Index

A

AAA Foundation for Traffic Safety, 542

AAMC. See Association of American Medical Colleges

AAP. See American Academy of Pediatrics

AAPCC. See Average adjusted per capita cost

ABA. See Architectural Barriers Act

ABA Guidelines. See Architectural and Transportation Barriers Compliance Board

ABLEDATA, 212

Access Board. See Architectural and Transportation Barriers Compliance Board

Access issues, FCC regulations concerning, 505506

Access to assistive technologies

financial, 214215, 253265

recommendations concerning mainstream technologies, 218219

through noninsurance programs, 273275

Access to health care and support services, 68, 165177, 433439

administrative and judicial responses to continuing problems with ADA compliance, 175177

data on difficulties with physical and communications access in health care facilities, 168170

improving the accessibility of health care facilities and strengthening implementation of the provisions of the ADA related to health care facilities, 67

making needed assistive services and technologies more available to people with disabilities, 78



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The Future of Disability in America Index A AAA Foundation for Traffic Safety, 542 AAMC. See Association of American Medical Colleges AAP. See American Academy of Pediatrics AAPCC. See Average adjusted per capita cost ABA. See Architectural Barriers Act ABA Guidelines. See Architectural and Transportation Barriers Compliance Board ABLEDATA, 212 Access Board. See Architectural and Transportation Barriers Compliance Board Access issues, FCC regulations concerning, 505–506 Access to assistive technologies financial, 214–215, 253–265 recommendations concerning mainstream technologies, 218–219 through noninsurance programs, 273–275 Access to health care and support services, 6–8, 165–177, 433–439 administrative and judicial responses to continuing problems with ADA compliance, 175–177 data on difficulties with physical and communications access in health care facilities, 168–170 improving the accessibility of health care facilities and strengthening implementation of the provisions of the ADA related to health care facilities, 6–7 making needed assistive services and technologies more available to people with disabilities, 7–8

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The Future of Disability in America promoting models of coordinated chronic care and other strategies for improving the transition of young people from pediatric to adult health care, 8 public policies to improve health care facility and equipment accessibility, 170–175 reducing barriers to health insurance for people with disabilities, 7 Access to health insurance disability and risk adjustment of payments to health plans, 239–248 health insurance coverage for people with disabilities, 224–235 health insurance markets and their limits for people with disabilities, 235–239 recommendations, 248–252 and the role of risk-adjusted payments to health plans, 222–252 Access to legal services, 470–471 Access to personal assistive services, financial, 265–273 Access to telecommunications technology ADA, 491–516 federal laws, 482–491 Hearing Aid Compatibility Act, 486–491 introduction, 478–482 key laws and policies, 478–518 policy implications of technological change, 516–517 Telecommunications for the Disabled Act, 482–486 Accessibility enhancing through universal design of mainstream technologies, 200–203 of health care facilities, improving, 6–7, 179–182 of technologies, 2, 4, 13–14 Accessible design, defining, 189 Accreditation Council on Graduate Medical Education (ACGME), 132 ACP. See American College of Physicians Action, defining, 44 Activities, defining, 38 Activities of daily living (ADL), 50, 54, 82–83, 89–92, 97, 227, 261, 267, 413–415 Activity limitations, 73–75 clarifying, 42–44 defining, 38 ADA. See Americans with Disabilities Act ADA Accessibility Guidelines, 173, 493, 507 Adaptive assistive devices, defining, 187 ADL. See Activities of daily living Administrative responses, to continuing problems with ADA compliance, 175–177 Adolescent medicine, 105 Adolescent transitions complexity of, 104 income support and work, 112–114 Medicaid and other public health programs, 108–110 other environmental factors, 114–115 populations “at risk” for, 102–103 public policy and other environmental factors, 107–115 transition support and public schools, 110–112 Adoption of available technologies, 211–216 Adoption of the ICF, 42–47 adding quality of life to the framework, 44–45 categorizing personal factors, 45 clarifying activity limitations and participation restrictions, 42–44 as the conceptual framework for disability monitoring and research, 3, 5 depicting functioning and disability as dynamic processes, 46–47 developing environmental factors, 46 recognizing secondary conditions, 46 recommendations concerning, 59–62 Adult care models. See also Younger adults with disabilities for organizing pediatric and adult care for individuals with chronic health conditions or disabilities, 118–119 Adult health care providers, as a barrier to successful transition planning and outcomes, 126 Age, demographic trends and increasing disability, 17–19 Agency for Healthcare Quality and Research (AHRQ), 4, 11, 62, 158–159, 228, 293, 307 Agency on Disability and Rehabilitation Research, 317

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The Future of Disability in America Aging atypical, 154 into disability, 143 with disability, 143 life span perspective on, 100–101, 143–144 AHRQ. See Agency for Healthcare Quality and Research AIA. See American Institute of Architects Aid to Families with Dependent Children, 268n Albertson’s, Inc. v. Kirkingburg, 465–466 Alexander v. Choate, 448 Alternative risk adjustment models, predictive ratios for, 412 Alzheimer’s disease, 151–152 American Academy of Family Physicians, 121 American Academy of Pediatrics (AAP), 102, 121, 152 American Academy of Physical Medicine and Rehabilitation, 187, 262 American Association for Disability and Health, 302 American College of Physicians (ACP), 118, 121 American Community Survey, 56, 62, 64, 68, 70, 84 Content Test disability items, 52 Disability Work Group, 52 American Foundation for the Blind, 213 American Institute of Architects (AIA), 171n American Medical Association, 434 American National Standards Institute (ANSI), 172, 489, 491 American Printing House for the Blind, 516 American Psychatric Association, 39 American Sign Language (ASL), 430 Americans with Disabilities Act (ADA), 3–4, 12, 24, 55, 110n, 163, 170–177, 180, 230, 404, 426–452, 491–516, 520, 530–540, 552 access to health care, 433–440 challenges to coverage design, 448–451 closed-captioning mandates, 511–515 complainants with psychiatric disabilities, 471 discriminatory administration challenges, 447–448 discriminatory allocation of resources within an established plan design, 442–447 effect on employment rates and wages, 458 as extending and expanding the Rehabilitation Act, 34 health care coverage and financing, 440–451 historical background and legislation, 491–493 interaction between ADA violations and medical malpractice, 439–440 introduction, 426–428 Olmstead decision, 442–447 overview, 428–432, 440–442 physical access to health care services, 433–439 recommendations, concerning, 180 Section 255 of the Telecommunications Act, 503–507 Section 508 of the Rehabilitation Act, 507–508 Section 713 of the Communications Act, 511–515 settlement involving the Washington Hospital Center, highlights of, 177 and subtle forms of discrimination, 439 summary, 451–452 Telecommunications Accessibility Enhancement Act, 502–503 Television Decoder Circuitry Act, 508–511 Title IV telecommunications relay services, 481, 494–502 Amputee Coalition of America, 302 ANSI. See American National Standards Institute Architectural and Transportation Barriers Compliance Board (Access Board), 4, 7, 12–13, 171–174, 180–182, 192, 202, 209–210, 218–219, 435, 438, 452, 481 Architectural Barriers Act (ABA), 170, 172, 180, 478, 502 ASL. See American Sign Language Assistive technologies and services for people with disabilities, 2, 183–221. See also Access to assistive technologies challenges to development and effective provision and use, 203–216 coverage, 258–265 defining, 187n

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The Future of Disability in America enhancing accessibility through universal design of mainstream technologies, 200–203 extent of use of, 194–196 key policies that promote, 192–194 Medicaid coverage, 263–265 Medicare coverage, 258–263 outcomes of use of, 196–200 private health insurance coverage, 265 public health plan coverage of, 260 recommendations, 216–221 types of technologies used, 186–191 Assistive Technology Act, 186–188, 192–193, 212, 273 Assistive Technology Development Fund, 207 Assistive technology devices, defining, 186–187 Assistive Technology Programs, 115 Associated conditions, defining, 142 Association for the Advancement of Medical Instrumentation, 173 Association of American Medical Colleges (AAMC), 132 Asthma Follow-up Survey, 53n AT&T, 482–483, 503 Attitudes, as an environmental factor, 114 Atypical aging, 154 Automated teller machines (ATM), 202 Available technologies awareness, adoption, and maintenance of, 211–216 consumer awareness, 211–212 defined, 186–189 financial access, 214–215 guidance for health professionals, 213–214 maintenance of, 211–216 through the consumer’s eyes, 215–216 Average adjusted per capita cost (AAPCC), 244–246, 410, 413 Awareness, of available technologies, 211–216 B Balanced Budget Act, 245, 254n Barden et al. v. Sacramento, 547 Barriers created by mainstream technologies, examples of, 201 to health insurance for people with disabilities, reducing, 7 Barriers to successful transition planning and outcomes, 123–129 adult health care providers, 126 family, 126 pediatrician, 126 for young people with disabilities, examples of, 125 Behavioral and Social Science Research Program, 305 Behavioral Risk Factor Surveillance System (BRFSS), 53, 55, 63, 70, 170 Asthma Follow-up Survey, 53n Beverly Foundation, 542–544 Biomimetic MicroElectronic Systems ERC, 304n BLS. See Bureau of Labor Statistics BMI. See Body mass index criteria Body functions and structures, defining, 38 Body mass index (BMI) criteria, 79 Bragdon v. Abbott, 434 BRFSS. See Behavioral Risk Factor Surveillance System BTS. See Bureau of Transportation Statistics Built environments, 114 Bureau of Labor Statistics (BLS), 4, 10, 55, 58–63, 127 Bureau of Transportation Statistics (BTS), 521, 523–524 Buses, 532–535 C California, 58n, 176, 403 California Health Interview Survey, 170 Call to Action to Improve the Health and Wellness of Persons with Disabilities, 28 Canada, 143, 535 Capacity building, for disability research, continued need for, 313–314 Capacity qualifier, defining, 40n Capitation payments to health plans achieving payment accuracy for populations with disabilities, 408–409 adequacy of, for people with disabilities, 408–415

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The Future of Disability in America commonly used risk factors producing different levels of payment accuracy, 410–413 Medicare example, 413–415 predictive accuracy of risk adjusters, 409–410 Captioned telephone relay services, 496–497 Care coordination, 8. See also Chronic care systems and transition planning, 124 for young people with disabilities, examples of barriers to, 125 Caregivers, spouses and families as, 19. See also Families, Personal assistance services CARF. See Commission on Accreditation of Rehabilitation Facilities CARF Guide to Accessibility, 181 CDC. See Centers for Disease Control and Prevention Center for Assistive Technology, 215 Center for Birth Defects and Developmental Disabilities, 6 Center for Health Program Development and Management, 407 Center for Injury Prevention and Control, 302 Center for Personal Assistance Services, 274 Center for Universal Design, 189n Centers for Disease Control and Prevention (CDC), 2, 4, 6, 9, 11–15, 19, 50, 63–64, 77, 79, 134–135, 151, 178–179, 220–221, 293, 301–303, 315–317, 436 as the lead agency for a federal disability prevention initiative, 28, 30 questionnaire on health-related quality-of-life, 45 Centers for Independent Living program, 115, 274 Centers for Medicare and Medicaid Services (CMS), 62, 64, 198n, 206, 225–226, 242–243, 254n, 262, 266n, 268n, 278, 307, 396–397, 400–401, 414–415, 421 Centers on the Demography of Aging, 305 Cerebral palsy, 155 literature on secondary conditions in, 148–149 Chartbooks on disability, recent, 67 Chemical, Bioengineering, Environmental, and Transport Systems Division, 303 Child Health Assessment and Monitoring Program, 53 Children. See also Children with special health care needs with activity limitation, 75–76 characteristics of, that may affect the complexity of health care transitions, 104 health insurance for, 232–235 trends in overweight (obesity) for, 79 Children with special health care needs care coordination, 123–128 defining, 74, 102, 233 goals for MCHB, 101–102, 117 insurance coverage, 232–235 surveys, 102, 118 Title V, 110, 128 Christopher and Dana Reeve Paralysis Resource Center, 275 Christopher Reeve Foundation, 275 Chronic care model, 118–119 Chronic care systems, 8 features of disability-competent, 120 Chronic health conditions, 398 causing limitations of activities, 71 Chronic Illness and Disability Payment System, 243–244 Chronic pain, 149 Civil Rights Act, 433, 491, 530 Cleveland v. Policy Management Systems Corp., 472 Clinical Science Research and Development Service, 299 Closed-captioning mandates in the Communications Act, 511–515 emergency alert system, 514–515 emergency captioning, 513–514 FCC regulations, 512–513 historical background and legislation, 511–512 CMS. See Centers for Medicare and Medicaid Services CMS Hierarchical Conditions Categories model (CMS-HCC), 245, 414 Coalition of Organizations for Accessible Technology (COAT), 517 COBRA. See Consolidated Omnibus Budget Reconciliation Act

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The Future of Disability in America Coding diagnoses, 122, 422 environmental factors, 46 Coin-operated telephones, 485 Commission on Accreditation of Rehabilitation Facilities (CARF), 181 Commission on Education of the Deaf, 509 Committee on Transition Care, 121 Commonly used risk factors producing different levels of payment accuracy, 410–413 diagnosis codes and functional status, 410–413 health status measures as risk factors, 410–413 prior utilization as a risk factor, 410 Communications Act, 480, 494 closed-captioning mandates, 511–515 emergency alert system, 514–515 emergency captioning, 513–514 FCC regulations, 512–513 historical background and legislation, 511–512 Community-dwelling Medicare beneficiaries, having difficulty performing personal care activities without help or special equipment, 91 Community Transportation Association of America, 542, 544 Community transportation resources, 530–549 buses, 532–535 complementary paratransit services, 535–542 heavy, commuter, and light rail systems, 531–532 other community providers and obligations, 542–548 private transportation sector, 548–549 public transportation agencies, 530–531 Comorbidities, 142 Compatibility issues FCC regulations concerning, 506–507 rules for hearing aids with wireless telephones, 490 Competition and consumer choice, in health insurance markets for people with disabilities, 239 Complementary paratransit services, 535–542, 553 cost and ridership patterns for people with disabilities, 537 Complexity, defining, 44 Computer and electronic technologies, 23, 184, 187–188. See also Section 508 of the Rehabilitation Act Conditions potentially contributing to disability, potentially explaining trends, 77–80 Confidentiality considerations, 497 Congressional Budget Office, 96 Connecticut, 257 Consolidated Omnibus Budget Reconciliation Act (COBRA), 229, 232 Consortium on Spinal Cord Medicine (CSCM), 148, 199 Consumer-driven plans, and risk segmentation in insurance markets, 403–404 Consumers available technologies through the eyes of, 215–216 awareness of available technologies, 211–212 involvement at the research and development stage, 208–210 Coordinated programs, 4, 14, 314–315. See also Care coordination for human service, 545 Coordination of disability research. See Disability research; Federal disability research programs Cordless telephones, in the Hearing Aid Compatibility Act, 491 Cornell University, 50, 64 Costs. See also Medical costs, and populations; Rising costs; Societal costs of health care for working-age adults, 237 recovery considerations, 497–498 Council on Access and Mobility, 545 Court decisions, plaintiff victories from, 468 Courthouse Access Advisory Committee, 174 Coverage of assistive technologies, 253–286 access to assistive technologies and services through noninsurance programs, 273–275 assessing expansions in the context of rising costs, 282–283 challenges to design of, 448–451

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The Future of Disability in America medical necessity and, 256–257 recommendations, 283–286 rising costs and the challenge of expanding coverage of assistive services and technologies, 276–283 types of limitations on coverage, 255–258 Coverage of personal assistance services, 265–273 Coverage of specific services or products, criteria used to determine, 283 CPS. See Current Population Survey Craig Handicap Assessment and Reporting Technique, 200n Cross-condition studies, literature on, 152–153 CSCM. See Consortium on Spinal Cord Medicine Current Population Survey (CPS), 55–56, 63, 84, 202, 456 Current Procedural Terminology, coding scheme for physician services, 122 D Data on disability. See also Disability trends on difficulties with physical and communications access in health care facilities, 168–170 issues influencing the accuracy of risk scores, 415–417 recent statistical, 67 Declines, in health conditions that contribute to disability in childhood, 81–82 Defense Advanced Research Projects Agency, 308 Deficit Reduction Act, 109, 135, 263, 271–272, 277 Developmental disorders, contributing to disability, 2 DHHS. See U.S. Department of Health and Human Services Diagnostic and Statistical Manual of Mental Disorders (DSM IV TR), 39 Disability common conceptual framework for, 36 defining, 38, 68n definition and monitoring of, 35–64 depicting as a dynamic process, 46–47 estimates of, 66–72 in middle life, conditions contributing to, 86–88 overview of national surveys that include measures of, 48 projecting the future of, 95–97 rates by sex and age, 69 recent chartbooks and other profiles of statistical data on, 67 and related societal trends, 17–19 and risk adjustment of payments to health plans, 239–248 umbrella term for physical or mental impairments, activity limitations, and participation restrictions, 5, 38 Disability and Business Technical Assistance Centers, 181 Disability and Health Program, 301 Disability and Health Team, 6, 301, 303, 316 Disability-competent chronic care systems, features of, 120 Disability in America: Toward a National Agenda for Prevention, xiii, 2, 17, 19, 30, 59, 66, 99, 137–138, 162, 184, 222, 224, 254, 385 developments since publication of, 22–25 Disability monitoring, 2–5, 54–59 adopting and refining the ICF as the conceptual framework for disability monitoring and research, 3, 5 creating a comprehensive system for, 5 developing and implementing panel surveys, 56–59 expanding measures of the environment, 56 expanding the goals of, 54–56 progress in, xiii, 49–54 recommendations concerning, 4, 10, 59–64 Disability Payment System, 243 Disability research, 5–6, 287–320. See also Federal disability research programs challenges of organizing and coordinating, 308–314 defining, 288n federal sponsors of, 290 recommendations concerning, 14–15, 314–319 Disability Statistics Subcommittee, 63

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The Future of Disability in America Disability trends, 65–97 current estimates of disability and related conditions, 66–72 in early life, 73–82 in late life, 88–95 in middle life, 82–88 monitoring trends in disability, 72–73 projecting the future of disability in America, 95–97 Discrimination administrative challenges, 447–448 and health insurance and employment, 230–231 more subtle forms of, 439 nondiscrimination provisions of ADA, 174 Disease management, 280n Distribution of difference, between HMO and fee-for-service mean risk factors for Medicare beneficiaries, 400 Doe v. Mutual of Omaha, 450 Down syndrome, literature on secondary conditions in, 150–152, 156 Down Syndrome Medical Interest Group, 152 Driving and the aging of society, 526–529 self-regulation by people with disabilities, 528 DSM IV TR. See Diagnostic and Statistical Manual of Mental Disorders Dumont-Driscoll, Marilyn, 133 Durable medical equipment, defining, 188 Dynamics of Economic Well-Being System, 57, 63–64 E Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, for Medicaid-eligible children, 80, 109, 129, 232, 257, 263–264, 268 Early Childhood Longitudinal Study, 58 EAS. See Emergency alert system Education of health care professionals health care professionals, directions for research, 156–158 pediatricians and adult care physicians, 130–133 recommendations concerning improvements to, 159–161 Education for All Handicapped Children Act, 80, 453. See also Individuals with Disabilities Education Act (IDEA) EEOC. See Equal Opportunity Employment Commission Effectiveness of Title I, 464–472 concerning the ADA, 464–472 countervailing policies, 471–472 in the courts, 465–469 enforcement system, 469–471 “Electronic newsroom technique” (ENT), 513 Electronic technologies, advances in, 2. See also Computer and electronic technologies Emergency access issues, 499–502 Emergency alert system (EAS), in Section 713 of the Communications Act, 514–515 Emergency captioning, in Section 713 of the Communications Act, 513–514 Emergency Treatment and Labor Act, 433 Employers large and small, and risk segmentation in insurance markets, 401–403 practices and attitudes, 460–463 Employment rates and wage disparities, 456–460 trends among adults with disabilities, 85–86 Employment-based insurance, for younger adults with disabilities, 228–231 Employment discrimination provisions of ADA books, articles, and reports, 473–477 brief overview, 455–456 cases, 473 implementation and impact, 453–477 introduction, 453–454 measuring the effects of Title I, 456–464 rethinking the “cause” of the effectiveness of Title I, 464–472 statutes, regulations, and legislative materials, 473 Employment Retirement Income Security Act, 231n, 402 Empowerment effects, 463–464

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The Future of Disability in America Enabling America: Assessing the Role of Rehabilitation Science and Engineering, xiii, 2, 20, 30, 36, 99, 138, 207–208, 210, 288, 385 developments since publication of, 22–25 Engineering Research Centers (ERCs), 304n Enhancing Education for Chronic Illness Care initiative, 132 ENT. See “Electronic newsroom technique” Environmental factors accessible health care facilities, 165–177 coding in ICF, 46 context of disability in health care facilities, 162–182 defining, 39 expanding measures of, to improve disability monitoring, 56 further development of, 46 recommendations concerning, 4, 12–13, 178–182 research on the role of the environment in disability, 164–165 Environmental modifications, defining, 187 EPSDT. See Early and Periodic Screening, Diagnostic, and Treatment benefit Equal Opportunity Employment Commission (EEOC), 429, 468–471 ERCs. See Engineering Research Centers “Ever disabled” population, 397 Executive Orders, 55, 545 Extension of health insurance coverage, key principles for, 284 F Fair employment practice agencies (FEPAs), 469–471 Families affecting health care transitions, 106–107 and assistive technologies, 199–200 as caregivers, 19 increased stress on, 1 size of, 19 Family Opportunity Act, 109 FCC. See Federal Communications Commission FDA. See U.S. Food and Drug Administration Federal Communications Commission (FCC), 429, 480–482, 495 Federal Communications Commission (FCC) regulations, 505–507 accessibility, 505–506 in the Hearing Aid Compatibility Act, 487 Section 255 of the Telecommunications Act, 505–507 in Section 713 of the Communications Act, 512–513 in the Television Decoder Circuitry Act, 510–511 usability, 506 Federal Communications Commission (FCC) regulations in the Telecommunications for the Disabled Act, 485–486 coin-operated telephones, 485 telephones frequently needed by people with hearing loss, 485 telephones provided for emergency use, 485 Federal Communications Commission (FCC) regulations in Title IV telecommunications relay services, 495–497 captioned telephone relay services, 496–497 Internet protocol relay services, 496 other mandated services, 497 Spanish relay services, 497 speech-to-speech relay services, 496 text-to-speech relay services, 495 video relay services, 496 voice and hearing carryover, 497 Federal disability research programs, 6, 289–308 increasing the visibility and coordination of, 6, 315–317 National Center for Medical Rehabilitation Research, 295–299 National Institute on Disability and Rehabilitation Research, 289–295 other sponsors of disability research, 300–308 status of federal disability research efforts, 289–300 VA Rehabilitation Research and Development Service, 299–300

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The Future of Disability in America Federal Interagency Forum on Child and Family Statistics, 18 Federal Transit Administration (FTA), 531–532 FEPAs. See Fair employment practice agencies Financial assistance for assistive technology in selected federal programs, summary, 274 Foster care, 107 Foundation for Physical Medicine and Rehabilitation, 187 FTA. See Federal Transit Administration Functional Independence Measure, 200n Functioning common conceptual framework for limitations of, 36 defining, 38 Funding considerations, 497–498. See also Costs for clinical, health services, social, behavioral, and other disability research that is commensurate with the need, 5–6 in Title IV telecommunications relay services, 497–498 trends for NIDRR, NCMRR, and VA RR&D, 291 Future issues in Title IV telecommunications relay services, 498–502 emergency access, 499–502 interoperability of VRS protocols, 499 VRS numbering, 498–499 Future of disability in America in a public health context, 27–30 Future of Public Health, The, 27 G GAO. See Government Accountability Office General Accounting Office. See Government Accountability Office General Services Administration, 172, 192 Germany, implementing the ICF in, 43 Goals of health care transition planning for young people, 103 of monitoring, expanding to improve disability monitoring, 54–56 Government Accountability Office (GAO), 254n, 258, 293, 542 Government role, in research and development, 207–208 GTE, 483 Guardians, affecting health care transitions, 106–107 Guidance on available technologies, for health professionals, 213–214 Guidelines for Design and Construction of Health Care Facilities, 171n H HAC. See Hearing aid compatible phones HBRA. See Health-based risk adjustment HCBS. See Home- and Community-Based Service waiver program HCO. See Voice and hearing carryover (VCO and HCO) Health and Retirement Study, 53, 57, 305 Health-based risk adjustment (HBRA), 415–416, 420. See also Risk adjustment lessons from purchasers who have implemented, 406–408 risk segmentation in insurance markets and the need for, 398–406 Health care facilities selected universal design and other features for, 167 strengthening implementation of ADA provisions related to, 6–7, 34 Health Care Financing Administration, 245, 309n. See also Centers for Medicare and Medicaid Services (CMS) Health care services and systems, 115–130 approaches to health care transitions for young people, 120–123 barriers to successful transition planning and outcomes, 123–129 organization of pediatric and adult care for individuals with chronic health conditions or disabilities, 117–120 research on health care transition planning, 129–130 Health care transitions for young people with disabilities, 98–135 adolescent transitions, public policy, and other environmental factors, 107–115 approaches to, 120–123

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The Future of Disability in America characteristics of child and adolescent health that may affect the complexity of, 104 critical transition from child to adult, 101–103 directions for research on, 131 education of pediatricians and adult care physicians, 130–133 examples of barriers to, 125 family and guardian factors, 106–107 health care services and systems, 115–130 individual and family factors affecting, 104–107 recommendations, 133–135 support and public schools, 110–112 transitions to adult care in a life span perspective, 100–101 with and without activity limitations, usual sources of, 116 Health conditions associated with disability in late life, 94 contributing to disability, 2 defining, 38 Health insurance coverage for people with disabilities, 224–235. See also Medicaid programs; Medicare for children, 232–235 for older adults with disabilities, 225–226 for younger adults with disabilities, 227–232 Health insurance markets and their limits for people with disabilities, 235–239 competition and consumer choice, 239 market failure and publicly financed health insurance for certain groups, 237–238 standard models of insurance, 235 violations of standard insurance models in health care, 235–237 Health maintenance organization (HMO), 116, 223, 400, 416 Health-related quality-of-life, 44 Health Resources and Services Administration, 101–102 Health Services Research and Development Service, 299–300 Health status measures as risk factors, diagnosis codes and functional status, 410–413 Healthy & Ready to Work Center, 102 Healthy People 2000, 28 Healthy People 2010, 27–28, 55, 138, 184, 302 public health objectives in, 29 Hearing aid compatibility, 483–484 Hearing Aid Compatibility Act, 481, 486–491 cordless telephones, 491 FCC regulations, 487 historical background and legislation, 486–487 wireless telephones, 488–491 Hearing aid compatible (HAC) phones, 479 Hill Burton Act. See Hospital Survey and Construction Act Historical background of the ADA, 491–493 of disability policy development, 30–33 of the Hearing Aid Compatibility Act, 486–487 of Section 255 of the Telecommunications Act, 503–505 of Section 713 of the Communications Act, 511–512 of the Telecommunications for the Disabled Act, 482–485 of the Television Decoder Circuitry Act, 508–509 HMO. See Health maintenance organization Home- and Community-Based Service (HCBS) waiver program, 269–272 Home health benefits coverage of personal care services as, 267 personal assistance services under Medicaid, 269 Hospital Survey and Construction Act, 433 Human functioning, components and domains of in the ICF, 41 I IADL. See Instrumental activities of daily living iBOT wheelchairs, 197n, 206 ICC. See Interagency Coordinating Council ICD-10. See International Classifications of Diseases

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The Future of Disability in America coverage of personal assistance services, 268–273 early periodic screening, detection, and treatment benefits, 264 and other public health programs, 108–110 personal assistance services and home health benefits, 269 recommendations concerning, 250–252 for younger adults with disabilities, 231–232 Medical and Prosthetic Research program, 299 Medical costs, and populations, 397–398 Medical Expenditure Panel Survey, 228, 233, 236, 259n Medical home model of pediatric care, 8 for organizing pediatric and adult care for individuals with chronic health conditions or disabilities, 117–118 Medical necessity, and coverage, 256–257 Medical Rehabilitation Coordinating Committee, 311–312, 319 Medicare, 4, 7, 13–14, 23–26, 30, 33, 114, 119, 128, 212, 222–226, 238–243, 248–250, 285–286 beneficiaries over age 65 living in nursing homes and other facilities, 93 coverage of assistive technologies, 258–263 coverage of personal assistance services, 266–268 coverage of personal care services as a home health service, 267 initial legislation for, 33 recommendations concerning, 250–252 and risk segmentation in insurance markets, 399–401 for younger adults with disabilities, 231–232 Medicare Advantage plans, 226, 395, 397, 399, 409 Medicare Current Beneficiary Survey, 54, 57, 68, 87, 90–92, 170 Medicare Modernization Act, 310n Medicare Payment Advisory Commission (MedPAC), 246, 255n, 267 Medicare+Choice plans, 226 Medicine-Pediatrics Program Director’s Association, 121 “Medigap” insurance, 225–226 MedPAC. See Medicare Payment Advisory Commission Meltzer v. Kaiser Permanente, 176 Mental Health Parity Act, 231 Milestones in U.S. disability policy, timeline of, 31–32 Minimum standards. See Mandatory minimum standards Minnesota, 413 Models calibration issues influencing the accuracy of risk scores, 419–420 of coordinated chronic care, 8 Monitoring trends in disability, 72–73 Murphy v. United Parcel Service, 33, 466–467 N National Academy of Sciences, 20, 22n National Aeronautics and Space Administration, 310n National Captioning Institute, 508 National Center for Health Statistics, 4, 10, 49n, 59–64, 72 National Center for Medical Rehabilitation Research (NCMRR), 4–6, 14–15, 20, 146, 198, 289–290, 295–299, 315–317, 386 funding trends for, 291 National Center for Transit Research, 539 National Center of Medical Home Initiatives for Children with Special Health Care Needs, 117n National Center on Birth Defects and Developmental Disabilities (NCBDDD), 301–302 National Center on Secondary Education and Transitions, 111 National Children’s Study, 59, 101 National Council on Disability, 111, 193, 214, 467, 531 National disability monitoring system, 47–59 improving disability monitoring, 54–59 progress in disability monitoring, 49–54 recommendations concerning, 62–64 National Early Intervention Longitudinal Study, 58 National Emphysema Treatment Trial, 309

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The Future of Disability in America National Health and Nutrition Examination Surveys, 82, 88 National Health Interview Survey (NHIS), 49–51, 55–56, 63, 67n, 68, 70–75, 77, 83–84, 87–92, 102, 117, 168, 184, 199, 233–234, 456, 521 Disability Supplement, 137 redesigned, disability-related content in, 51 National Health Service (UK), 102, 122 National Heart, Lung, and Blood Institute, 306 National Institute for Occupational Health and Safety, 301n National Institute of Biomedical Imaging and Bioengineering, 305 National Institute of Child Health and Human Development (NICHD), 295 National Institute of Mental Health, 310n National Institute of Neurological Disorders and Stroke, 305 National Institute of Nursing Research, 305 National Institute on Aging (NIA), 53, 62, 305 National Institute on Deafness and Other Communication Disorders, 305 National Institute on Disability and Rehabilitation Research (NIDRR), 4, 12–15, 20, 50, 64, 102, 138, 146, 178–179, 181, 192, 198, 220–221, 274, 289–295, 315–317, 386 funding trends for, 291 National Institutes of Health (NIH), 2, 4, 6, 12, 14–15, 178–179, 217, 289–295, 304–307, 315–317 Patient-Reported Outcomes Measurement Information System, 304–305 National Instructional Materials Accessibility Standard, 516 National Long-Term Care Survey, 53, 57, 90, 92, 184, 245, 305 National Longitudinal Survey of Labor Market Experience, Youth Cohort, 58, 75n National Longitudinal Transition Study-2, 58 National Nursing Home Surveys, 92–93 National Organization on Disability (NOD), 519 National Science Foundation (NSF), 217, 289, 303–304 National Society for Crippled Children, 172n National Spinal Cord Injury Statistical Center, 146 National Study of Women with Physical Disabilities, 170 National Survey on Assistive Technology and Information Technology, 49n National Transit Database, 537 NCBDDD. See National Center on Birth Defects and Developmental Disabilities NCMRR. See National Center for Medical Rehabilitation Research Neuropathic pain, 147–148 New Freedom Initiative, 194n, 262, 545 NHIS. See National Health Interview Survey NIA. See National Institute on Aging NICHD. See National Institute of Child Health and Human Development NIDRR. See National Institute on Disability and Rehabilitation Research NIDRR-supported Rehabilitation Engineering Research Centers, focus of, 209 NIH. See National Institutes of Health NOD. See National Organization on Disability NOD-Harris Interactive poll, 521 Non-group insurance, and risk segmentation in insurance markets, 404 North Carolina, 118, 271 NSF. See National Science Foundation O Obesity in adults, 88–89. See also Overweight (obesity) in children Office for Civil Rights, 438–439 Office of Disability, Aging, and Long-Term Care Policy, 307–308 Office of Disability and Health, 4, 6, 14–15, 315–317 Office of Special Education and Rehabilitative Services, 292n Ohio, 156 Older adults with disabilities, health insurance for, 225–226

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The Future of Disability in America Older Americans Research and Services Center Instrument, 200n Olmstead v. L.C., 33, 268, 270, 441, 450 and discriminatory allocation of resources within an established plan design, 442–447 One-Stop employment centers, 192 Organization of disability research, 287–320 challenges of, 308–314 continued need for capacity building, 313–314 federal disability research programs, 289–308 final thoughts, 319–320 recommendations concerning, 4, 14–15, 314–319 weak coordinating mechanisms, 310–313 Outcomes of assistive technology use, 196–200 Overweight (obesity) in children, trends in, 79 P PacAdvantage, 403 PACE. See Program of All-Inclusive Care for the Elderly Pain in cerebral palsy, 149 chronic, 149 identified in crop-condition studies, 153 neuropathic, 147–148 in poliomyelitis, 149–150 in spinal cord injury, 147–148 Panel surveys, developing and implementing to improve disability monitoring, 56–59 Paralyzed Veterans of America (PVA), 146, 148, 158 Paratransit service coverage, and potential expansion costs, 541 Participation clarifying restrictions on, 42–44 defining, 38–39 Pathology, common conceptual framework for, 36 Patient-Reported Outcomes Measurement Information System (PROMIS), 49n, 197, 304–305 Payment accuracy, for populations with disabilities, achieving, 408–409 Payment for adults with functional limitations, sources of, 229 Pedestrian environment, local governments and, 546–548 Performance qualifier, defining, 40n Personal assistance services. See also Personal care services coverage of, 265–273 coverage under Medicaid, 268–273 coverage under Medicare and private insurance, 266–268 examples of federal programs (other than Medicare and Medicaid) that provide some support for, 275 and Medicaid home health benefits, 269 Personal assistive devices, defining, 187 Personal care services. See also Personal assistance services civilians needing help with, 90 coverage of as a home health service under Medicare, 267 and routine care limitations, 82–83, 89–92 Personal factors categorizing, 45 defining, 39, 105–106 Physical Disabilities Branch, 296n Policies that promote assistive technology and universal design of mainstream technologies, 2, 192–194. Assistive Technology Act, 193 countervailing, 471–472 environment of disability, 2, 30–34 implications of technological change, 516–517 to improve health care facility and equipment accessibility, 170–175 Section 508 of the Rehabilitation Act, 192–193 Poliomyelitis, literature on secondary conditions in, 149–150 Postpolio syndrome, 150 Postschool experiences of young people with disabilities, selected survey findings about, 113 Poverty, 108, 206, 234–235 Pre-Elementary Education Longitudinal Study, 58

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The Future of Disability in America Prediction of Medicare beneficiary costliness, by risk adjustment method, 247 Predictive accuracy of risk adjusters, 409–410 President’s Committee on Employment of the Physically Handicapped, 172n Preventing and managing risk selection, and risk segmentation in insurance markets, 405–406 Prevention and management of secondary conditions, 11, 138, 159–161 Principal Inpatient Diagnosis-Diagnostic Cost Group model, 245 Prior utilization, as a risk factor, 410 Private health insurance coverage of assistive technologies, 265 coverage of personal assistance services, 266–268 Private sector role, in research and development, 205–207 Private transportation sector, 548–549 Product research and development of assistive technologies, 205–211 challenge of technology transfer and commercial application, 210–211 involvement of consumers at the research and development stage, 208–210 role of government in research and development, 207–208 role of the private sector in research and development, 205–207 Professional awareness, recommendations for increasing, 221 Professional education, 8–9 developing educational programs, evidence-based reviews, practice guidelines, and other materials to support health professionals in caring for people with disabilities, 8–9 launching a national public health campaign to increase public and health care professional awareness of assistive and accessible technologies, 9 recommendations concerning, 134, 159–161 Professional transition model, 122 Program of All-Inclusive Care for the Elderly (PACE), 410, 412, 415 Projections, of the future of disability in America, 95–97 PROMIS. See Patient-Reported Outcomes Measurement Information System Psychiatric disabilities, complainants with, 471 Public awareness, recommendations for increasing, 220–221 Public education, 8–9 launching a national public health campaign to increase public and health care professional awareness of assistive and accessible technologies, 9 recommendation on, 219–221 Public health and disability, 27–30 objectives, 29 Public policy timeline, 31–33 Public transportation agencies, 530–531 PVA. See Paralyzed Veterans of America Q Quality-of-life adding to the ICF framework, 44–45 CDC questionnaire on, 45 defined, 44 health-related, 44 Quality of Life Technology ERC, 304n R Rail systems, heavy, commuter, and light, 531–532 RAIS. See Risk Adjustment Impact Study “Reasonable accommodations,” defining, 455 Recommendations, 10–15, 216–221, 283–286, 314–319 Recommendations concerning access to health insurance and the role of risk-adjusted payments to health plans, 248–252 improving risk adjustment methods, 248–250 other issues in Medicare and Medicaid, 250–252 Recommendations concerning adopting and improving the ICF, 59–62

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The Future of Disability in America Recommendations concerning assistive and mainstream technologies for people with disabilities, 4, 13–14, 216–221 accessible mainstream technologies, 218–219 increasing coverage and access, 283–286 increasing professional awareness, 221 increasing public awareness, 220–221 innovation and technology transfer, 217–218 Recommendations concerning definition and monitoring of disability, 4, 10, 59–64 Recommendations concerning health care transitions for young people, 4, 10–11, 133–135 Recommendations concerning organization and support of disability research, 4, 14–15, 314–319 directions for research, 314–315 improving disability research coordination and collaboration, 317–319 increasing funding and visibility of federal disability research, 315–317 Recommendations concerning secondary conditions and aging with disability, 10–12, 158–161 improving the education of health care professionals, 159–161 organizing the knowledge base, 158–159 Recommendations concerning the environmental context of disability, 4, 12–13, 178–182 expanding research on environmental factors, 178–179 improving accessibility of health care facilities, 179–182 Rehabilitation Act, 33–34, 110n, 170, 172, 189, 202, 208n, 292n, 317, 491, 504 Electronic Equipment Accessibility amendment, 192 Section 504 of, 430 Section 508 of, 192–193, 481 Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), 212n, 213–214 Rehabilitation engineering research, defining, 288n Rehabilitation Engineering Research Centers, 168, 207, 210, 217, 293 focus of NIDRR-supported, 209 Rehabilitation Research and Development Service (RR&D), 5, 289, 299–300 funding trends for, 291 Rehabilitation Research and Training Centers, 293 Rehabilitation science, defining, 288n Rehabilitation Services Administration, 310 Relative risk differences, between high- and low-risk participating health plans, 402 Research. See also Federal disability research programs; Organization of disability research challenges, knowledge gaps, and research directions, 154–156 on environmental factors, recommendations concerning expansion of, 178–179 on health care transition planning, 129–130 on health care transitions for young people, directions for, 131 product research and development, 205–211 Research capacity, defining, 313 Research Data Assistance Center, 64 Research in Disabilities Education program, 303 Research to Aid Persons with Disabilities program, 303 RESNA. See Rehabilitation Engineering and Assistive Technology Society of North America Rising costs, 276–277. See also Medical costs, and populations; Societal costs assessing expansions of coverage in the context of rising costs, 282–283 and the challenge of expanding coverage of assistive services and technologies, 276–283 and implications for people with disabilities, 277–282 responses to rising costs and implications for people with disabilities, 277–282 Risk Adjustment for Measuring Health Care Outcomes, 395 Risk Adjustment Impact Study (RAIS), 401, 404–405 Risk adjustment methods criteria for assessing, 244 desirable characteristics of, 243–244

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The Future of Disability in America evolution of, 244–248 interest in, 241–243 recommendations for improving, 248–250 Risk adjustment models design fitting the application, 417–418 influencing the accuracy of risk scores, 417–418 predictive ratios for alternative, 412 Risk adjustment of insurance premiums in the United States and implications for people with disabilities, 394–425 adequacy of capitation payment for people with disabilities, 408–415 conclusion, 423 current issues and trends, 421 implementation factors that can influence the accuracy of risk scores, 415–421 insurance programs for people with disabilities, 395–396 lessons from purchasers who have implemented HBRA for health plan payment, 406–408 medical costs and populations, 397–398 next generation methods, 421–423 risk segmentation in insurance markets and the need for health-based risk adjustment, 398–406 Risk segmentation in insurance markets defining, 239n and the need for health-based risk adjustment, 398–406 Risk selection, defining, 239n Robert Wood Johnson Foundation (RWJF), 118n, 272n, 401 Rodde v. Bonta, 447 RR&D. See Rehabilitation Research and Development Service S Safe, Accountable, Flexible, Efficient Transportation Equity Act, 545 Sanchez v. Johnson, 444 SBIR. See Small Business Innovation Research Program Scandinavia, 535 SCHIP. See State Children’s Health Insurance Program School Board of Nassau County v. Arline, 466 Science and Technology in the Service of the Physically Handicapped, 22n SCPE. See Specialized customer premises equipment Secondary health conditions, 2 and aging with disability, 136–161 and cerebral palsy, 148–149 cross-condition studies of, 152–153 defining, 140–141 directions for research and education, 153–158 and Downs syndrome, 150–152 life span perspective, 139–144 and poliomyelitis, 149–150 recognizing, 46 recommendations, 158–161 and spinal cord injury, 146–148 Secondary prevention, 138 Section 255 of the Telecommunications Act, 503–507 in the ADA, 503–507 FCC regulations, 505–507 historical background and legislation, 503–505 Section 508 of the Rehabilitation Act, in the ADA, 192–193, 507–508 Section 713 of the Communications Act, 511–515 in the ADA, 511–515 emergency alert system, 514–515 emergency captioning, 513–514 FCC regulations, 512–513 historical background and legislation, 511–512 Selected Significant Condition risk adjustment model, 407 Senate Committee on Appropriations, 207, 302–303 Senate Select Committee on Aging, 521 Services. See Assistive technologies and services for people with disabilities; Personal assistive services; Personal care services SHCN. See Special health care needs SIPP. See Survey of Income and Program Participation Small Business Innovation Research Program (SBIR), 294

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The Future of Disability in America Small Business Technology Transfer Program, 306 SNPs. See Special needs plans SOA. See Society of Actuaries Social and human service agencies, 542–546 Social Security Act, 33, 58n, 257, 268n, 269, 272n amendments to, 80 Title V of, 110, 128 Social Security Administration (SSA), 4, 11, 18, 81, 113–114, 134–135, 251 Social Security Disability Insurance (SSDI), 4, 14, 30, 33, 54n, 76n, 85, 95–96, 113n, 114, 222–223, 231, 246, 250–252, 457 Societal costs. See also Costs; Medical costs, and populations; Rising costs disability and, 17–19 of inaction, 1 Society of Actuaries (SOA), 404, 411 Spanish relay services, 497 Special Education Elementary Longitudinal Study, 5 Special needs plans (SNPs), 395–396, 409 Special Olympics, 302 Specialized customer premises equipment (SCPE), 480 subsidies for, in the Telecommunications for the Disabled Act, 484–485 Speech-to-speech relay services, 496 Speed of answer considerations, 497 Spina bifida, 81–82 Spinal cord injury, literature on secondary conditions, 146–148 Sponsors of disability research, 300–308 Centers for Disease Control and Prevention, 301–303 National Science Foundation, 303–304 other units of the U.S. Department of Health and Human Services, 307–308 units of NIH other than NCMRR, 304–307 U.S. Department of Defense, 308 Spouses as caregivers, 19 SSA. See Social Security Administration SSDI. See Social Security Disability Insurance SSI. See Supplemental Security Income program Standard models of insurance, in health insurance markets for people with disabilities, 235 Standards. See Mandatory minimum standards Standards Committee 63 on Electromagnetic Compatibility, 489 STAR (transportation) systems, 543 State Children’s Health Insurance Program (SCHIP), 4, 8, 14, 109–110, 126, 129, 134, 234, 250–252, 263, 281, 284 State Medicaid Manual, 268n State University of New York at Buffalo, 211 STP. See Supplemental Transportation Programs Stress on individuals and families, increased, 1 Study Activities, 385–391 IOM Committee on Disability in America: A New Look, 389–391 IOM Workshop on Disability in America: An Update, 387–389 Sullivan v. Zebley, 80, 81n Supplemental Security Income (SSI) program, 30, 54, 80, 85, 95, 96n, 109, 112, 114, 134, 232, 457 Supplemental Transportation Programs (STPs), 542 Support of disability research, 287–320 challenges of organizing and coordinating disability research, 308–314 federal disability research programs, 289–308 recommendations, 314–319 Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities, 55 Survey of Income and Program Participation (SIPP), 54, 56–57, 70, 94, 456–457, 459 Sutton v. United Airlines, Inc., 465 T TAEA. See Telecommunications Accessibility Enhancement Act TATRC. See Telemedicine and Advanced Technology Research Center

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The Future of Disability in America Tax Equity and Financial Responsibility Act, 270 TCRP. See Transit Cooperative Research Program TDA. See Telecommunications for the Disabled Act Technological change. See also Assistive technologies and services for people with disabilities; Available technologies; Electronic technologies, advances in; Information technologies, advances in; Mainstream technologies liberating consequences of, 23 policy implications of, 516–517 Technologies used or encountered by people with disabilities, 186–191 assistive technology defined, 186–189 in the environment, 114 mainstream technology and universal design defined, 189–191 Technology, defining, 186 Technology for Long-Term Care, 212 Technology-Related Assistance for Individuals with Disabilities Act, 186 Technology transfer and commercial application, challenge of, 210–211 Telecommunications Accessibility Enhancement Act (TAEA), 481, 502–503 in the ADA, 502–503 Telecommunications Act FCC regulations, 505–507 historical background and legislation, 503–505 Section 255 of, 503–507 Telecommunications for the Disabled Act (TDA), 480, 482–486 FCC regulations, 485–486 historical background and legislation, 482–485 Telecommunications relay services (TRS), 494–502 background and statutory provisions, 494–495 FCC regulations, 495–497 future issues, 498–502 mandatory minimum standards, 500 other relay considerations, 497–498 Telemedicine and Advanced Technology Research Center (TATRC), 308 Telephones. See also Wireless telephones coin-operated, 485 frequently needed by people with hearing loss, 485 provided for emergency use, 485 Teletypewriter (TTY) users, 479 Television Decoder Circuitry Act, 508–511 in the ADA, 508–511 FCC regulations, 510–511 historical background and legislation, 508–509 Tennessee, 448 Tertiary prevention, 138–139 Text-to-speech relay services, 495 The ARC v. Braddock, 444 Ticket to Work and Work Incentives Improvement Act, 472 Ticket to Work and Work Incentives Panel, 114 Ticket to Work program, 4, 11, 114, 134–135 Title I of the ADA, 85 access to legal services, 470–471 ADA complainants with psychiatric disabilities, 471 the administrative charge process, 469–470 benefits for many plaintiffs through settlements, 468–469 employer practices and attitudes, 460–463 employment rates and wage disparities, 456–460 empowerment effects, 463–464 enforcement problems, 34, 469–471 largely reactive, 34, 171 measuring the effects, 456–464 narrowing the protected class in the courts, 465–469 plaintiff victories through lower court decisions, 468 Supreme Court decisions, 465–467 Title IV telecommunications relay services in the ADA, 494–502 background and statutory provisions, 494–495 FCC regulations, 495–497 future issues in, 498–502 other relay considerations, 497–498 Toyota v. Williams, 33, 467

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The Future of Disability in America Traditional transit services, need to improve, 534 Transit Cooperative Research Program (TCRP), 534 Transitions. See also Health care transitions for young people with disabilities care coordination and planning, 124 recommendations concerning secondary conditions, and aging with disability, 4, 10–12 Transitions from child to adult care, 101–103 adolescent population “at risk” for transition, 102–103 goals of health care transition planning for young people, 103 in a life span perspective, 100–101 Transportation patterns and problems of people with disabilities, 519–560 community transportation resources, 530–549 introduction, 519–520 summary and conclusions, 552–554 transportation as part of a package of solutions, 549–551 transportation modes used by drivers with disabilities, 525 travel patterns of people with disabilities, 521–529 Traumatic Brain Injury Model System program, 312 Travel patterns of people with disabilities, 521–529 driving and the aging of society, 526–529 overall travel patterns, 522–526 travel modes used, 524 Trends in chronic health conditions causing limitations of activity, 87 in chronic health conditions related to activity limitations, 95 in employment rates for people with any type of activity limitation, 86 in overweight (obesity) for children, 79 in the prevalence of obesity, 89 in the proportion of civilians needing help with ADLs or IADLs only, 83 in the proportion of civilians who are unable to work, 85 in self-reported health conditions and mobility limitations, 88 Trends in disability in early life, 73–82 activity limitations, 73–75 declines in selected health conditions that contribute to, 81–82 potential explanations of trends, 75–81 Trends in disability in late life, 88–95 disabilities within group residential care settings, 92–93 health conditions associated with, 94 personal care and routine care limitations, 89–92 potential explanations for late-life trends, 94–95 Trends in disability in middle life, 82–88 conditions contributing to, 86–88 employment trends among adults with disabilities, 85–86 limitations in work, 84 personal care or routine care limitations, 82–83 TRS. See Telecommunications relay services TTY. See Teletypewriter users U UCSF. See University of California at San Francisco Uniform Federal Accessibility Standards, 182 United Cerebral Palsy Association, 148 United Kingdom, 58n, 102, 122, 527–528 United Nations, 54n United States Army Research and Materiel Command, 308 United States Postal Service, 172 Universal design Assistive Technology Act, 193 defined, 189–191 for health care facilities, 167 for mainstream technologies, 192–194 other policies, 194 principles of, 191 Section 508 of the Rehabilitation Act, 192–193 University of California at San Francisco (UCSF), 274 University of Maryland, 407 University of Michigan, 195, 211, 214, 259 University of Minnesota, 64 University of Pittsburgh Medical Center (UPMC), 215

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The Future of Disability in America U.S. Census Bureau, 4, 10, 17, 51–52, 57, 59–63, 67–68, 70, 91, 521 U.S. Commission on Civil Rights, 111 U.S. Congress, 4, 6–8, 11–15, 81, 113, 128, 158–159, 180–182, 192–193, 207–208, 210, 218–219, 238n, 245, 248–250, 254n, 256, 263, 285–286, 292n, 304, 306, 315–319, 481, 484 U.S. Constitution, 172 U.S. Department of Commerce, 195, 202, 206, 211 U.S. Department of Defense, 172, 207, 289, 299, 302, 308 U.S. Department of Education, 2, 4, 11, 58, 102, 111–112, 115n, 134–135, 207, 268n, 289, 294, 306, 310n, 316, 508 U.S. Department of Health and Human Services (DHHS), 4, 14, 55, 159, 171, 194n, 212, 233n, 278, 285–286, 289, 294, 302, 306–308, 430, 432, 438, 451. See also individual agencies and offices units of, 307–308 U.S. Department of Housing and Urban Development, 172 U.S. Department of Justice, 4, 6, 12, 171, 173–177, 180–181, 192–193, 202, 210, 429–430, 432, 438–439, 451 U.S. Department of Labor, 114, 293 U.S. Department of the Interior for Indian Affairs, 310n U.S. Department of the Treasury, 502 U.S. Department of Transportation, 173, 289, 310n, 429, 466, 521, 531, 542 U.S. Department of Veterans Affairs (VA), 4, 12–13, 133n, 174–175, 180–182, 198, 207, 209, 259, 289, 310n U.S. disability policy, timeline of milestones in, 31–32 U.S. Food and Drug Administration (FDA), 81, 197–198, 205, 207n, 258 U.S. Maternal and Child Health Bureau (MCHB), 4, 11, 58n, 74, 101–102, 110, 117, 134–135, 233n, 271, 307 U.S. Supreme Court, decisions of, 33, 80–81, 172, 174, 268, 270, 434, 448–450, 465–467 U.S. Surgeon General, 27–28, 101 Usability, FCC regulations concerning, 506 “Use-in-the-home.” See “In-home-use” criterion V VA. See U.S. Department of Veterans Affairs VCO. See Voice and hearing carryover (VCO and HCO) Veterans Health Administration (VHA), 4–5, 12, 146, 178–179, 224n Video relay services (VRS), 496 interoperability of protocols, 499 numbering, 498–499 Violations of standard insurance models in health care, in health insurance markets for people with disabilities, 235–237 Vocational Rehabilitation programs, 273 Voice and hearing carryover (VCO and HCO), 497 VRS. See Video relay services W Walter Reed Army Medical Center, 308 Washington Group, 54n Washington Hospital Center, 174, 438, 447 highlights of ADA settlement involving, 176–177 Weak coordinating mechanisms, for disability research, 310–313 Web Accessibility Initiative, 482 Well-being, defining, 44n West Virginia, 109n Wheelchair Recycler, 275 WHO. See World Health Organization Wireless telephones in the Hearing Aid Compatibility Act, 488–491 hearing aid compatibility rules for, 490 Women’s Health and Aging Study, 49n, 57, 99 Work. See also Employment income support and, 112–114 limitations in, 84 Workforce Investment Act, 192–193, 507 Workshop on Disability in America: A New Look, table of contents for, 392–393 World Health Assembly, 37 World Health Organization (WHO), 3, 5, 25, 36–37, 40, 42, 61, 305 World War II, 238n World Wide Web Consortium, 482

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The Future of Disability in America Y Young people with disabilities. See also Health care transitions for young people with disabilities examples of barriers to care coordination and transition for, 125 selected survey findings about postschool experiences of, 113 usual sources of health care for, 116 Younger adults with disabilities, 227–232. See also Trends employment-based insurance for, 228–231 Medicare and Medicaid for, 231–232 Your Rights Under the Americans with Disabilities Act, 430n