238 Sensory limitations, 118, 119, 121, 178, 179, 203, 216, 228 Sex differences, see Gender factors Sexual activity family planning, 26-27, 128-129, 281-282 of people with disabilities, 222 as risk factor, 88, 96, 107, 248 Smoking, 88, 101, 200, 205, 248 Social factors, 75, 86-87, 98-99 aged persons, 195, 199, 206, 210-211 disability definitional issues, 6, 42, 74, 77, 315-317, 320, 321, 324, 325 injuries, 151, 152, 163, 173-174, 179-183 international comparisons, 252 limitations, defined, 6, 42, 74, 77 peer influence, 132, 173, 225 preventive interventions, 4, 23-24, 237-238 research, 278 and secondary conditions, 223, 235, 237-238 support networks, 4, 99, 132, 206, 223, 224-225, 237-238 see also Demography; Public opinion Social Security Act, 249 Social Security Administration, 102, 138, 249 Social Security Disability Insurance, 52, 248, 249-252, 257, 310, 313 Socioeconomic status, 47, 101 brain injury epidemiology, 153 in disabling process, 23-24, 84, 92, 93, 94 prenatal care, 281-282 research on, 23-24, 278 see also Poverty Speech, see Communication limitations Special education, 121-122, 248, 330 Spinal cord injuries, 12, 150-151, 153-183, 215 adolescents and young adults, 154 employment issues, 154, 220 motor vehicles, 11, 154, 155INDEX 361About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf

paraplegia/quadraplegia, 35, 154, 155, 177, 215, 219-220 protocols, 236, 259 steroids, 33-34, 177 Sports and athletics, 154, 229-230 Standards accreditation, professional education, 231 chronic disease, protocols, 208, 213 disability indexes, general, 103-104, 179, 276-277, 315 disability measures, 20-21, 179, 273-274 insurance eligibility, 14, 26-27, 139, 182, 227, 228, 233, 254-257, 280, 313 national objectives, 15, 31, 245-247, 260, 268 prevention criteria, general, 103 public assistance, eligibility, 56, 249-250, 256, 257, 263, 313 secondary conditions, protocols, 13, 234-241 spinal cord injuries, protocols, 13, 234-241 spinal cord injuries, protocols, 236, 259 see also Classification; Definitional issues; Quality of life Standards of living, 84, 90 State governments, 262 aged persons, data, 190 blind, services, 257 child-focused programs, 284 databases, 137-138, 190-191 developmental disabilities, 34, 131, 133, 137-138, 141, 143, 144-145 federal cooperation with, 16, 34, 131, 133, 141, 145, 248, 250, 261, 262, 311 home care programs, 255-256 injuries, mandatory reporting, 159 local activities, regulation, 263 prenatal care, 262-263 rehabilitation programs, 311 vocational rehabilitation, 248, 250 Statistical programs and activities, see Cost and cost analysis; Epidemiol-ogy Steroids, 33-34, 177 Substance abuse, see Drug abuse Supplemental Security Income, 52, 141, 248, 310 Supplement on Aging (NHIS), 44-45, 60, 67, 192 Surgeon General, 184-185, 333 Surveillance, see Epidemiology Survey of Income and Program Participation, 43-44, 49-53, 74, 75, 102, 253 Survey of Occupational Injuries and Illnesses, 156 T Technical assistance, 34 Technology, see Assistive technologies;Safety equipment Therapy, see Rehabilitation Toward Independence, 243, 260 Toxicity environmental, general, 98, 131 developmental disabilities, 11, 114-115, 124, 131, 134 lead, 11, 116-117, 131 Training, see Education and training Transfer payments, 69, 70, 310 Transportation facilities access to, 33, 131, 225, 233, 330 assistive devices, 251 Traumatic Brain Injury, 180 Traumatic brain injury, see Brain; Injury Traumatic injury, see Injury U Uniform Hospital Discharge Set, 157 University programs, 144-146, 259, 331 Urban areas, 233 brain injuries, 12, 153 lead poisoning, 11 Utilization of services, 27, 68 V Veterans, 52, 259-260, 310 Vocational rehabilitation, 27-28, 93-94, 165, 172, 179-183, 244, 248, 249-251, 263, 284, 311 Vocational Rehabilitation Act, 311 W Weather, 94, 233 Well-child care, 124, 128 Women, 64, 256 see also Gender factors; Prenatal services Work issues, see Employment and unemployment World Health Organization, 4, 7, 76, 83 ICIDH classification system, 5-6, 20-21, 76-78, 97, 273, 319-320, 325, 327 quality of life, 89-90 World Institute on Disability, 256 Y Young adults, 2 injuries, 74-75, 153 spinal cord injuries, 154 see also Adolescents INDEX 362About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved.

Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf